TY - JOUR AU - Biernetzky, A. Olga AU - Thyrian, René Jochen AU - Boekholt, Melanie AU - Berndt, Matthias AU - Hoffmann, Wolfgang AU - Teipel, J. Stefan AU - Kilimann, Ingo PY - 2025/4/7 TI - Identifying Unmet Needs of Informal Dementia Caregivers in Clinical Practice: User-Centered Development of a Digital Assessment Tool JO - JMIR Aging SP - e59942 VL - 8 KW - unmet needs KW - assessment development KW - family caregivers of people with dementia KW - dementia KW - need KW - Alzheimer KW - self-guided KW - self-reported KW - caregiver KW - informal care KW - spousal care KW - interview KW - qualitative KW - thematic KW - usability KW - mHealth KW - tablet KW - self-completed KW - aging KW - patient care KW - health interventions KW - care giver KW - digital health KW - ehealth KW - digital assessment KW - memory N2 - Background: Despite the increasing interventions to support family caregivers of people with dementia, service planning and delivery is still not effective. Objective: Our study aimed to develop a digitally-supported needs assessment tool for family caregivers of people with dementia that is feasible, time-efficient, understood by users, and can be self-completed in the primary care setting. Methods: The development of the unmet needs assessment tool was part of a cluster-randomized controlled trial examining the effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia (GAIN [Gesund Angehörige Pflegen]) and was conducted in 3 phases. Using an iterative participatory approach with informal caregivers, health care professionals including general practitioners, neurologists, psychologists, psychiatrists, nurses, and Alzheimer Society representatives, we developed a digital self-completion unmet needs assessment tool focusing on informal caregivers? biopsychosocial health und quality of life in connection to their caregiver responsibilities. Data were collected through group discussions, written feedback, protocols, think-aloud protocols, and interviews, and analyzed thematically. Results: Data from 27 caregivers, including caregivers of people with dementia (n=18), health care professionals (n=7), and Alzheimer Society representatives (n=2) were collected. Thematic analysis identified 2 main themes: content of the assessment tool and usability and handling of the digital tablet-based assessment tool. The feedback provided by the stakeholders led to new aspects and changes to make the tool comprehensive, easy to read, and easy to handle. The overall mean completion time was reduced from the initial 37 minutes to 18 minutes, which renders the assessment tool fit to be self-completed in waiting rooms of primary care practices or other settings. Conclusions: The input of the 3 stakeholder groups has supported the development of the assessment tool ensuring that all aspects considered important were covered and understood and the completion of the assessment procedure was time-efficient and practically feasible. Further validation of the assessment tool will be performed with the data generated as part of the GAIN trial. Trial Registration: ClinicalTrials.gov NCT04037501; https://clinicaltrials.gov/study/NCT04037501 UR - https://aging.jmir.org/2025/1/e59942 UR - http://dx.doi.org/10.2196/59942 ID - info:doi/10.2196/59942 ER - TY - JOUR AU - Han, Areum AU - Oster, Robert AU - Yuen, Hon AU - Jenkins, Jeremy AU - Hawkins, Jessica AU - Edwards, Lauren PY - 2025/3/31 TI - Videoconference-Delivered Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Pilot Randomized Controlled Trial JO - JMIR Form Res SP - e67545 VL - 9 KW - acceptance and commitment therapy KW - Alzheimer disease KW - caregivers KW - dementia KW - depression KW - web-based intervention KW - quality of life KW - randomized controlled trial KW - stress KW - videoconferencing N2 - Background: Family caregivers of individuals with dementia face significant mental health challenges. Acceptance and commitment therapy (ACT) has emerged as a promising intervention for improving these caregivers? mental health. While various delivery modes of ACT have been explored, there is a need for evidence on the efficacy of videoconference-delivered ACT programs for this population. Objective: This pilot randomized controlled trial, conducted in the United States, aims to assess the effects of a videoconference-delivered, therapist-guided ACT program on reducing depressive symptoms and improving other mental health outcomes among family caregivers with depression who give care to individuals with dementia, compared to a control group that received psychoeducation materials only. Methods: This 2-arm, parallel-group pilot randomized controlled trial randomly assigned 33 family caregivers to either a 10-week videoconference-delivered ACT program (n=16, 48%) or a control group that received psychoeducation materials alone (n=17, 52%). Depressive symptoms (primary outcome) were measured using the Patient Health Questionnaire-9. Secondary outcomes included anxiety, stress, psychological quality of life (QoL), caregiver burden, predeath grief, guilt, and ACT process measures. Outcomes were assessed in the pretest, posttest (10-12 weeks after pretest), and a 3-month follow-up (3 months after posttest, approximately 5-6 months after pretest). An intent-to-treat approach was used for all outcome analyses. Linear mixed-effects models for repeated measures were used to analyze outcomes. Results: The ACT group reported significantly greater improvements in stress (P=.043) and psychological QoL (P=.014) in the posttest compared to the control group. Within the ACT group, participants experienced a significant decrease in depressive symptoms, with a mean (SE) change of ?6.09 (1.16) points (95% CI ?8.42 to ?3.76; P<.001) in the posttest and ?6.71 (1.45) points (95% CI ?9.63 to ?3.81; P<.001) in the 3-month follow-up. These changes exceed the estimated minimal clinically important difference on the Patient Health Questionnaire-9. In addition, the ACT group reported significant improvements in anxiety, stress, psychological QoL, caregiver burden, predeath grief, guilt, values-driven action, and experiential avoidance at both posttest and 3-month follow-up. A sensitivity analysis, excluding 1 participant with near-outlier data, revealed statistically significant between-group differences in depressive symptoms at posttest (P=.037); stress at posttest (P<.001) and in 3-month follow-up (P=.001); psychological QoL at posttest (P<.001); caregiver burden at posttest (P=.003) and in 3-month follow-up (P=.003); predeath grief in 3-month follow-up (P=.031); and values-driven action at posttest (P=.032). Conclusions: The videoconference-delivered ACT program showed promise in improving mental health outcomes and ACT processes among family caregivers with depression who give care to individuals with dementia. Future studies should aim to replicate these findings with larger, more diverse caregiver populations and explore the long-term efficacy of videoconference-delivered ACT programs. Trial Registration: ClinicalTrials.gov NCT05043441; https://clinicaltrials.gov/study/NCT05043441 UR - https://formative.jmir.org/2025/1/e67545 UR - http://dx.doi.org/10.2196/67545 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67545 ER - TY - JOUR AU - Huang, Mengxia Nova AU - Wong, Ze Liang AU - Ho, S. Shirley AU - Timothy, Bryan PY - 2025/2/28 TI - Understanding Challenges and Emotions of Informal Caregivers of General Older Adults and People With Alzheimer Disease and Related Dementia: Comparative Study JO - J Med Internet Res SP - e54847 VL - 27 KW - informal caregivers KW - older adults KW - Alzheimer disease and related dementia KW - online support communities KW - Reddit N2 - Background: Faced with multiple challenges, informal caregivers often turn to online support communities for information and support. While scholarly attention has focused on experiences expressed by informal caregivers in these communities, how caregivers? challenges and emotional expressions vary across different health contexts remains understudied. Objective: We aimed to examine and compare the challenges discussed by informal caregivers of general older adults and those of patients with Alzheimer disease and related dementia, as well as their emotional expressions, on Reddit. In addition, we examined how informal caregivers expressed their emotions in response to various challenges. Methods: We collected posts from 6 subreddits, including 3 subreddits on caregiving for older adults and 3 on caregiving for patients with Alzheimer disease and related dementia. Using topic modeling, we identified topics discussed by caregivers in the collected posts. We further used deep reading to contextualize these topics and understand the challenges behind them, conducted sentiment analysis to investigate their emotional expressions, and used Spearman rank-order correlation to examine the relationship between the obtained topics and emotions. Results: In total, 3028 posts were retrieved, including 1552 from older adult?related subreddits and 1476 from Alzheimer disease?related subreddits; 18 key topics were identified, with the most frequent topics being expressing feelings (2178/3028, 71.93%) and seeking advice and support (1982/3028, 65.46%). Other topics covered various challenges in caregiving, such as duration of medical care (1954/3028, 64.53%), sleep and incontinence (1536/3028, 50.73%), financial issues (1348/3028, 44.52%), and nursing home (1221/3028, 40.32%). There was a positive, negligible correlation between expressing feelings and seeking advice and support (?=0.09, P<.001). Other topics also showed positive, negligible or weak correlations with these 2 topics but in distinct patterns. Posts from older adult?related subreddits were more focused on practical caregiving issues and seeking advice and support, whereas posts from Alzheimer disease?related subreddits emphasized health- and medical-related topics and expressing feelings. Caregivers in both contexts predominantly expressed negative emotions (older adults: 1263/1552, 81.38%; Alzheimer disease: 1247/1476, 84.49%), with caregivers in Alzheimer disease?related subreddits exhibiting slightly greater fear and sadness (P<.001). Specific challenges were significantly correlated with negative emotions: duration of medicalcare was positively, weakly correlated with anger (?=0.25, P<.001), fear (?=0.25, P<.001), and sadness (?=0.22, P<.001). Medical appointments were positively, negligibly correlated with anger (?=0.10, P<.001), fear (?=0.09, P<.001), and sadness (?=0.06, P<.001). Sleep and incontinence (?=0.14, P<.001) and finances (?=0.24, P<.001) were positively, weakly correlated with anger. Conclusions: By identifying the challenges and feelings expressed by caregivers for general older adults and caregivers for patients with Alzheimer disease and related dementia, our findings could inform health practitioners and policy makers in developing more targeted support interventions for informal caregivers in different contexts. UR - https://www.jmir.org/2025/1/e54847 UR - http://dx.doi.org/10.2196/54847 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053723 ID - info:doi/10.2196/54847 ER - TY - JOUR AU - Abdulazeem, Hebatullah AU - Borges do Nascimento, Júnior Israel AU - Weerasekara, Ishanka AU - Sharifan, Amin AU - Grandi Bianco, Victor AU - Cunningham, Ciara AU - Kularathne, Indunil AU - Deeken, Genevieve AU - de Barros, Jerome AU - Sathian, Brijesh AU - Østengaard, Lasse AU - Lamontagne-Godwin, Frederique AU - van Hoof, Joost AU - Lazeri, Ledia AU - Redlich, Cassie AU - Marston, R. Hannah AU - Dos Santos, Alistair Ryan AU - Azzopardi-Muscat, Natasha AU - Yon, Yongjie AU - Novillo-Ortiz, David PY - 2025/2/10 TI - Use of Digital Health Technologies for Dementia Care: Bibliometric Analysis and Report JO - JMIR Ment Health SP - e64445 VL - 12 KW - people living with dementia KW - digital health technologies KW - bibliometric analysis KW - evidence-based medicine N2 - Background: Dementia is a syndrome that compromises neurocognitive functions of the individual and that is affecting 55 million individuals globally, as well as global health care systems, national economic systems, and family members. Objective: This study aimed to determine the status quo of scientific production on use of digital health technologies (DHTs) to support (older) people living with dementia, their families, and care partners. In addition, our study aimed to map the current landscape of global research initiatives on DHTs on the prevention, diagnosis, treatment, and support of people living with dementia and their caregivers. Methods: A bibliometric analysis was performed as part of a systematic review protocol using MEDLINE, Embase, Scopus, Epistemonikos, the Cochrane Database of Systematic Reviews, and Google Scholar for systematic and scoping reviews on DHTs and dementia up to February 21, 2024. Search terms included various forms of dementia and DHTs. Two independent reviewers conducted a 2-stage screening process with disagreements resolved by a third reviewer. Eligible reviews were then subjected to a bibliometric analysis using VOSviewer to evaluate document types, authorship, countries, institutions, journal sources, references, and keywords, creating social network maps to visualize emergent research trends. Results: A total of 704 records met the inclusion criteria for bibliometric analysis. Most reviews were systematic, with a substantial number covering mobile health, telehealth, and computer-based cognitive interventions. Bibliometric analysis revealed that the Journal of Medical Internet Research had the highest number of reviews and citations. Researchers from 66 countries contributed, with the United Kingdom and the United States as the most prolific. Overall, the number of publications covering the intersection of DHTs and dementia has increased steadily over time. However, the diversity of reviews conducted on a single topic has resulted in duplicated scientific efforts. Our assessment of contributions from countries, institutions, and key stakeholders reveals significant trends and knowledge gaps, particularly highlighting the dominance of high-income countries in this research domain. Furthermore, our findings emphasize the critical importance of interdisciplinary, collaborative teams and offer clear directions for future research, especially in underrepresented regions. Conclusions: Our study shows a steady increase in dementia- and DHT-related publications, particularly in areas such as mobile health, virtual reality, artificial intelligence, and sensor-based technologies interventions. This increase underscores the importance of systematic approaches and interdisciplinary collaborations, while identifying knowledge gaps, especially in lower-income regions. It is crucial that researchers worldwide adhere to evidence-based medicine principles to avoid duplication of efforts. This analysis offers a valuable foundation for policy makers and academics, emphasizing the need for an international collaborative task force to address knowledge gaps and advance dementia care globally. Trial Registration: PROSPERO CRD42024511241; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=511241 UR - https://mental.jmir.org/2025/1/e64445 UR - http://dx.doi.org/10.2196/64445 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64445 ER - TY - JOUR AU - Zhu, Ling AU - Xing, Yurong AU - Xu, Wenhui AU - Jia, Hongfei AU - Wang, Xiaoxiao AU - Liu, Shiqing AU - Ding, Yaping PY - 2025/1/20 TI - Completeness of Telehealth Interventions Reporting in Randomized Controlled Trials for Caregivers of People With Dementia: Systematic Review JO - J Med Internet Res SP - e53737 VL - 27 KW - telehealth KW - intervention reporting KW - dementia KW - caregivers KW - Template for Intervention Description and Replication KW - TIDieR-Telehealth checklist N2 - Background: Telehealth interventions can effectively support caregivers of people with dementia by providing care and improving their health outcomes. However, to successfully translate research into clinical practice, the content and details of the interventions must be sufficiently reported in published papers. Objective: This study aims to evaluate the completeness of a telehealth intervention reporting in randomized controlled trials (RCTs) conducted for caregivers of people with dementia. Methods: A systematic search of relevant papers was conducted on July 26, 2023, in 9 electronic databases. RCTs of telehealth interventions for caregivers of people with dementia were included. Two independent researchers extracted the descriptive information and assessed the methodological quality (Cochrane risk of bias tool) and the completeness of reporting of the intervention by using the Template for Intervention Description and Replication (TIDieR)-Telehealth checklist, which consists of 12 items. Results: Thirty-eight eligible RCTs were included finally, and the overall quality of the studies was assessed as moderate. None of the studies completely reported all the TIDieR-Telehealth items. The most frequently reported items were the brief trial name (35/38, 92%), rationale (38/38, 100%), materials and procedures (35/38, 92%), and the modes of delivery (34/38, 90%). The least reported items were the type of location (0/38, 0%), modifications (4/38, 11%), and assessment and improvement of fidelity (9/38, 24%). Conclusions: Many details of the telehealth interventions in RCTs are reported incompletely. Greater adherence to the TIDieR-Telehealth checklist is essential for improving the reporting quality and for facilitating replicability, which has substantial implications for translation into clinical practice. UR - https://www.jmir.org/2025/1/e53737 UR - http://dx.doi.org/10.2196/53737 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/53737 ER - TY - JOUR AU - Keim-Malpass, Jessica AU - Muir, Jane K. AU - Letzkus, C. Lisa AU - Scheer, Eleanore AU - Valdez, S. Rupa PY - 2024/12/30 TI - Examining the Spillover Economic Impacts of Caregiving Among Families of Children With Medical Complexity to Inform Inclusive Economic Models: Qualitative Study JO - J Particip Med SP - e60666 VL - 16 KW - caregiving KW - children with medical complexity KW - social network KW - qualitative KW - self-management KW - care coordination KW - economic evaluation KW - spillover KW - economic model KW - care KW - mobile phone N2 - Background: Children with medical complexity represent a heterogeneous group of children with multiple chronic health care conditions. Caregivers of children with medical complexity experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child?s life. The spillover, or indirect, economic impacts of caregiving are understudied in the context the family units of children with medical complexity. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease, because they lack direct caregiver voice and context of caregiving activities, and existing methods have been noted to be ableist. Objective: This study aimed to explore the economic spillover impacts of caregiving among families of children with medical complexity using their own words and perspectives, with the intent of expanding caregiver-centered perspectives when developing economic models. Methods: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of children with medical complexity and their social networks. Caregivers of children with medical complexity were recruited through a pediatric complex care clinic at an academic medical center in the mid-Atlantic region, United States. This study used inductive qualitative descriptive methods and a template to define features of the person impacted and to define the economic construct as either a direct or indirect (spillover) cost. Results: A total of 20 caregivers were included in this study. Perspectives from the caregivers of children with medical complexity revealed several key themes: (1) time lost from employment, impacting the primary caregivers; (2) physical and mental health impacts, impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care, impacting the child themselves, siblings, and the primary caregivers; and (4) impacts to the social network or social capital. Conclusions: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of children with medical complexity. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. International Registered Report Identifier (IRRID): RR2-10.2196/14810 UR - https://jopm.jmir.org/2024/1/e60666 UR - http://dx.doi.org/10.2196/60666 UR - http://www.ncbi.nlm.nih.gov/pubmed/38758728 ID - info:doi/10.2196/60666 ER - TY - JOUR AU - Radley, Jessica AU - Penhallow, Jessica AU - Wickersham, Alice AU - Morris, Anna AU - Colling, Craig AU - Downs, Johnny PY - 2024/12/26 TI - Factors Affecting Usability and Acceptability of an Online Platform Used by Caregivers in Child and Adolescent Mental Health Services: Mixed Methods Study JO - JMIR Pediatr Parent SP - e60042 VL - 7 KW - child mental health KW - caregivers KW - digital technology KW - digital health KW - technology use KW - digital skill KW - digital literacy KW - digital divides KW - online systems KW - online survey KW - pediatric KW - mental health KW - usability KW - platform KW - survey KW - questionnaire KW - children KW - youth KW - adolescent KW - informal care KW - family care KW - acceptability KW - System Usability Scale KW - SUS KW - mobile phone N2 - Background: Young people and families endure protracted waits for specialist mental health support in the United Kingdom. Staff shortages and limited resources have led many organizations to develop digital platforms to improve access to support. myHealthE is a digital platform used by families referred to Child and Adolescent Mental Health Services in South London. It was initially designed to improve the collection of routine outcome measures and subsequently the ?virtual waiting room? module was added, which includes information about child and adolescent mental health as well as signposting to supportive services. However, little is known about the acceptability or use of digital resources, such as myHealthE, or about sociodemographic inequalities affecting access to these resources. Objective: This study aimed to assess the usability and acceptability of myHealthE as well as investigating whether any digital divides existed among its userbase in terms of sociodemographic characteristics. Methods: A survey was sent to all myHealthE users (N=7337) in May 2023. Caregivers were asked about their usage of myHealthE, their levels of comfort with technology and the internet. They completed the System Usability Scale and gave open-ended feedback on their experiences of using myHealthE. Results: A total of 680 caregivers responded, of whom 45% (n=306) were from a Black, Asian, or a minority ethnic background. Most (n=666, 98%) used a mobile phone to access myHealthE, and many had not accessed the platform?s full functionality, including the new ?virtual waiting room? module. Household income was a significant predictor of caregivers? levels of comfort using technology; caregivers were 13% more likely to be comfortable using technology with each increasing income bracket (adjusted odds ratio 1.13, 95% CI 1.00?1.29). Themes generated from caregivers? feedback highlight strengths of digital innovation as well as ideas for improvement, such as making digital platforms more personalized and tailored toward an individual?s needs. Conclusions: Technology can bring many benefits to health care; however, sole reliance on technology may result in many individuals being excluded. To enhance engagement, clinical services must ensure that digital platforms are mobile friendly, personalized, that users are alerted and directed to their full functionality, and that efforts are made to bridge digital divides. Enhancing dissemination practices and improving accessibility to informative resources on the internet is critical to provide fair access to all using Child and Adolescent Mental Health Services. UR - https://pediatrics.jmir.org/2024/1/e60042 UR - http://dx.doi.org/10.2196/60042 ID - info:doi/10.2196/60042 ER - TY - JOUR AU - Meisel, N. Samuel AU - Hogue, Aaron AU - Kelly, F. John AU - McQuaid, Elizabeth AU - Miranda Jr, Robert PY - 2024/12/20 TI - Examining Caregiver Practices During Adolescent Outpatient Alcohol Use and Co-Occurring Mental Health Treatment: Protocol for a Dyadic Ecological Momentary Assessment Study JO - JMIR Res Protoc SP - e63399 VL - 13 KW - adolescent KW - caregiver KW - ecological momentary assessment KW - alcohol KW - co-occurring disorders treatment KW - treatment KW - older adult KW - aging KW - alcohol use KW - mental health KW - assessment KW - protocol KW - alcohol use disorder KW - drinking KW - substance use KW - data collection N2 - Background: Caregiver-involved treatments for adolescents with alcohol use disorder and co-occurring disorders (AUD+CODs) are associated with the best treatment outcomes. Understanding what caregiving practices during treatment improve core adolescent treatment targets may facilitate the refinement and scalability of caregiver-involved interventions. Caregiving is dynamic, varying by context, affect, and adolescent behavior. Caregiver-involved treatments seek to change momentary interactions between caregivers and their adolescents. Accordingly, this protocol outlines a dyadic ecological momentary assessment (EMA) study to examine caregiving practices during AUD+CODs treatment and their associations with adolescent core treatment targets (eg, alcohol craving and use, motivation to reduce or stop drinking, and internalizing and externalizing symptoms). Objective: This paper aims to describe the methods for examining momentary caregiving practices and adolescent core treatment targets during adolescent outpatient AUD+CODs treatment. Methods: We will recruit 75 caregiver-adolescent dyads from outpatient mental health clinics providing AUD+CODs treatment. Eligible families will have an adolescent who (1) is aged between 13 and 18 years; (2) meets the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, diagnostic criteria for AUD; (3) is enrolled in outpatient treatment at the time of recruitment; and (4) has a legal guardian willing to participate in the study. Caregivers and adolescents will complete an eligibility screening, followed by a baseline assessment during or as close as possible to the second week of treatment. During the baseline assessment, caregivers and adolescents will receive formal training in EMA procedures. Next, caregivers and adolescents will complete a 15-week EMA burst design consisting of three 21-day EMA periods with 3-week breaks between periods. Throughout the study, participants will also complete weekly reports regarding the skills learned or practiced during therapy. The three overarching aims to the proposed study are as follows: (1) examine momentary caregiving practices (eg, support, monitoring, substance use communication quality) and their associations with core treatment targets, (2) examine how these associations change throughout treatment, and (3) examine whether a caregiver report of learning or practicing parenting- or family-focused behaviors in treatment sessions is associated with changes in the use of caregiving practices in daily life. Results: The proposed study was informed by a pilot study assessing the feasibility and acceptability of dyadic EMA during adolescent AUD+COD treatment. Some benchmarks were met during this study (eg, ?80% caregiver retention rate), although most benchmarks were not (eg, adolescent [772/1622, 47.6%] and caregiver [1331/1881, 70.76%] random prompt compliance was below the ?80% target). Data collection is anticipated to begin in December of 2024. The proposed study is designed to be completed over 3 years. Conclusions: Examining momentary caregiving practices using EMA has important implications for refining and scaling caregiver-involved interventions for AUD+CODs so that families who would benefit from caregiver-involved treatments can have access to them. International Registered Report Identifier (IRRID): PRR1-10.2196/63399 UR - https://www.researchprotocols.org/2024/1/e63399 UR - http://dx.doi.org/10.2196/63399 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63399 ER - TY - JOUR AU - Nakamura, Kanako AU - Hamada, Yuko AU - Fujita, Ayaka AU - Morokuma, Seiichi PY - 2024/12/18 TI - Factors That Affect the Quality of Life of Mothers Caring for Children With Medical Needs at Home: Cross-Sectional Questionnaire Study JO - Asian Pac Isl Nurs J SP - e63946 VL - 8 KW - home care KW - children with special health care needs KW - children with medical complexity KW - mother KW - quality of life KW - caregiver KW - questionnaire N2 - Background: The number of children requiring daily medical care is on the rise, with many being cared for at home. This situation places a significant burden on mothers, who often serve as the primary caregivers. Objective: This study aimed to clarify the factors that affect the quality of life of mothers with children who require home health care. Methods: A questionnaire study was conducted among mothers of children needing medical care at home, with 46 participants responding. The questionnaire included items regarding the child?s condition, the mother?s situation, and the World Health Organization Quality of Life-26scale. Results: Factors influencing the quality of life of mothers included whether the child attended daycare or school (?=.274; P=.04), the duration of home care (?=.305; P=.02), and the presence or absence of position changes (?=?.410; P=.003). The presence or absence of position changes had the most significant impact (adjusted R2=.327). Conclusions: The most significant factor affecting the quality of life of mothers of children requiring home medical care is the presence or absence of positional changes. UR - https://apinj.jmir.org/2024/1/e63946 UR - http://dx.doi.org/10.2196/63946 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63946 ER - TY - JOUR AU - Sourander, Saana AU - Westerlund, Minja AU - Baumel, Amit AU - Hinkka-Yli-Salomäki, Susanna AU - Ristkari, Terja AU - Kurki, Marjo AU - Sourander, Andre PY - 2024/12/16 TI - Web-Based Parent Training With Telephone Coaching Aimed at Treating Child Disruptive Behaviors in a Clinical Setting During the COVID-19 Pandemic: Single-Group Study With 2-Year Follow-Up JO - JMIR Pediatr Parent SP - e63416 VL - 7 KW - parent training KW - disruptive behavior KW - child psychopathology KW - child functioning KW - behaviors KW - behavioral KW - coaching KW - web-based KW - family counseling KW - child KW - disruptive KW - counseling KW - training KW - parents KW - parenting KW - telephone KW - telehealth KW - telemedicine KW - pediatrics KW - COVID-19 N2 - Background: There is a lack of studies examining the long-term outcomes of web-based parent training programs implemented in clinical settings during the COVID-19 pandemic. Objective: The aim is to study 2-year outcomes of families with 3? to 8-year-old children referred from family counseling centers to the Finnish Strongest Families Smart Website (SFSW), which provides digital parent training with telephone coaching aimed at treating child disruptive behaviors. Methods: Counseling centers in Helsinki identified fifty 3? to 8-year-old children with high levels of disruptive behavioral problems. Child psychopathology and functioning as well as parenting styles and parental mental health were collected from parents at baseline; posttreatment; and at 6-, 12-, and 24-month follow-ups. Results: The SFSW program had positive long-term changes in child psychopathology and parenting skills. Improvements in child psychopathology, including Strengths and Difficulties Questionnaire total score (Cohen d=0.47; P<.001), Strengths and Difficulties Questionnaire conduct scores (Cohen d=0.65; P<.001), and Affective Reactivity Index irritability scores (Cohen d=0.52; P<.001), were maintained until the 24-month follow-up. Similarly, changes in parenting skills measured with the Parenting Scale, including overreactivity (Cohen d=0.41; P=.001) and laxness (Cohen d=0.26; P=.02), were maintained until the 24-month follow-up. However, parental hostility changes were not maintained at long-term follow-up (Cohen d=?0.04; P=.70). Conclusions: The study shows that the SFSW parent training program can yield significant long-term benefits. Findings indicate that the benefits of the treatment may vary between different parenting styles, which is important to consider when developing more personalized parenting interventions. UR - https://pediatrics.jmir.org/2024/1/e63416 UR - http://dx.doi.org/10.2196/63416 ID - info:doi/10.2196/63416 ER - TY - JOUR AU - Münchenberg, Sarah Pauline AU - Yessimova, Dinara AU - Panteli, Dimitra AU - Kurth, Tobias PY - 2024/11/28 TI - Digital Health Interventions for Informal Family Caregivers of People With First-Episode Psychosis: Systematic Review on User Experience and Effectiveness JO - JMIR Ment Health SP - e63743 VL - 11 KW - first-episode psychosis KW - early psychosis KW - digital health interventions KW - telepsychiatry KW - informal caregivers KW - family caregivers KW - telehealth KW - severe mental disorders KW - psychosis KW - digital intervention KW - digital health KW - mental health KW - psychoeducation KW - mobile phone N2 - Background: First-episode psychosis (FEP) imposes a substantial burden not only on the individual affected but also on their families. Given that FEP usually occurs during adolescence, families overtake a big part of informal care. Early family interventions, especially psychoeducation, are crucial for informal family caregivers to best support the recovery of their loved one with FEP and to reduce the risk of a psychotic relapse as much as possible, but also to avoid chronic stress within the family due to the burden of care. Digital health interventions offer the possibility to access help quicker, use less resources, and improve informal family caregiver outcomes, for example, by reducing stress and improving caregiver quality of life. Objective: This study aimed to systematically identify studies on digital health interventions for informal family caregivers of people with FEP and to describe and synthesize the available literature on user experience, as well as the effectiveness of such digital applications on the clinical outcomes, consisting of (1) perceived caregiver stress, (2) expressed emotion, and (3) parental self-efficacy. Methods: A systematic search was carried out across 4 electronic databases. In addition, reference lists of relevant studies were hand-searched. This review aimed to include only primary studies on informal family caregivers, who had to care for a person with FEP between 15 years and 40 years of age and a diagnosis of FEP with onset of observed symptoms within the past 5 years. All types of digital interventions were included. This systematic review is aligned with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) 2020 guidelines. Results: The search identified 7 studies that reported on user experience or effectiveness of digital health interventions on perceived caregiver stress, expressed emotion, and parental self-efficacy, including 377 informal family FEP caregivers across trials. Digital health interventions?web-based, videoconferences, and mHealth?were well accepted and perceived as relevant, easy to use, and helpful by informal family FEP caregivers. Psychoeducational content was rated as the most important across studies. Perceived caregiver stress, expressed emotion, and parental self-efficacy improved in all studies that reported on these clinical outcomes. Conclusions: The results of this review suggest that digital health interventions aimed at informal family caregivers of individuals with FEP can improve relevant clinical outcomes, with participants reporting a positive user experience. However, for some interventions reviewed, specialized in-person family care outperformed the digital intervention and partially led to better results in perceived caregiver stress and parental self-efficacy. Therefore, while digital interventions present a promising approach to alleviate the burden of care and improve informal family FEP caregiver outcomes, more studies with well-powered experimental designs are needed to further investigate the effectiveness of such applications in this population. Trial Registration: PROSPERO CRD42024536715; https://tinyurl.com/bdd3u7v9 UR - https://mental.jmir.org/2024/1/e63743 UR - http://dx.doi.org/10.2196/63743 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63743 ER - TY - JOUR AU - Van der Roest, Geralde Henriëtte AU - Christie, Liane Hannah AU - Franco-Martin, Angel Manuel AU - Dröes, Rose-Marie AU - de Vugt, Elizabeth Marjolein AU - Meiland, Franka PY - 2024/9/13 TI - Determinants of Successful Implementation of Assistive Technologies for Dementia: Exploratory Survey JO - JMIR Aging SP - e53640 VL - 7 KW - assistive technology KW - dementia KW - implementation KW - caregiving KW - psychosocial research N2 - Background: Despite positive results for the use of assistive technologies (ATs) in dementia, the uptake of ATs lags behind. It is considered important to assess determinants of successful or unsuccessful implementation of ATs. Objective: We explored factors that influence the implementation of ATs for community-dwelling people with dementia, with the aim to better understand potentially effective implementation strategies. Methods: A cross-sectional survey for researchers was developed and disseminated, exploring factors that influence either successful or unsuccessful implementation of ATs for dementia. The survey consisted of closed and open questions. Results: The response rate was 10% (21/206); the 21 respondents who completed the survey were from 8 countries. Determinants of implementation were described for 21 ATs, of which 12 were successfully and 9 were unsuccessfully implemented. Various types of ATs were included, such as online platforms, sensors, or physical aids. The main determinants of implementation success were related to the AT itself, contextual factors, research activities, and implementation strategies. There was a lack of research data on some ethical issues and cost-effectiveness. Conclusions: This study provided insight into some main barriers to and facilitators of implementation of ATs in dementia related to the AT itself, context, research-related activities, and applied implementation strategies. Lessons were formulated for various stakeholders to improve the implementation effectiveness of ATs in dementia. UR - https://aging.jmir.org/2024/1/e53640 UR - http://dx.doi.org/10.2196/53640 ID - info:doi/10.2196/53640 ER - TY - JOUR AU - Loo, Theoren AU - Altman, Myra AU - Grodberg, David AU - La Guardia, Jennifer AU - Bravata, Dena PY - 2024/8/26 TI - Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study JO - JMIR Pediatr Parent SP - e59475 VL - 7 KW - adolescent KW - child KW - caregiver KW - family health KW - resilience KW - psychological KW - mental health KW - pediatric KW - pediatrics KW - paediatric KW - paediatrics KW - children KW - youth KW - adolescents KW - teen KW - teens KW - teenager KW - teenagers KW - strain KW - burden KW - caregiving KW - caregivers KW - carer KW - carers KW - informal care KW - family care KW - spousal care KW - telehealth KW - telemedicine KW - technology-enabled KW - mobile phone N2 - Background: Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child?s condition and (2) subjective strain, that arises from the caregiver?s feelings regarding these events. Objective: This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers? strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. Methods: We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child?s web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. Results: The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child?s future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child?s disease severity (P<.001), decreased significantly in all therapeutic groups. Conclusions: Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7. UR - https://pediatrics.jmir.org/2024/1/e59475 UR - http://dx.doi.org/10.2196/59475 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59475 ER - TY - JOUR AU - Welsh, T. Ellen AU - McIntosh, E. Jennifer AU - Vuong, An AU - Cloud, G. Zoe C. AU - Hartley, Eliza AU - Boyd, H. James PY - 2024/7/3 TI - Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review JO - J Med Internet Res SP - e49431 VL - 26 KW - family therapy KW - family KW - couples KW - eHealth KW - digital health KW - platform KW - platforms KW - e?mental health KW - internet interventions KW - psychosocial interventions KW - psychosocial KW - synthesis KW - review methods KW - review methodology KW - scoping KW - mental health KW - utility KW - design KW - family caregiver KW - caregiver KW - parent KW - child KW - development KW - cocompletion KW - access KW - accessibility KW - engagement KW - families KW - dyad KW - dyadic KW - user engagement KW - user experience KW - mobile phone N2 - Background: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. Objective: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. Methods: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. Results: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver?care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. Conclusions: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation. UR - https://www.jmir.org/2024/1/e49431 UR - http://dx.doi.org/10.2196/49431 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/49431 ER - TY - JOUR AU - Mildrum Chana, Sofía AU - Álvarez, Lorelí AU - Poe, Abigail AU - Bibriescas, Natashia AU - Wang, Hai Danny AU - DiFiglia, Stephanie AU - Azuero, Andrés AU - Crowe, Michael AU - Puga, Frank PY - 2024/6/13 TI - The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study JO - JMIR Res Protoc SP - e55216 VL - 13 KW - dementia KW - caregivers KW - Hispanic KW - Latinx KW - mental health KW - daily diary KW - longitudinal KW - protocol KW - observational cohort study KW - cohort KW - Alzheimer?s disease KW - Alzheimer KW - stress KW - burden KW - loneliness KW - well-being N2 - Background: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. Objective: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for ?Nuestros Días? (Spanish for ?our days?), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. Methods: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. Results: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. Conclusions: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. International Registered Report Identifier (IRRID): DERR1-10.2196/55216 UR - https://www.researchprotocols.org/2024/1/e55216 UR - http://dx.doi.org/10.2196/55216 UR - http://www.ncbi.nlm.nih.gov/pubmed/38869929 ID - info:doi/10.2196/55216 ER - TY - JOUR AU - Pilunthanakul, Thanita AU - Tan, Yee Giles Ming PY - 2024/6/11 TI - Ad Hoc Modifications to a High Dependency Psychiatric Unit for People With Dementia During the COVID-19 Period JO - Interact J Med Res SP - e49618 VL - 13 KW - dementia KW - COVID-19 KW - high dependency psychiatric unit KW - psychiatric intensive care unit KW - caregiver stress KW - SARS-CoV-2 KW - psychiatric KW - psychiatry KW - mental health KW - health care system KW - Alzheimer KW - ward KW - care facility UR - https://www.i-jmr.org/2024/1/e49618 UR - http://dx.doi.org/10.2196/49618 UR - http://www.ncbi.nlm.nih.gov/pubmed/38861715 ID - info:doi/10.2196/49618 ER - TY - JOUR AU - Yin, Zhijun AU - Stratton, Lauren AU - Song, Qingyuan AU - Ni, Congning AU - Song, Lijun AU - Commiskey, Patricia AU - Chen, Qingxia AU - Moreno, Monica AU - Fazio, Sam AU - Malin, Bradley PY - 2024/5/31 TI - Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study JO - JMIR Aging SP - e55169 VL - 7 KW - informal dementia caregiver KW - online health community KW - social support KW - survey KW - online peer support KW - caregiving challenges N2 - Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers? experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer?s Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer?s Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants? belief in the value of online peer support (P=.006). Moreover, of the 40 non?online community caregivers, 33 (83%) had a belief score above 24?the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information?searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information?searching skills. UR - https://aging.jmir.org/2024/1/e55169 UR - http://dx.doi.org/10.2196/55169 ID - info:doi/10.2196/55169 ER - TY - JOUR AU - Scheibl, Fiona AU - Boots, Lizzy AU - Eley, Ruth AU - Fox, Christopher AU - Gracey, Fergus AU - Harrison Dening, Karen AU - Oyebode, Jan AU - Penhale, Bridget AU - Poland, Fiona AU - Ridel, Gemma AU - West, Juniper AU - Cross, L. Jane PY - 2024/5/22 TI - Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design JO - JMIR Form Res SP - e52389 VL - 8 KW - adaptation KW - caregivers KW - dementia KW - intervention KW - web-based resources KW - United Kingdom KW - co-design KW - web-based intervention KW - support KW - carer KW - caregiver KW - family carer KW - community-based KW - services KW - web-based support KW - staff KW - self-help, web-based N2 - Background: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. Objective: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Methods: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Results: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB?s offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. Conclusions: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. Trial Registration: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555 UR - https://formative.jmir.org/2024/1/e52389 UR - http://dx.doi.org/10.2196/52389 UR - http://www.ncbi.nlm.nih.gov/pubmed/38776139 ID - info:doi/10.2196/52389 ER - TY - JOUR AU - Aguirre, Alyssa AU - Hilsabeck, Robin AU - Smith, Tawny AU - Xie, Bo AU - He, Daqing AU - Wang, Zhendong AU - Zou, Ning PY - 2024/5/6 TI - Assessing the Quality of ChatGPT Responses to Dementia Caregivers? Questions: Qualitative Analysis JO - JMIR Aging SP - e53019 VL - 7 KW - Alzheimer?s disease KW - information technology KW - social media KW - neurology KW - dementia KW - Alzheimer disease KW - caregiver KW - ChatGPT N2 - Background: Artificial intelligence (AI) such as ChatGPT by OpenAI holds great promise to improve the quality of life of patients with dementia and their caregivers by providing high-quality responses to their questions about typical dementia behaviors. So far, however, evidence on the quality of such ChatGPT responses is limited. A few recent publications have investigated the quality of ChatGPT responses in other health conditions. Our study is the first to assess ChatGPT using real-world questions asked by dementia caregivers themselves. Objectives: This pilot study examines the potential of ChatGPT-3.5 to provide high-quality information that may enhance dementia care and patient-caregiver education. Methods: Our interprofessional team used a formal rating scale (scoring range: 0-5; the higher the score, the better the quality) to evaluate ChatGPT responses to real-world questions posed by dementia caregivers. We selected 60 posts by dementia caregivers from Reddit, a popular social media platform. These posts were verified by 3 interdisciplinary dementia clinicians as representing dementia caregivers? desire for information in the areas of memory loss and confusion, aggression, and driving. Word count for posts in the memory loss and confusion category ranged from 71 to 531 (mean 218; median 188), aggression posts ranged from 58 to 602 words (mean 254; median 200), and driving posts ranged from 93 to 550 words (mean 272; median 276). Results: ChatGPT?s response quality scores ranged from 3 to 5. Of the 60 responses, 26 (43%) received 5 points, 21 (35%) received 4 points, and 13 (22%) received 3 points, suggesting high quality. ChatGPT obtained consistently high scores in synthesizing information to provide follow-up recommendations (n=58, 96%), with the lowest scores in the area of comprehensiveness (n=38, 63%). Conclusions: ChatGPT provided high-quality responses to complex questions posted by dementia caregivers, but it did have limitations. ChatGPT was unable to anticipate future problems that a human professional might recognize and address in a clinical encounter. At other times, ChatGPT recommended a strategy that the caregiver had already explicitly tried. This pilot study indicates the potential of AI to provide high-quality information to enhance dementia care and patient-caregiver education in tandem with information provided by licensed health care professionals. Evaluating the quality of responses is necessary to ensure that caregivers can make informed decisions. ChatGPT has the potential to transform health care practice by shaping how caregivers receive health information. UR - https://aging.jmir.org/2024/1/e53019 UR - http://dx.doi.org/10.2196/53019 ID - info:doi/10.2196/53019 ER - TY - JOUR AU - Chen, Han Tzu AU - Lee, Shin-Da AU - Ma, Wei-Fen PY - 2024/4/29 TI - Attributes, Quality, and Downloads of Dementia-Related Mobile Apps for Patients With Dementia and Their Caregivers: App Review and Evaluation Study JO - JMIR Form Res SP - e51076 VL - 8 KW - app quality KW - caregiver KW - dementia KW - geriatrics KW - aging KW - technology KW - digital health KW - mHealth KW - mobile health KW - seniors KW - mobile app KW - patient KW - adoption KW - development KW - management N2 - Background: The adoption of mobile health (mHealth) apps among older adults (>65 years) is rapidly increasing. However, use of such apps has not been fully effective in supporting people with dementia and their caregivers in their daily lives. This is mainly attributed to the heterogeneous quality of mHealth apps, highlighting the need for improved app quality in the development of dementia-related mHealth apps. Objective: The aims of this study were (1) to assess the quality and content of mobile apps for dementia management and (2) to investigate the relationship between app quality and download numbers. Methods: We reviewed dementia-related mHealth apps available in the Google Play Store and Apple App Store in Taiwan. The identified mobile apps were stratified according to a random sampling approach and evaluated by five independent reviewers with sufficient training and proficiency in the field of mHealth and the related health care sector. App quality was scored according to the user version of the Mobile Application Rating Scale. A correlation analysis was then performed between the app quality score and number of app downloads. Results: Among the 17 apps that were evaluated, only one was specifically designed to provide dementia-related education. The mean score for the overall app quality was 3.35 (SD 0.56), with the engagement (mean 3.04, SD 0.82) and information (mean 3.14, SD 0.88) sections of the scale receiving the lowest ratings. Our analyses showed clear differences between the top three? and bottom three?rated apps, particularly in the entertainment and interest subsections of the engagement category where the ratings ranged from 1.4 to 5. The top three apps had a common feature in their interface, which included memory, attention, focus, calculation, and speed-training games, whereas the apps that received lower ratings were found to be deficient in providing adequate information. Although there was a correlation between the number of downloads (5000 or more) and app quality (t15=4.087, P<.001), this may not be a significant determinant of the app?s perceived impact. Conclusions: The quality of dementia-related mHealth apps is highly variable. In particular, our results show that the top three quality apps performed well in terms of engagement and information, and they all received more than 5000 downloads. The findings of this study are limited due to the small sample size and possibility of disregarding exceptional occurrences. Publicly available expert ratings of mobile apps could help people with dementia and their caregivers choose a quality mHealth app. UR - https://formative.jmir.org/2024/1/e51076 UR - http://dx.doi.org/10.2196/51076 UR - http://www.ncbi.nlm.nih.gov/pubmed/38684083 ID - info:doi/10.2196/51076 ER - TY - JOUR AU - Kwok, Ian AU - Lattie, Gardiner Emily AU - Yang, Dershung AU - Summers, Amanda AU - Cotten, Paul AU - Leong, Alina Caroline AU - Moskowitz, Tedlie Judith PY - 2024/4/25 TI - Developing Social Enhancements for a Web-Based, Positive Emotion Intervention for Alzheimer Disease Caregivers: Qualitative Focus Group and Interview Study JO - JMIR Form Res SP - e50234 VL - 8 KW - Alzheimer disease KW - dementia KW - caregiving KW - eHealth KW - web-based interventions KW - positive emotion KW - stress KW - coping N2 - Background: Alzheimer disease is a degenerative neurological condition that requires long-term care. The cost of these responsibilities is often borne by informal caregivers, who experience an elevated risk of negative physical and psychological outcomes. Previously, we designed a positive emotion regulation intervention that was shown to improve well-being among dementia caregivers when delivered through one-on-one videoconferencing lessons with a trained facilitator. However, the format required significant resources in terms of logistics and facilitator time. To broaden the reach of the intervention, we aimed to develop the Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF) program, an iteration of the intervention in a self-guided, web-based format with enhanced opportunities for social connection. Objective: The aim of this study was to gather feedback to inform the design of social features for the SAGE LEAF intervention. In the absence of a facilitator, our goal with the self-guided SAGE LEAF intervention was to integrate various social features (eg, discussion board, automated support, and profiles) to maximize engagement among participants. Methods: Qualitative data were collected from 26 individuals through (1) interviews with participants who completed a previous version of the intervention via videoconferencing with a facilitator, (2) focus groups with dementia caregivers who had not previously experienced the intervention, and (3) focus groups with Alzheimer disease clinical care providers. We conducted a qualitative thematic analysis to identify which social features would be the most helpful and how they could be implemented in a way that would be best received by caregivers. Results: Interview and focus group feedback indicated that participants generally liked the potential features suggested, including the discussion boards, multimedia content, and informational support. They had valuable suggestions for optimal implementation. For example, participants liked the idea of a buddy system where they would be matched up with another caregiver for the duration of the study. However, they expressed concern about differing expectations among caregivers and the possibility of matched caregivers not getting along. Participants also expressed interest in giving caregivers access to a podcast on the skills, which would allow them to review additional content when they wished. Conclusions: Taken together, the discussions with caregivers and providers offered unique insights into the types of social features that may be integrated into the SAGE LEAF intervention, as well as implementation suggestions to improve the acceptability of the features among caregivers. These insights will allow us to design social features for the intervention that are optimally engaging and helpful for caregivers. UR - https://formative.jmir.org/2024/1/e50234 UR - http://dx.doi.org/10.2196/50234 UR - http://www.ncbi.nlm.nih.gov/pubmed/38662432 ID - info:doi/10.2196/50234 ER - TY - JOUR AU - Wall, Håkan AU - Hansson, Helena AU - Zetterlind, Ulla AU - Kvillemo, Pia AU - Elgán, H. Tobias PY - 2024/4/10 TI - Effectiveness of a Web-Based Individual Coping and Alcohol Intervention Program for Children of Parents With Alcohol Use Problems: Randomized Controlled Trial JO - J Med Internet Res SP - e52118 VL - 26 KW - adolescent KW - adolescents KW - alcoholic KW - alcoholics KW - CBT KW - children of impaired parents KW - cognitive behavioral therapy KW - coping KW - digital intervention KW - mental health KW - randomized controlled trial KW - RCT KW - self-management KW - substance abuse KW - substance use KW - therapist KW - web-based intervention KW - youth N2 - Background: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents. Objective: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems. Methods: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL). Results: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=?0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention. Conclusions: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence. Trial Registration: ISRCTN Registry ISRCTN41545712; https://www.isrctn.com/ISRCTN41545712?q=ISRCTN41545712 International Registered Report Identifier (IRRID): RR2-10.1186/1471-2458-12-35 UR - https://www.jmir.org/2024/1/e52118 UR - http://dx.doi.org/10.2196/52118 UR - http://www.ncbi.nlm.nih.gov/pubmed/38598286 ID - info:doi/10.2196/52118 ER - TY - JOUR AU - Messina, Anna AU - Amati, Rebecca AU - Annoni, Maria Anna AU - Bano, Beatrice AU - Albanese, Emiliano AU - Fiordelli, Maddalena PY - 2024/1/24 TI - Culturally Adapting the World Health Organization Digital Intervention for Family Caregivers of People With Dementia (iSupport): Community-Based Participatory Approach JO - JMIR Form Res SP - e46941 VL - 8 KW - informal caregivers KW - iSupport KW - dementia KW - digital interventions KW - mHealth KW - community-based participatory research KW - community KW - caregiver KW - mental distress KW - physical distress KW - support KW - development N2 - Background: Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia. Objective: Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual. Methods: We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation. Results: The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from ?lesson? to ?chapter? and from ?suffering from? dementia to ?affected by? dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey). Conclusions: Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context. UR - https://formative.jmir.org/2024/1/e46941 UR - http://dx.doi.org/10.2196/46941 UR - http://www.ncbi.nlm.nih.gov/pubmed/38265857 ID - info:doi/10.2196/46941 ER - TY - JOUR AU - Silaule, Olindah AU - Casteleijn, Daleen AU - Adams, Fasloen AU - Nkosi, Gloria Nokuthula PY - 2024/1/18 TI - Strategies to Alleviate the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Low- and Middle-Income Countries: Scoping Review JO - Interact J Med Res SP - e48587 VL - 13 KW - severe mental disorders KW - informal caregivers KW - caregiver stress KW - caregiver support KW - low- and middle-income country KW - mobile phone N2 - Background: There is considerable evidence of the burden of care encountered by informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Previous studies have highlighted the need to support these informal caregivers as key players in the care of these patients. To date, limited evidence exists on the extent and types of strategies for supporting these informal caregivers in low- and middle-income countries. Objective: This scoping review aims to identify and describe the extent and type of evidence on the existing strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Methods: A systematic literature search was completed following the Joanna Briggs Institute methodology for scoping reviews. The participants, concept, and context framework was used to guide the search for literature sources across 5 databases: PubMed, MEDLINE, CINAHL, and PsycINFO for published literature and ProQuest for unpublished literature. This review included studies that reported on strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions, with a focus on studies that evaluated or recommended caregiver interventions and support strategies in low- and middle-income countries. The search was limited to studies conducted between 2001 and 2021, and only papers written in English were considered for inclusion. Using the Covidence software (Veritas Health Innovation), 2 reviewers independently screened the papers, applied the inclusion and exclusion criteria, and met biweekly to discuss and resolve conflicts. The relevant studies and reported outcomes were summarized, organized, and analyzed descriptively using numeric summary analysis and deductive content analysis. Results: Of the 18,342 studies identified, 44 (0.24%) met the inclusion criteria. The included studies were from 16 low- and middle-income countries in Asia, Africa, Europe, and South and North America. Most studies (21/44, 48%) were randomized controlled trials conducted in Asian countries. The identified strategies were grouped into 2 categories: implemented and recommended intervention strategies. Identified strategies included community-based interventions, psychoeducation interventions, support groups, cognitive behavioral therapy, spirituality-based interventions, and smartphone-based interventions. In addition, mindfulness and empowerment, collaborative interventions, standard care, financial and social support, counseling, occupation-based interventions, policy and legislature, and access to mental health care were identified. Psychoeducation and support group interventions were identified as common strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions. Conclusions: This review provides evidence on the types of implemented and recommended strategies for alleviating the burden of care among informal caregivers in low- and middle-income countries. Although psychoeducational interventions were the most preferred strategy for alleviating burden, their benefits were short-lived when compared with peer-led support groups. International Registered Report Identifier (IRRID): RR2-10.2196/44268 UR - https://www.i-jmr.org/2024/1/e48587 UR - http://dx.doi.org/10.2196/48587 UR - http://www.ncbi.nlm.nih.gov/pubmed/38236636 ID - info:doi/10.2196/48587 ER - TY - JOUR AU - Garcia, N. Celeste AU - Duran, C. Miriana AU - Ramirez, Magaly PY - 2024/1/11 TI - Refining Cultural Adaptations of a Behavioral Intervention for Latino Caregivers of People Living With Dementia: Qualitative Interview Study in Washington State JO - JMIR Aging SP - e53671 VL - 7 KW - caregivers KW - caregiver KW - caregiving KW - carer KW - carers KW - STAR-C KW - STAR caregiver KW - internet KW - web-based KW - online KW - educational KW - education KW - family care KW - family KW - families KW - informal care KW - adaptation KW - adaptations KW - cultural KW - culturally KW - module KW - modules KW - training KW - Hispanic KW - Hispanics KW - Spanish KW - Latin KW - Latina KW - Latinas KW - Latinos KW - Latinx KW - Latino KW - dementia KW - qualitative research KW - Alzheimer disease KW - qualitative KW - Alzheimer KW - experience KW - experiences KW - attitude KW - attitudes KW - opinion KW - perception KW - perceptions KW - perspective KW - perspectives KW - aging KW - older adults KW - old age KW - mental health KW - neuro KW - ageing KW - geriatrics KW - gerontology KW - geriatric KW - interview KW - eHealth KW - digital health KW - alzheimers KW - memory KW - memory loss KW - care giving KW - Hispanic or Latino KW - mobile phone N2 - Background:  In the United States, Latino caregivers of individuals with dementia face unique challenges and an elevated risk of adverse health outcomes. Despite the increasing prevalence of Alzheimer disease and related dementias among Latino adults, few evidence-based interventions are tailored to their cultural context. To address this gap, we examined the cultural adaptations required for the STAR caregivers (STAR-C) virtual intervention, an evidence-based intervention that educates family caregivers to manage behavioral and psychological symptoms of dementia. While STAR-C has shown effectiveness, neither the original in-person nor the virtual intervention considered the distinct experiences of Latino caregivers, who often bring culturally significant values into caregiving interactions. Objective: This study?s objective was to test and refine the preliminary cultural adaptations of the STAR-C web-based training modules for Latino caregivers of people living with dementia. Methods: Through qualitative interviews with 15 Latino caregivers in Washington State, we identified key adaptations to enhance the cultural relevance of the web-based training modules. Results: The interviews highlighted 4 main themes for adaptation: the delivery of the STAR-C web-based training modules, comprehensive dementia education, simplified problem-solving strategies, and prioritizing caregiver well-being. Conclusions: This study?s findings informed the development of culturally adapted STAR-C web-based training modules that aim to provide tailored support to Latino caregivers. While further research is needed to assess the efficacy of these adaptations, our work contributes to bridging the gap in dementia caregiving for Latino families, potentially reducing health disparities and enhancing health care services for this population. UR - https://aging.jmir.org/2024/1/e53671 UR - http://dx.doi.org/10.2196/53671 UR - http://www.ncbi.nlm.nih.gov/pubmed/38206663 ID - info:doi/10.2196/53671 ER - TY - JOUR AU - Buck, Benjamin AU - Wingerson, Mary AU - Whiting, Erica AU - Snyder, Jaime AU - Monroe-DeVita, Maria AU - Ben-Zeev, Dror PY - 2023/11/30 TI - User-Centered Development of Bolster, an mHealth Intervention for Early Psychosis Caregivers: Needs Assessment, Prototyping, and Field Trial JO - JMIR Ment Health SP - e50522 VL - 10 KW - caregiving KW - psychosis KW - mobile health KW - mHealth KW - user-centered design KW - mobile phone KW - artificial intelligence KW - AI N2 - Background: Caregivers play a critical role in the treatment and recovery of youth and young adults at risk for psychosis. Caregivers often report feeling isolated, overwhelmed, and lacking in resources. Mobile health (mHealth) has the potential to provide scalable, accessible, and in-the-moment support to caregivers. To date, few if any mHealth resources have been developed specifically for this population. Objective: The aim of this study was to conduct user-centered design and testing of an mHealth intervention to support early psychosis caregivers. Methods: We conducted a multiphase user-centered development process to develop the Bolster mobile app. In phase 1, a total of 21 caregivers were recruited to participate in a qualitative needs assessment and respond to an initial prototype of the Bolster platform. Content analysis was used to identify key needs and design objectives, which guided the development of the Bolster mobile app. In phase 2, a total of 11 caregivers were recruited to participate in a 1-week field trial wherein they provided qualitative and quantitative feedback regarding the usability and acceptability of Bolster; in addition, they provided baseline and posttest assessments of the measures of distress, illness appraisals, and family communication. Results: In phase 1, participants identified psychoeducation, communication coaching, a guide to seeking services, and support for coping as areas to address. Live prototype interaction sessions led to multiple design objectives, including ensuring that messages from the platform were actionable and tailored to the caregiver experience, delivering messages in multiple modalities (eg, video and text), and eliminating a messaging-style interface. These conclusions were used to develop the final version of Bolster tested in the field trial. In phase 2, of the 11 caregivers, 10 (91%) reported that they would use Bolster if they had access to it and would recommend it to another caregiver. They also reported marked changes in their appraisals of illness (Cohen d=0.55-0.68), distress (Cohen d=1.77), and expressed emotion (Cohen d=0.52). Conclusions: To our knowledge, this study is the first to design an mHealth intervention specifically for early psychosis caregivers. Preliminary data suggest that Bolster is usable, acceptable, and promising to improve key targets and outcomes. A future fully powered clinical trial will help determine whether mHealth can reduce caregiver burdens and increase engagement in services among individuals affected by psychosis. UR - https://mental.jmir.org/2023/1/e50522 UR - http://dx.doi.org/10.2196/50522 UR - http://www.ncbi.nlm.nih.gov/pubmed/38032692 ID - info:doi/10.2196/50522 ER - TY - JOUR AU - Wislocki, Katherine AU - Jager-Hyman, Shari AU - Brady, Megan AU - Weiss, Michal AU - Schaechter, Temma AU - Khazanov, Gabriela AU - Young, Sophia AU - Becker-Haimes, Emily PY - 2023/11/3 TI - Freely Available Training Videos for Suicide Prevention: Scoping Review JO - JMIR Ment Health SP - e48404 VL - 10 KW - freely available videos KW - asynchronous training KW - suicide prevention KW - evidence-based practice KW - dissemination KW - implementation N2 - Background: Freely available and asynchronous implementation supports can reduce the resource burden of evidence-based practice training to facilitate uptake. Freely available web-based training videos have proliferated, yet there have been no efforts to quantify their breadth, depth, and content for suicide prevention. Objective: This study presents results from a scoping review of freely available training videos for suicide prevention and describes a methodological framework for reviewing such videos. Methods: A scoping review of freely available training videos (?2 minutes) for suicide prevention practices was conducted using 4 large video-sharing platforms: YouTube, Vimeo, Bing Video, and Google Video. Identified suicide prevention training videos (N=506) were reviewed and coded. Results: Most content was targeted toward gatekeepers or other lay providers (n=370) versus clinical providers (n=136). Videos most commonly provided content related to suicidal thoughts or behaviors (n=420). Many videos (n=274, 54.2%) included content designed for certain communities or organizations. Less than half (n=232, 45.8%) of training videos included formal clinical content pertaining to assessment or intervention for suicide prevention. Conclusions: Results suggested an abundance of videos providing broad informational content (eg, ?signs and symptoms of someone at risk for suicide?) and a limited portion of videos with instructional content aimed at clinical providers delivering formal evidence-based assessments or interventions for suicide prevention. Development of resources to address identified gaps may be needed. Future work may leverage machine learning techniques to expedite the review process. UR - https://mental.jmir.org/2023/1/e48404 UR - http://dx.doi.org/10.2196/48404 UR - http://www.ncbi.nlm.nih.gov/pubmed/37921847 ID - info:doi/10.2196/48404 ER - TY - JOUR AU - Leng, Minmin AU - Sun, Yue AU - Li, Ce AU - Han, Shuyu AU - Wang, Zhiwen PY - 2023/9/26 TI - Usability Evaluation of a Knowledge Graph?Based Dementia Care Intelligent Recommender System: Mixed Methods Study JO - J Med Internet Res SP - e45788 VL - 25 KW - caregivers KW - dementia KW - knowledge graph KW - recommender system KW - usability evaluation KW - dementia care intelligent recommender system KW - DCIRS N2 - Background: Knowledge graph?based recommender systems offer the possibility of meeting the personalized needs of people with dementia and their caregivers. However, the usability of such a recommender system remains unknown. Objective: This study aimed to evaluate the usability of a knowledge graph?based dementia care intelligent recommender system (DCIRS). Methods: We used a convergent mixed methods design to conduct the usability evaluation, including the collection of quantitative and qualitative data. Participants were recruited through social media advertisements. After 2 weeks of DCIRS use, feedback was collected with the Computer System Usability Questionnaire and semistructured interviews. Descriptive statistics were used to describe sociodemographic characteristics and questionnaire scores. Qualitative data were analyzed systematically using inductive thematic analysis. Results: A total of 56 caregivers were recruited. Quantitative data suggested that the DCIRS was easy for caregivers to use, and the mean questionnaire score was 2.14. Qualitative data showed that caregivers generally believed that the content of the DCIRS was professional, easy to understand, and instructive, and could meet users? personalized needs; they were willing to continue to use it. However, the DCIRS also had some shortcomings. Functions that enable interactions between professionals and caregivers and that provide caregiver support and resource recommendations might be added to improve the system?s usability. Conclusions: The recommender system provides a solution to meet the personalized needs of people with dementia and their caregivers and has the potential to substantially improve health outcomes. The next step will be to optimize and update the recommender system based on caregivers? suggestions and evaluate the effect of the application. UR - https://www.jmir.org/2023/1/e45788 UR - http://dx.doi.org/10.2196/45788 UR - http://www.ncbi.nlm.nih.gov/pubmed/37751241 ID - info:doi/10.2196/45788 ER - TY - JOUR AU - Gleeson, John AU - Lin, Ashleigh AU - Koval, Peter AU - Hopkins, Liza AU - Denborough, Paul AU - Lederman, Reeva AU - Herrman, Helen AU - Bendall, Sarah AU - Eleftheriadis, Dina AU - Cotton, Sue AU - Perry, Yael AU - Kaess, Michael AU - Alvarez-Jimenez, Mario PY - 2023/9/6 TI - Moderated Online Social Therapy for Carers of Early Psychosis Clients in Real-World Settings: Cluster Randomized Controlled Trial JO - JMIR Ment Health SP - e47722 VL - 10 KW - first-episode psychosis KW - carers KW - eHealth KW - families KW - stress KW - psychosis KW - digital mental health intervention KW - web-based therapy KW - social therapy N2 - Background: Family carers of youth recovering from early psychosis experience significant stress; however, access to effective family interventions is poor. Digital interventions provide a promising solution. Objective: Our objective was to evaluate across multiple Australian early psychosis services the effectiveness of a novel, web-based early psychosis intervention for carers. Methods: In this cluster randomized controlled trial conducted across multiple Australian early psychosis services, our digital moderated online social therapy for carers (Altitudes) plus enhanced family treatment as usual (TAU) was compared with TAU alone on the primary outcome of perceived stress and secondary outcomes including mental health symptoms and family variables at the 6-month follow-up. Results: Eighty-six caregivers were randomized and data were available for 74 young people in their care. Our primary hypothesis that carers randomized to Altitudes+TAU would report greater improvements in perceived stress at follow-up compared with carers randomized to TAU alone was not supported, with the TAU alone group showing more improvement. For secondary outcomes, the TAU alone group showed improved mindfulness over time. Regardless of group assignment, we observed improvements in satisfaction with life, quality of life, emotional overinvolvement, and burden of care. In contrast, hair cortisol concentration increased. Post hoc analyses revealed more contact with early psychosis services in the intervention group compared to TAU alone and that improvements in perceived stress and social support were associated with use of the intervention in the Altitudes+TAU group. In this study, 80% (12/15) reported a positive experience with Altitudes and 93% (14/15) would recommend it to others. Conclusions: Our trial did not show a treatment effect for Altitudes in perceived stress. However, our post hoc analysis indicated that the amount of use of Altitudes related to improvements in stress and social support. Additional design work is indicated to continue users? engagement and to significantly improve outcomes in problem-solving, communication, and self-care. Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12617000942358; https://trialsearch.who.int/Trial2.aspx?TrialID=ACTRN12617000942358 UR - https://mental.jmir.org/2023/1/e47722 UR - http://dx.doi.org/10.2196/47722 UR - http://www.ncbi.nlm.nih.gov/pubmed/37672335 ID - info:doi/10.2196/47722 ER - TY - JOUR AU - Fan, Qiping AU - DuBose, Logan AU - Ory, G. Marcia AU - Lee, Shinduk AU - Hoang, Minh-Nguyet AU - Vennatt, Jeswin AU - Kew, Lin Chung AU - Doyle, David AU - Falohun, Tokunbo PY - 2023/9/5 TI - Financial, Legal, and Functional Challenges of Providing Care for People Living With Dementia and Needs for a Digital Platform: Interview Study Among Family Caregivers JO - JMIR Aging SP - e47577 VL - 6 KW - family caregiver KW - Alzheimer disease KW - dementia KW - caregiving challenges KW - digital health KW - community-based participatory research KW - mobile phone N2 - Background: Alzheimer disease and Alzheimer disease?related dementia represent complex neuropathologies directly challenging individuals, their families, and communities in the United States. To support persons living with dementia, family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely used solution such as a consolidated web-based assistance or guidance platform is missing, compounding care challenges. Objective: In preparation for designing an internet-based artificial intelligence?driven digital resource platform, a qualitative interview study was conducted to characterize the challenges and needs of family caregivers in the United States. Methods: A semistructured interview topic guide in English was developed by engaging community partners and research partnerships. Family caregiver participants were purposefully recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. Interested individuals were first invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange a web-based in-depth interview via Zoom (Zoom Video Communications) from January 1, 2022, to May 31, 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants? demographics, socioeconomic characteristics, and caregiving information. Thematic analysis in a framework approach was used to identify and organize themes and the study findings. Results: Following the prescreening of 150 eligible respondents, 20% (30/150) individuals completed both the interviews and follow-up survey, allowing for an in-depth look into the challenges, experiences, and expectations of primary caregivers of people living with dementia. Most participants (20/30, 67%) were primary caregivers of persons with dementia, and 93% (28/30) had provided care for at least a year. Most participants were aged >50 years (25/30, 83%), female (23/30, 77%), White (25/30, 83%), and non-Hispanic (27/30, 90%) and held a bachelor?s or graduate degree (22/30, 73%). Collectively, all participants acknowledged challenges in caring for people living with dementia. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. In addition, participants identified the need for an integrative digital platform where information could be supplied to foster education, share resources, and provide community support, enabling family caregivers to improve the quality of care and reducing caregiver burden. Conclusions: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive web-based platform to mitigate current challenges within the caregiving role. UR - https://aging.jmir.org/2023/1/e47577 UR - http://dx.doi.org/10.2196/47577 UR - http://www.ncbi.nlm.nih.gov/pubmed/37526513 ID - info:doi/10.2196/47577 ER - TY - JOUR AU - McCrae, S. Christina AU - Curtis, F. Ashley AU - Stearns, A. Melanie AU - Nair, Neetu AU - Golzy, Mojgan AU - Shenker, I. Joel AU - Beversdorf, Q. David AU - Cottle, Amelia AU - Rowe, A. Meredeth PY - 2023/8/24 TI - Development and Initial Evaluation of Web-Based Cognitive Behavioral Therapy for Insomnia in Rural Family Caregivers of People With Dementia (NiteCAPP): Mixed Methods Study JO - JMIR Aging SP - e45859 VL - 6 KW - arousal KW - caregivers KW - cognitive behavioral therapy KW - CBT: cognitive behavioral therapy for insomnia KW - CBT-I KW - dementia KW - insomnia KW - internet N2 - Background: Informal caregivers of people with dementia frequently experience chronic insomnia, contributing to stress and poor health outcomes. Rural caregivers are particularly vulnerable but have limited access to cognitive behavioral therapy for insomnia (CBT-I), a recommended frontline treatment for chronic insomnia. Web-based delivery promises to improve insomnia, particularly for rural caregivers who have limited access to traditional in-person treatments. Our team translated an efficacious 4-session standard CBT-I content protocol into digital format to create NiteCAPP. Objective: This study aimed to (1) adapt NiteCAPP for dementia caregivers to create NiteCAPP CARES, a tailored digital format with standard CBT-I content plus caregiver-focused modifications; (2) conduct usability testing and evaluate acceptability of NiteCAPP CARES? content and features; and (3) pilot-test the adapted intervention to evaluate feasibility and preliminary effects on sleep and related health outcomes. Methods: We followed Medical Research Council recommendations for evaluating complex medical interventions to explore user needs and adapt and validate content using a stepwise approach: (1) a rural dementia caregiver (n=5) and primary care provider (n=5) advisory panel gave feedback that was used to adapt NiteCAPP; (2) caregiver (n=5) and primary care provider (n=7) focus groups reviewed the newly adapted NiteCAPP CARES and provided feedback that guided further adaptations; and (3) NiteCAPP CARES was pilot-tested in caregivers (n=5) for feasibility and to establish preliminary effects. Self-report usability measures were collected following intervention. Before and after treatment, 14 daily electronic sleep diaries and questionnaires were collected to evaluate arousal, health, mood, burden, subjective cognition, and interpersonal processes. Results: The stepped approach provided user and expert feedback on satisfaction, usefulness, and content, resulting in a new digital CBT-I tailored for rural dementia caregivers: NiteCAPP CARES. The advisory panel recommended streamlining content, eliminating jargon, and including caregiver-focused content. Focus groups gave NiteCAPP CARES high usefulness ratings (mean score 4.4, SD 0.79, scored from 1=least to 5=most favorable; score range 4.2-4.8). Multiple features were evaluated positively, including the intervention?s comprehensive and engaging information, caregiver focus, good layout, easy-to-access intervention material, and easy-to-understand sleep graphs. Suggestions for improvement included the provision of day and night viewing options, collapsible text, font size options, tabbed access to videos, and a glossary of terms. Pilot-test users rated usefulness (mean score 4.3, SD 0.83; range 4.1-4.5) and satisfaction (mean score 8.4, SD 1.41, scored from 1=least to 10=most satisfied; range 7.4-9.0) highly. Preliminary effects on caregiver sleep, arousal, health, mood, burden, cognition, and interpersonal processes (all P<.05) were promising. Conclusions: Adaptations made to standard digital CBT-I created a feasible, tailored digital intervention for rural dementia caregivers. Important next steps include further examination of feasibility and efficacy in a randomized controlled trial with an active control condition, a multisite effectiveness trial, and eventual broad dissemination. Trial Registration: ClinicalTrials.gov NCT04632628; https://clinicaltrials.gov/ct2/show/NCT04632628 UR - https://aging.jmir.org/2023/1/e45859 UR - http://dx.doi.org/10.2196/45859 UR - http://www.ncbi.nlm.nih.gov/pubmed/37616032 ID - info:doi/10.2196/45859 ER - TY - JOUR AU - Mahmoudi Asl, Aysan AU - Kouters, Suzanne AU - Castro-González, Álvaro AU - Van der Roest, Henriëtte AU - Franco Martin, Manuel AU - Dröes, Rose-Marie PY - 2023/8/2 TI - Potential Facilitators of and Barriers to Implementing the MINI Robot in Community-Based Meeting Centers for People With Dementia and Their Carers in the Netherlands and Spain: Explorative Qualitative Study JO - J Med Internet Res SP - e44125 VL - 25 KW - dementia KW - meeting centers KW - mild cognitive impairment KW - social robots N2 - Background: Social robots, as a form of digital health technologies, are used to support emotional, cognitive, and physical care and have shown promising outcomes in enhancing social well-being in people with dementia (PwD) by boosting emotions, social interactions, and activity participation. Objective: The goal is to investigate the attitude of stakeholders and potential facilitators and the barriers to implementing the social robot MINI in community-based meeting centers (MCs) for PwD and carers in the Netherlands and Spain. Methods: Based on the British Medical Research Council guidance for process evaluation of the implementation of complex interventions and the model for tracing the facilitators of and barriers to the adaptive implementation of innovations in dementia care, an explorative qualitative study was conducted. Following the introduction of the MINI robot, 11 stakeholders were interviewed in 3 MCs in the Netherlands and 1 in Spain, as well as stakeholders in health and welfare organizations in both countries. In addition, 12 adults with dementia participated in focus groups. The data were thematically analyzed and narratively described. Results: Overall, the stakeholder opinion and interest in the MINI robot were positive. The most important (expected) facilitating factors mentioned by stakeholders appeared to be human resources, funding, the impact of the MINI robot on the users and programs of the MCs, characteristics of the innovation, and collaboration with other care and welfare organizations. However, the (expected) barriers mentioned concerned the physical context and functionalities of the MINI robot, the user context, and MC activity policies. Conclusions: The findings will inform professional stakeholders, such as MC directors and managers, as well as care and welfare organizations, on the practicality of using the MINI robot in MCs. Furthermore, our research will aid MINI robot developers in tailoring its features to PwD?s preferences and demands and MC policies, which will contribute to the MINI robot?s effective adoption and deployment. UR - https://www.jmir.org/2023/1/e44125 UR - http://dx.doi.org/10.2196/44125 UR - http://www.ncbi.nlm.nih.gov/pubmed/37531190 ID - info:doi/10.2196/44125 ER - TY - JOUR AU - Fields, L. Noelle AU - Xu, Ling AU - Williams, C. Ishan AU - Gaugler, E. Joseph AU - Cipher, J. Daisha PY - 2023/7/24 TI - The Senior Companion Program Plus for African American Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e49679 VL - 12 KW - Alzheimer disease KW - dementia KW - lay provider KW - senior companion KW - volunteer KW - intervention KW - culturally informed KW - African American KW - family caregivers N2 - Background: Alzheimer disease and related dementias (ADRD) pose significant challenges as chronic health conditions in the United States. Additionally, there are notable disparities in the diagnosis and prevalence of ADRD among diverse populations. Specifically, African American populations have a higher risk of developing late-onset ADRD than White people, and missed diagnoses of ADRD are more common among older African American populations than older White populations. These disparities also impact African American ADRD family caregivers. Objective: The overall goal of this project is to develop a culturally informed, lay provider psychoeducational intervention named Senior Companion Program Plus (SCP Plus), which is specifically designed for African American ADRD caregivers and is potentially accessible, affordable, and sustainable. Methods: In the proposed explanatory sequential mixed methods study, a randomized controlled trial will be used that includes 114 African American family caregivers of a relative with ADRD who will participate in the 3-month SCP Plus program. Results: The study was funded on September 15, 2018, by the National Institutes of Health (1R15AG058182-01A1). Data collection began on May 16, 2019, but due to COVID-19 restrictions, ended 12 months into the planned 27-month recruitment period on March 31, 2023. The study was completed in June 30, 2023, and currently the results are being analyzed. Conclusions: The SCP Plus offers promise as an intervention that utilizes an existing platform for the delivery of a lay provider intervention and offers a novel approach for addressing gaps in accessible, community-based support for caregivers of people with ADRD. Trial Registration: ClinicalTrials.gov NCT03602391; https://classic.clinicaltrials.gov/ct2/show/NCT03602391 International Registered Report Identifier (IRRID): RR1-10.2196/49679 UR - https://www.researchprotocols.org/2023/1/e49679 UR - http://dx.doi.org/10.2196/49679 UR - http://www.ncbi.nlm.nih.gov/pubmed/37486759 ID - info:doi/10.2196/49679 ER - TY - JOUR AU - Silaule, Olindah AU - Adams, Fasloen AU - Nkosi, Gloria Nokuthula PY - 2023/7/24 TI - Strategies for Alleviating the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Transitional Countries: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e44268 VL - 12 KW - burden KW - caregiver burden KW - caregiver care KW - caregiver intervention KW - caregiver stress KW - caregiver KW - developing country KW - guidelines KW - implementation strategy KW - informal carers KW - mental disorder KW - mental well-being KW - review method KW - rural KW - scoping review KW - support strategies N2 - Background: Caregiver burden is highly prevalent among the informal caregivers of persons with severe mental disorders (SMDs). As such, strategies to support informal caregivers are necessary to enable them to cope with their caregiving role. Currently, there is limited evidence on the extent of existing strategies for supporting informal caregivers of persons with SMDs in transitional countries. Objective: This study presents a scoping review protocol to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. Methods: This scoping review will be conducted using the Joanna Briggs Institute?s methodology for scoping reviews. The participants, concept, and context framework will be used to select relevant studies. This review will include studies on strategies for addressing caregiver burden among informal caregivers, with a specific focus on studies outlining caregiver interventions, caregiver support, and policies with strategies for supporting informal caregivers of persons with SMDs. Relevant studies conducted in transitional countries will be considered for inclusion. There will be no restrictions on publication type or design. Published literature will be accessed by searching electronic databases, including PubMed, MEDLINE, CINAHL, and PsycINFO; ProQuest will be used to access gray literature. Additionally, the reference lists of key studies will be reviewed to identify studies for inclusion. The search will be restricted to articles published between 2011 and 2021. Two reviewers will work independently to screen all abstracts and full texts for inclusion in line with the set inclusion criteria. Extracted data will be categorized and described using descriptive qualitative content analysis. Results: This protocol will guide a scoping review to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. The main results of this scoping review will synthesize evidence from peer-reviewed and gray literature sources outlining various services and interventions for supporting informal caregivers of people with SMDs in transitional countries. In addition, existing gaps in the literature will be identified to inform future studies. Conclusions: The increase in caregiver burden among informal caregivers in mental health warrants the development and implementation of strategies for alleviating the burden. This scoping review aims to increase awareness on the various services and intervention strategies for alleviating burden among informal caregivers in transitional countries. International Registered Report Identifier (IRRID): RR1-10.2196/44268 UR - https://www.researchprotocols.org/2023/1/e44268 UR - http://dx.doi.org/10.2196/44268 UR - http://www.ncbi.nlm.nih.gov/pubmed/37486756 ID - info:doi/10.2196/44268 ER - TY - JOUR AU - Watland, Solbjørg AU - Solberg Nes, Lise AU - Hanson, Elizabeth AU - Ekstedt, Mirjam AU - Stenberg, Una AU - Børøsund, Elin PY - 2023/4/25 TI - The Caregiver Pathway, a Model for the Systematic and Individualized Follow-up of Family Caregivers at Intensive Care Units: Development Study JO - JMIR Form Res SP - e46299 VL - 7 KW - caregivers KW - next of kin KW - relatives KW - family-centered care KW - digital assessment tool KW - nurse intervention KW - intensive care unit KW - ICU KW - post?intensive care syndrome-Family KW - PICS-F KW - empower KW - support KW - follow-up KW - health promotion N2 - Background: Family caregivers of patients who are critically ill have a high prevalence of short- and long-term symptoms, such as fatigue, anxiety, depression, symptoms of posttraumatic stress, and complicated grief. These adverse consequences following a loved one?s admission to an intensive care unit (ICU) are also known as post?intensive care syndrome-family. Approaches such as family-centered care provide recommendations for improving the care of patients and families, but models for family caregiver follow-up are often lacking. Objective: This study aims to develop a model for structuring and individualizing the follow-up of family caregivers of patients who are critically ill, starting from the patients? ICU admission to after their discharge or death. Methods: The model was developed through a participatory co-design approach using a 2-phased iterative process. First, the preparation phase included a meeting with stakeholders (n=4) for organizational anchoring and planning, a literature search, and interviews with former family caregivers (n=8). In the subsequent development phase, the model was iteratively created through workshops with stakeholders (n=10) and user testing with former family caregivers (n=4) and experienced ICU nurses (n=11). Results: The interviews revealed how being present with the patient and receiving adequate information and emotional care were highly important for family caregivers at an ICU. The literature search underlined the overwhelming and uncertain situation for the family caregivers and identified recommendations for follow-up. On the basis of these recommendations and findings from the interviews, workshops, and user testing, The Caregiver Pathway model was developed, encompassing 4 steps: within the first few days of the patient?s ICU stay, the family caregivers will be offered to complete a digital assessment tool mapping their needs and challenges, followed by a conversation with an ICU nurse; when the patient leaves the ICU, a card containing information and support will be handed out to the family caregivers; shortly after the ICU stay, family caregivers will be offered a discharge conversation by phone, focusing on how they are doing and whether they have any questions or concerns; and within 3 months after the ICU stay, an individual follow-up conversation will be offered. Family caregivers will be invited to talk about memories from the ICU and reflect upon the ICU stay, and they will also be able to talk about their current situation and receive information about relevant support. Conclusions: This study illustrates how existing evidence and stakeholder input can be combined to create a model for family caregiver follow-up at an ICU. The Caregiver Pathway can help ICU nurses improve family caregiver follow-up and aid in promoting family-centered care, potentially also being transferrable to other types of family caregiver follow-up. UR - https://formative.jmir.org/2023/1/e46299 UR - http://dx.doi.org/10.2196/46299 UR - http://www.ncbi.nlm.nih.gov/pubmed/37097744 ID - info:doi/10.2196/46299 ER - TY - JOUR AU - Thomas, Missy AU - Henderson, Dean AU - Trudel, Chantal AU - Thomas, Neil PY - 2023/4/20 TI - Usability of a Community-Based Dementia Resource Website: Mixed Methods Study JO - JMIR Aging SP - e40762 VL - 6 KW - dementia KW - caregivers KW - eHealth KW - community resources N2 - Background: Many individuals living with dementia want to live in their own homes for as long as possible. To do so, they frequently require assistance with activities of daily living, which is often provided by friends and relatives acting as informal care partners. In Canada, many informal care partners are currently overworked and overwhelmed. Although community-based dementia-inclusive resources are available to support them, care partners often struggle to find them. Dementia613.ca was created to make the process of finding community dementia-inclusive resources simpler and more straightforward by bringing them together in one eHealth website. Objective: The objective of our study was to determine if dementia613.ca is meeting the goal of connecting care partners and persons living with dementia to dementia-inclusive resources in their community. Methods: A review and assessment of the website was conducted using 3 evaluation methods: web analytics, questionnaires, and task analysis. Google Analytics was used to collect data related to website use over a 9-month period. Data on site content and user characteristics were collected. Furthermore, 2 web-based self-administered questionnaires were developed: one intended for care partners and persons living with dementia, and the other intended for businesses and organizations interested in serving persons living with dementia. Both gathered data on user characteristics and included standard questions used in website evaluations. Responses were collected over a 6-month period. Scenarios, tasks, and questions were developed for the moderated, remote, and task-analysis sessions. These tasks and questions determined how effectively persons living with dementia and their care partners can use dementia613.ca. Overall, 5 sessions were held with persons experiencing moderate cognitive decline and with care partners of persons living with dementia. Results: This evaluation showed that the idea behind dementia613.ca is strong and appeals to persons living with dementia, their care partners, and the businesses and organizations serving this market. Participants indicated that it is a useful community resource that meets a previously unfulfilled need in the area, and highlighted the benefits of bringing community resources together on 1 website. In our questionnaire, >60% (19/29, 66%) of people living with dementia and their care partners and 70% (7/10) of businesses and organizations agreed that the website made it easier to find relevant dementia-inclusive resources. There is room for improvement; participants indicated that the navigation and search features could be further developed. Conclusions: We believe that the dementia613.ca model could be used to inspire and guide the creation of dementia resource websites in other regions in Ontario and beyond. The framework behind it is generalizable and could be replicated to help care partners and persons living with dementia find local resources more easily. UR - https://aging.jmir.org/2023/1/e40762 UR - http://dx.doi.org/10.2196/40762 UR - http://www.ncbi.nlm.nih.gov/pubmed/37079355 ID - info:doi/10.2196/40762 ER - TY - JOUR AU - Hong, Alicia Y. AU - Shen, Kang AU - Han, Hae-Ra AU - Ta Park, Van AU - Bagchi, Pramita AU - Lu, Kate Huixing AU - Chen, Hsiaoyin AU - Wang, Huei-yu Judy PY - 2023/4/5 TI - A WeChat-based Intervention, Wellness Enhancement for Caregivers (WECARE), for Chinese American Dementia Caregivers: Pilot Assessment of Feasibility, Acceptability, and Preliminary Efficacy JO - JMIR Aging SP - e42972 VL - 6 KW - Alzheimer disease KW - dementia KW - caregiver KW - Chinese American KW - mHealth intervention KW - social media KW - WeChat KW - mHealth KW - mobile health KW - informal care KW - caregiving KW - family care KW - spousal care KW - minority KW - ethnic KW - cultural KW - Chinese N2 - Background: Chinese American family caregivers of persons with dementia experience high rates of psychosocial distress and adverse health outcomes. Due to their immigrant and minority status, they face substantial obstacles to care and support, including stigma and misperception of dementia, limited knowledge and use of welfare and services, and poor social support. Few interventions have been developed or tested for this vulnerable population. Objective: This study aims to pilot-test the Wellness Enhancement for Caregivers (WECARE) intervention, a culturally tailored program delivered via WeChat, a social media app highly popular in the Chinese population. The 7-week WECARE was designed specifically for Chinese American dementia caregivers to improve their caregiving skills, reduce stress, and enhance psychosocial well-being. Feasibility, acceptability, and preliminary efficacy of the WECARE were assessed in this pilot. Methods: A total of 24 Chinese American family caregivers of persons with dementia were recruited for a pre-post 1-arm trial of the WECARE. By subscribing to the WECARE official account, participants received interactive multimedia programs on their WeChat account multiple times a week for 7 weeks. A backend database automatically delivered program components and tracked user activities. Three online group meetings were organized to facilitate social networking. Participants completed a baseline and a follow-up survey. Feasibility was assessed by the follow-up rate and curriculum completion rate; acceptability was assessed by user satisfaction and perceived usefulness of the program; and efficacy was assessed with pre-post differences in 2 primary outcomes of depressive symptoms and caregiving burden. Results: The intervention was completed by 23 participants with a retention rate of 96%. Most of them (n=20, 83%) were older than 50 years and the majority (n=17, 71%) were female. The backend database revealed that the mean curriculum completion rate was 67%. Participants also reported high rates of user satisfaction and perceived usefulness of the intervention and high ratings of weekly programs. The intervention led to significant improvement in participants? psychosocial health outcomes; their depressive symptoms reduced from 5.74 to 3.35 with an effect size of ?0.89 and caregiving burden decreased from 25.78 to 21.96 with an effect size of ?0.48. Conclusions: This pilot study suggests that WeChat-based WECARE intervention was feasible and acceptable; it also demonstrated initial efficacy in improving psychosocial well-being in Chinese American dementia caregivers. Further research with a control group is needed to assess its efficacy and effectiveness. The study highlights the need for more culturally appropriate mobile health interventions for Chinese American family caregivers of persons with dementia. UR - https://aging.jmir.org/2023/1/e42972 UR - http://dx.doi.org/10.2196/42972 UR - http://www.ncbi.nlm.nih.gov/pubmed/37018042 ID - info:doi/10.2196/42972 ER - TY - JOUR AU - Gómez-Morales, Abigail AU - Coon, David AU - Joseph, P. Rodney AU - Pipe, Teri PY - 2023/3/31 TI - Behind the Scenes of a Technologically Enhanced Intervention for Caregivers of People With Dementia: Protocol for a Feasibility and Acceptability Study JO - JMIR Res Protoc SP - e42655 VL - 12 KW - Alzheimer's disease KW - dementia KW - virtual reality KW - information and communication technology KW - ICT KW - caregivers KW - pilot study N2 - Background: Alzheimer's disease affects 55 million people worldwide. As the disease progresses, these individuals require a devoted caregiver, often a family member, who provides evolving complex care. Caregivers can experience a variety of ongoing stressors, resulting in reductions in caregiver emotional well-being (and other quality-of-life indicators). Information and communication technologies provide an excellent opportunity to train caregivers remotely and help them to manage these stressors and related distress. Objective: This protocol describes the theoretical rationale, study design, and methods of a new, technologically enhanced psychoeducational skill-building intervention for caregivers of people with dementia that includes a virtual reality component. Methods: Through Alzheimer?s Eyes is a 4-week, single-arm, pre-post test pilot study consisting of 4 sessions of 90 minutes each that are delivered by videoconferencing. These sessions include a weekly virtual reality experience characterizing the journey of an older Latina with Alzheimer's disease from her perspective to help caregivers see through the eyes of a person with dementia. The 4 sessions cover the skill-training topics of communication, managing challenging behaviors and unhelpful thoughts, the importance of self-care, and mindfulness?all of which are key components designed to reduce stress and distress in family caregivers. Individual interviews conducted before and after the intervention gather participant insights into the intervention, evaluate its feasibility and acceptability, and assess its impact on key outcomes. Results: Data collection for the study started in January 2022, and the results are expected to be submitted for publication in the second half of 2023. Twenty caregivers from the United States have completed the workshop to date. Preliminary data gathered from these participants support the intervention?s feasibility and acceptability. Conclusions: Through Alzheimer?s Eyes leverages existing technology combined with psychoeducational skill building to help caregivers manage their stress, regardless of their location. International Registered Report Identifier (IRRID): DERR1-10.2196/42655 UR - https://www.researchprotocols.org/2023/1/e42655 UR - http://dx.doi.org/10.2196/42655 UR - http://www.ncbi.nlm.nih.gov/pubmed/37000480 ID - info:doi/10.2196/42655 ER - TY - JOUR AU - Brown, L. Ellen AU - Ruggiano, Nicole AU - Allala, Chaithra Sai AU - Clarke, J. Peter AU - Davis, Debra AU - Roberts, Lisa AU - Framil, Victoria C. AU - Muñoz, Hernandez Maríateresa Teri AU - Hough, Strauss Monica AU - Bourgeois, S. Michelle PY - 2023/3/15 TI - Developing a Memory and Communication App for Persons Living With Dementia: An 8-Step Process JO - JMIR Aging SP - e44007 VL - 6 KW - health technology KW - interdisiplinary team KW - older adults KW - dementia KW - communication KW - communication aids for disabled persons KW - communication boards KW - app KW - Alzheimer disease KW - family KW - caregiver KW - clinical care KW - development KW - speech KW - psychosocial intervention KW - software design N2 - International Registered Report Identifier (IRRID): RR2-10.3928/19404921-20210825-02 UR - https://aging.jmir.org/2023/1/e44007 UR - http://dx.doi.org/10.2196/44007 UR - http://www.ncbi.nlm.nih.gov/pubmed/36920462 ID - info:doi/10.2196/44007 ER - TY - JOUR AU - Choukou, Mohamed-Amine AU - Olatoye, Funminiyi AU - Urbanowski, Reg AU - Caon, Maurizio AU - Monnin, Caroline PY - 2023/1/11 TI - Digital Health Technology to Support Health Care Professionals and Family Caregivers Caring for Patients With Cognitive Impairment: Scoping Review JO - JMIR Ment Health SP - e40330 VL - 10 KW - digital health KW - behavior change KW - mental health KW - cognitive impairment N2 - Background: Digital health technology is a promising way of supporting health care providers and family caregivers as they care for patients with cognitive impairment. Objective: This scoping review aimed to portray the use of digital health technology to assist health care providers and family caregivers in caring for patients with cognitive impairment who live in the community or in a facility. Methods: We conducted a scoping review of peer-reviewed scientific articles available in MEDLINE, PsycINFO, Scopus, and CINAHL with Full Text, as well as gray literature available in preprint servers, theses depositories, and various national and international dementia organizations? websites. The search yielded 975 articles, of which we included 7 (0.7%) in the review. Results: Of the 7 interventions included in the retrieved manuscripts, 2 (29%) were digital calendar reminder systems to support activities of daily living and medication management; 2 (29%) were apps on tablet devices to simulate the presence of family before therapy interventions; 1 (14%) was a social robot used in therapeutic sessions to include elements of musicotherapy, reminiscence, cognitive games, and relaxation; 1 (14%) was a commercially available computer system that provides access to various recreational leisure activities; and 1 (14%) was a web-based self-management support system that helps family caregivers to deal with behavior changes in a relative with dementia. Of the 7 articles, only 1 (14%) reported on the use of a behavior change theory, namely a comprehensive process model of engagement coupled with cognitive stimulation therapy. Conclusions: Literature on the topic is scarce, recent, and heterogeneous. There is a clear need for a theoretical framework to conceptualize and govern the use of behavior change models that incorporate technology for patients with cognitive impairment. UR - https://mental.jmir.org/2023/1/e40330 UR - http://dx.doi.org/10.2196/40330 UR - http://www.ncbi.nlm.nih.gov/pubmed/36630174 ID - info:doi/10.2196/40330 ER - TY - JOUR AU - Harris, Melissa AU - Van Houtven, Courtney AU - Hastings, Susan PY - 2022/12/14 TI - Development of a Home-Based Stress Management Toolkit for Dementia Caring Dyads: Protocol for a Pilot Intervention Development and Feasibility Study JO - JMIR Res Protoc SP - e43098 VL - 11 IS - 12 KW - dementia KW - stress KW - caregiver KW - dyad KW - intervention KW - nonpharmacologic N2 - Background: People living with dementia (PLWD) and their care partners (dementia caring dyads) are at a heightened risk of experiencing stress-related symptoms and conditions. Yet, many dyadic stress management interventions have had limited uptake by health care systems and in the community. An intervention that combines simple, safe, easy-to-use, nonpharmacologic tools (eg, animatronic social pets, weighted blankets and garments, aromatherapy and bright light therapy devices, acupressure, and massage tools) that can be used in the home may be a promising approach to promote stress management among dementia caring dyads. Objective: The proposed study aims to develop and user test a dyadic toolkit intervention composed of simple, tangible stress management tools for community-dwelling PLWD and their care partners. This study will also explore the feasibility of collecting several stress-related outcome measures to inform measurement selection for future studies. Methods: A human-centered design (HCD) approach will be used to increase the likelihood of developing an intervention that will be translatable to real-world settings. This study consists of 2 phases. The first phase will address the discover, define, and design stages of HCD using qualitative focus groups with dementia caring dyads (N=12-16 dyads). Dyadic focus groups (3-4 groups anticipated) will be convened to understand participants? stress experiences and to co-design a stress management toolkit prototype. Rapid qualitative analysis will be used to analyze focus group data. In phase 2, the toolkit prototype will be user tested for 2 weeks in a new sample to address the validation step of HCD. A within-subjects (n=10 dyads), pre-post design will be used with measures of usability (frequency of toolkit use), feasibility (enrollment and withdrawal rates, adverse events/injuries), and acceptability (satisfaction, benefit) collected via questionnaires (at the end of weeks 1 and 2 of user testing) and focus groups (n=3-4 dyads/group at the end of week 2). The feasibility of collecting participant-reported, stress-related outcomes (neuropsychiatric symptoms of dementia, caregiver stress, dyadic relationship strain) and salivary cortisol as a physiologic measure of stress will be assessed at baseline and after user testing. Results: This study will yield a working prototype of a stress management toolkit for dementia caring dyads, as well as preliminary data to support the feasibility and acceptability of the intervention. User testing will elucidate areas to refine the prototype and provide data to inform preliminary testing of the intervention. As of September 2022, this study has received institutional ethics board approval with phase 1 recruitment anticipated to begin January 2023. Conclusions: Few interventions have focused on combining simple, safe, low burden tools to promote stress management among community-dwelling dementia caring dyads. By involving families and exploring feasibility and acceptability at the onset of development, this intervention will have greater potential to be implemented and sustained in the future. Trial Registration: ClinicalTrials.gov NCT05465551; https://clinicaltrials.gov/ct2/show/NCT05465551 International Registered Report Identifier (IRRID): PRR1-10.2196/43098 UR - https://www.researchprotocols.org/2022/12/e43098 UR - http://dx.doi.org/10.2196/43098 UR - http://www.ncbi.nlm.nih.gov/pubmed/36399169 ID - info:doi/10.2196/43098 ER - TY - JOUR AU - Pasquini, Sara AU - Margaritini, Arianna AU - Gambella, Elena AU - Di Rosa, Mirko AU - Maranesi, Elvira AU - Bevilacqua, Roberta AU - Civerchia, Patrizia AU - Pelliccioni, Giuseppe PY - 2022/11/11 TI - A Psychosocial Intervention for Supporting Informal Caregivers of Older People With Alzheimer Disease: Protocol for the InnFamiglia Randomized Controlled Trial JO - JMIR Res Protoc SP - e37496 VL - 11 IS - 11 KW - Alzheimer disease KW - caregiver burden KW - psychosocial intervention KW - self-help KW - emotional support KW - randomized controlled trial KW - dementia N2 - Background: Dementia is a neurodegenerative syndrome characterized by impaired cognitive functions associated with psychological and behavioral disorders. The informal caregiver has a central role in the life of the person with dementia. Committing a large part of the day to caring for the assisted person inevitably has an effect on the caregiver?s life. Objective: The aim of this study is to analyze the impact of a psychosocial intervention dedicated to a group of informal caregivers of patients with Alzheimer disease. The intervention will be guided by a trained psychologist who will facilitate the participants? expression of their emotional states, as compared to a traditional self-help group. Methods: The intervention described in this paper was designed and developed for the project INNovazione sociale e tecnologica per le FAMIGLIE che assistono malati affetti da Alzheimer (InnFamiglia). The study is designed as a randomized controlled trial (RCT). The RCT includes an experimental group, in which the participants will undertake the psychosocial intervention, and a control group, where participants will receive support according to traditional self-help methodology. Interventions for both groups will last 4 months and will be comprised of 16 sessions. Results: Participant recruitment, enrollment, and data collection began in 2021. Enrollment continued until September 2022, at which time the last group began the intervention. Data collection will be completed by December 2022, and data analysis will be completed by March 2023. The study findings will be published in peer-reviewed scientific journals and will be presented at scientific meetings. Summaries of the results will also be made available to investigators for dissemination within their clinics. Conclusions: We hypothesize that the experimental group will be more effective in managing caregiver burden and coping strategies and that this will improve the perception of well-being, anxiety, and depression among caregivers. Our study aims to compare two groups receiving different interventions: a self-help group and a psychosocial group with elements of emotional support. This study may also give us more information about the most appropriate ways to support and help caregivers of people with dementia. International Registered Report Identifier (IRRID): DERR1-10.2196/37496 UR - https://www.researchprotocols.org/2022/11/e37496 UR - http://dx.doi.org/10.2196/37496 UR - http://www.ncbi.nlm.nih.gov/pubmed/36367770 ID - info:doi/10.2196/37496 ER - TY - JOUR AU - Jose, Ambily AU - Sasseville, Maxime AU - Dequanter, Samantha AU - Gorus, Ellen AU - Giguère, Anik AU - Bourbonnais, Anne AU - Abbasgholizadeh Rahimi, Samira AU - Buyl, Ronald AU - Gagnon, Marie-Pierre PY - 2022/11/4 TI - Existing eHealth Solutions for Older Adults Living With Neurocognitive Disorders (Mild and Major) or Dementia and Their Informal Caregivers: Protocol for an Environmental Scan JO - JMIR Res Protoc SP - e41015 VL - 11 IS - 11 KW - dementia KW - eHealth solutions KW - mild cognitive impairment (MCI) KW - environmental scan KW - digital health N2 - Background: Dementia is one of the main public health priorities for current and future societies worldwide. Over the past years, eHealth solutions have added numerous promising solutions to enhance the health and wellness of people living with dementia-related cognitive problems and their primary caregivers. Previous studies have shown that an environmental scan identifies the knowledge-to-action gap meaningfully. This paper presents the protocol of an environmental scan to monitor the currently available eHealth solutions targeting dementia and other neurocognitive disorders against selected attributes. Objective: This study aims to identify the characteristics of currently available eHealth solutions recommended for older adults with cognitive problems and their informal caregivers. To inform the recommendations regarding eHealth solutions for these people, it is important to obtain a comprehensive view of currently available technologies and document their outcomes and conditions of success. Methods: We will perform an environmental scan of available eHealth solutions for older adults with cognitive impairment or dementia and their informal caregivers. Potential solutions will be initially identified from a previous systematic review. We will also conduct targeted searches for gray literature on Google and specialized websites covering the regions of Canada and Europe. Technological tools will be scanned based on a preformatted extraction grid. The relevance and efficiency based on the selected attributes will be assessed. Results: We will prioritize relevant solutions based on the needs and preferences identified from a qualitative study among older adults with cognitive impairment or dementia and their informal caregivers. Conclusions: This environmental scan will identify eHealth solutions that are currently available and scientifically appraised for older adults with cognitive impairment or dementia and their informal caregivers. This knowledge will inform the development of a decision support tool to assist older adults and their informal caregivers in their search for adequate eHealth solutions according to their needs and preferences based on trustable information. International Registered Report Identifier (IRRID): DERR1-10.2196/41015 UR - https://www.researchprotocols.org/2022/11/e41015 UR - http://dx.doi.org/10.2196/41015 UR - http://www.ncbi.nlm.nih.gov/pubmed/36331531 ID - info:doi/10.2196/41015 ER - TY - JOUR AU - Jones, Steven AU - Atanasova, Dimitrinka AU - Dodd, Susanna AU - Flowers, Susan AU - Rosala-Hallas, Anna AU - Robinson, Heather AU - Semino, Elena AU - Lobban, Fiona PY - 2022/10/20 TI - Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study JO - JMIR Ment Health SP - e35837 VL - 9 IS - 10 KW - psychosis KW - bipolar disorder KW - relative KW - carer KW - mental health KW - forum KW - online KW - digital health KW - Relatives Education and Coping Toolkit KW - REACT KW - trial N2 - Background: Relatives of people with psychosis or bipolar disorder experience high levels of distress but are typically not offered the support they need. Online peer forums may offer a solution, but knowledge about who uses them, how, and why is limited. This study reported on online forum use during the Relatives Education and Coping Toolkit (REACT) trial. Objective: We aimed to report who used the forum and why; how sociodemographic factors are associated with participation; the relationship among frequency, type of use, and outcomes; and how the forum was used. Methods: The relationships between key sociodemographic characteristics, levels of forum use, and distress were statistically analyzed. We used thematic and semantic analyses to understand the reasons for relatives joining the forum and the key topics initiated by them. We also used the University Centre for Computer Corpus Research on Language Semantic Analysis System to compare how relatives and REACT supporters (moderators) used the forum. Results: A total of 348 participants with full forum use data from REACT were included in this study. The forum was accessed by 59.4% (207/348) of the relatives across the entire age range, with no significant associations between sociodemographic factors and forum participation, or between level or type of use and relatives? distress levels. Relatives joined the forum primarily to find people in similar circumstances, express concerns, and talk about stressful events. Relatives were most concerned about recent events, negative emotions linked to caring, experiences of conflict or threat, and concerns about suicide. These posts underscored both the challenges the relatives were facing and the fact that they felt safe sharing them in this context. Conclusions: Although only a proportion of REACT participants engaged actively with its forum, they were widely distributed across age and other sociodemographic groupings. Relatives used the forum for information, support, and guidance and to offer detailed information about their experiences. The topics raised highlighted the burden carried by relatives and the potential value of easy-access, moderated, peer-supported forums in helping relatives to manage the challenges they faced. UR - https://mental.jmir.org/2022/10/e35837 UR - http://dx.doi.org/10.2196/35837 UR - http://www.ncbi.nlm.nih.gov/pubmed/36264621 ID - info:doi/10.2196/35837 ER - TY - JOUR AU - Zaslavsky, Oleg AU - Kaneshiro, Jasmine AU - Chu, Frances AU - Teng, Andrew AU - Domoto-Reilly, Kimiko AU - Chen, T. Annie PY - 2022/7/29 TI - Virtual Intervention for Caregivers of Persons With Lewy Body Dementia: Pilot Quasi-Experimental Single-Arm Study JO - JMIR Form Res SP - e37108 VL - 6 IS - 7 KW - dementia KW - caregiver KW - internet based KW - digital health KW - digital intervention KW - eHealth KW - feasibility KW - web-based KW - peer support KW - didactic training KW - caregiving KW - informal care KW - spousal care KW - remote intervention KW - Lewy body KW - Lewy bodies KW - discussion forum KW - discussion platform KW - online support KW - distress KW - stress reduction KW - online discussion KW - support group KW - discussion group KW - burden KW - depression KW - depressive symptom KW - lonely KW - loneliness KW - mental health N2 - Background: Compared to other types of dementia, family caregivers of people with Lewy body dementia (LBD) report higher stress levels and more severe depressive symptoms. Although several digital support interventions for caregivers of persons with dementia exist, few target LBD specifically or leverage a fully remote and asynchronous approach suitable for pandemic circumstances. Objective: We performed a pilot evaluation of a digital intervention designed to help caregivers of people with LBD address challenges they have experienced, with the end goal of reducing psychological distress in this population. Methods: We recruited 15 family caregivers of people with LBD to participate in the quasi-experimental, single-arm, mixed methods study titled Virtual Online Communities for Aging Life Experience?Lewy Body Dementia (VOCALE-LBD). The study offers an 8-week web-based intervention that uses a digital discussion platform and involves moderation, peer-to-peer support, didactic training, and problem-solving skill enactment. Results: Participants? baseline characteristics were the following: mean age 66 (SD 8) years; 14 of 15 (93%) of them were female; all (15/15, 100%) were White; and 8 (53%) of them had at least a postgraduate degree. Throughout the intervention, participants engaged in weekly web-based discussions, generating a total of 434 posts (average 4 posts per week). Attrition was 20% (3/15). Upon study exit, participants showed the following average improvements: 3.0 (SD 6.0) in depression, 8.3 (SD 16.7) in burden, 2.9 (SD 6.8) in stress, and 0.3 (SD 0.8) in loneliness. When looking at the proportion of participants with clinically signi?cant improvement versus those with a worsening of ?0.5 SD for each outcome, we observed net improvements of 50% (6/12), 33% (4/12), 25% (3/12), and 25% (3/12) in depression, loneliness, burden, and stress, respectively. In terms of the benefits of participation, participants reported that participation helped them ?a great deal? to (1) improve their understanding of LBD (9/12, 75%), (2) gain confidence in dealing with difficult behaviors of the care recipient (6/12, 50%), and (3) improve in one?s abilities to provide care to the care recipient (4/12, 33%). Conclusions: The study generated promising feasibility and preliminary efficacy data for a low-cost, web-based intervention designed for caregivers of persons with LBD. Though the study was not powered for significance, we observed nominal average and net improvements in important psychological outcomes. Moreover, many caregivers reported that study participation helped them better understand the disease, feel more con?dent in dealing with difficult behaviors of the care recipient, and improve their ability to care for the care recipient. If validated in future studies, the intervention could be an accessible, on-demand resource for caregivers, enabling them to engage in moderated remote discussions with peers at their own convenience in terms of location, time of the day, and frequency. UR - https://formative.jmir.org/2022/7/e37108 UR - http://dx.doi.org/10.2196/37108 UR - http://www.ncbi.nlm.nih.gov/pubmed/35904843 ID - info:doi/10.2196/37108 ER - TY - JOUR AU - Naunton Morgan, Bethan AU - Windle, Gill AU - Sharp, Rebecca AU - Lamers, Carolien PY - 2022/7/22 TI - eHealth and Web-Based Interventions for Informal Carers of People With Dementia in the Community: Umbrella Review JO - J Med Internet Res SP - e36727 VL - 24 IS - 7 KW - dementia KW - Alzheimer disease KW - informal KW - family KW - carers KW - caregivers KW - internet KW - online KW - technology KW - interventions N2 - Background: The prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature. Objective: This umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community. Methods: PsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported. Results: A total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies. Conclusions: Mixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research. Trial Registration: PROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559 UR - https://www.jmir.org/2022/7/e36727 UR - http://dx.doi.org/10.2196/36727 UR - http://www.ncbi.nlm.nih.gov/pubmed/35867388 ID - info:doi/10.2196/36727 ER - TY - JOUR AU - Wu, Kuan-Ching AU - Su, Yan AU - Chu, Frances AU - Chen, T. Annie AU - Zaslavsky, Oleg PY - 2022/7/7 TI - Behavioral Change Factors and Retention in Web-Based Interventions for Informal Caregivers of People Living With Dementia: Scoping Review JO - J Med Internet Res SP - e38595 VL - 24 IS - 7 KW - dementia KW - informal caregivers KW - informal care KW - caregiving KW - retention KW - internet KW - web-based KW - behavior KW - intervention KW - review KW - scoping KW - health intervention KW - digital health KW - caregiver KW - psychological health KW - cognition KW - peer support KW - web-based intervention KW - taxonomy KW - aging KW - gerontology KW - older adult population KW - neurological disorder KW - behavior change technique KW - BCT KW - change technique N2 - Background: Web-based interventions aimed at supporting informal caregivers of people living with dementia have the potential to improve caregivers? well-being and psychological health. However, few interventions are widely implemented for this population, and none of the prior reviews have systematically examined the use of behavior change techniques (BCTs), theories, and agents in web-based interventions for informal caregivers of people living with dementia. To better understand this implementation gap, we reviewed the literature to map behavioral factors (BCTs, theories, and agents) deployed in the studies. Furthermore, because there is an emerging consensus that retention could be shaped by participant characteristics and behavioral factors, we explored relationships between these features and retention rates across studies. Objective: We pursued 3 objectives: to map behavioral factors involved in the web-based interventions for informal caregivers of people living with dementia; to examine the relationship between behavioral change elements and retention in the studies; and to examine the relationship between participant characteristics (gender, age, and spouse or adult children caregiver proportion) and study retention. Methods: We conducted a literature review using the following keywords and their corresponding Medical Subject Headings terms: dementia, caregivers, and web-based intervention. The time limits were January 1998 to March 2022. Using the BCTv1 taxonomy, which specifies active behavioral components in interventions, 2 coders collected, summarized, and analyzed the frequency distributions of BCTs. Similarly, they abstracted and analyzed participant characteristics, behavior change theories, behavior change agents, and retention rates in the studies. Results: The average age was 61.5 (SD 7.4) years, and the average proportion of spousal informal caregivers, adult children informal caregivers, and retention rates were 51.2% (SD 24.8%), 44.8% (SD 22%), and 70.4% (SD 17%), respectively. Only 53% (17/32) of the studies used behavior change theories, but 81% (26/32) included behavior change agents. The most common BCTv1 clusters were shaping knowledge and social support. The median number of BCTv1 clusters was 5 (IQR 3). We observed a negative correlation between the proportion of spousal informal caregivers and the retention rate (r=?0.45; P=.02) and between the number of BCTv1 clusters and retention rates (r=?0.47; P=.01). We also found that the proportion of adult children informal caregivers in the study was significantly and positively correlated with the retention rate (r=0.5; P=.03). No other participant characteristics or behavioral factors were associated with retention rates. Conclusions: We found that almost half of the studies were not informed by behavior change theories. In addition, spousal involvement and a higher number of BCTs were each associated with lower retention rates, while the involvement of adult children caregivers in the study was associated with higher retention. In planning future studies, researchers should consider matching participant characteristics with their intended intervention as the alignment might improve their retention rates. UR - https://www.jmir.org/2022/7/e38595 UR - http://dx.doi.org/10.2196/38595 UR - http://www.ncbi.nlm.nih.gov/pubmed/35797100 ID - info:doi/10.2196/38595 ER - TY - JOUR AU - Eckardt, Peter Jens PY - 2022/6/30 TI - Urgency for Digital Technologies to Support Caregivers. Comment on ?Telehealth-Based Psychoeducation for Caregivers: The Family Intervention in Recent-Onset Schizophrenia Treatment Study? JO - JMIR Ment Health SP - e40147 VL - 9 IS - 6 KW - schizophrenia KW - family psychoeducation KW - caregiver burden KW - recent-onset schizophrenia KW - telehealth UR - https://mental.jmir.org/2022/6/e40147 UR - http://dx.doi.org/10.2196/40147 UR - http://www.ncbi.nlm.nih.gov/pubmed/35771612 ID - info:doi/10.2196/40147 ER - TY - JOUR AU - Verstraeten, F. Helma M. AU - Ziylan, Canan AU - Gerritsen, L. Debby AU - Huijsman, Robbert AU - Nakanishi, Miharu AU - Smalbrugge, Martin AU - van der Steen, T. Jenny AU - Zuidema, U. Sytse AU - Achterberg, P. Wilco AU - Bakker, M. Ton J. E. PY - 2022/6/22 TI - Implementing a Personalized Integrated Stepped-Care Method (STIP-Method) to Prevent and Treat Neuropsychiatric Symptoms in Persons With Dementia in Nursing Homes: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e34550 VL - 11 IS - 6 KW - dementia KW - neuropsychiatric symptoms KW - caregiver KW - implementation KW - psychosocial intervention KW - nursing homes N2 - Background: Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often inadequately managed. Three proven effective methods for managing neuropsychiatric symptoms were integrated into a single intervention method: the STIP-Method, a personalized integrated stepped-care method to prevent and treat neuropsychiatric symptoms. The STIP-Method comprises 5 phases of clinical reasoning to neuropsychiatric symptoms and 4 stepped-care interventions and is supported with a web application. Objective: This study aims to identify the facilitators and barriers in the implementation of the STIP-Method in nursing homes. Methods: A mixed methods design within a participatory action research was used to implement the STIP-Method in 4 facilities of 2 Dutch nursing home organizations. In total, we aimed at participation of 160-200 persons with dementia and expected an intervention fidelity of 50% or more, based on earlier studies regarding implementation of effective psychosocial interventions to manage neuropsychiatric symptoms. All involved managers and professionals were trained in the principles of the STIP-Method and in using the web application. An advisory board of professionals, managers, and informal caregivers in each facility supported the implementation during 21 months, including an intermission of 6 months due to the COVID-19 pandemic. In these 6-weekly advisory board meetings, 2 researchers stimulated the members to reflect on progress of the implementation by making use of available data from patient records and the web application. Additionally, the 2 researchers invited the members to suggest how to improve the implementation. Data analysis will involve (1) analysis of facilitators and barriers to the implementation derived from verbatim text reports of advisory board meetings to better understand the implementation process; (2) analysis of patient records in accordance with multidisciplinary guidelines to neuropsychiatric symptoms: personalized, interdisciplinary, and proactive management of neuropsychiatric symptoms; (3) evaluation of the web application in terms of usability scores; (4) pre- and postimplementation analysis of patient records and the web application to evaluate the impact of the STIP-Method, such as changes in neuropsychiatric symptoms and informal caregiver burden. Results: We enrolled 328 persons with dementia. Data collection started in July 2019 and ended in December 2021. The first version of this manuscript was submitted in October 2021. The first results of data analysis are expected to be published in December 2022 and final results in June 2023. Conclusions: Our study may increase understanding of facilitators and barriers to the prevention and treatment of neuropsychiatric symptoms in nursing home residents with dementia by implementing the integrated STIP-Method. The need for well-designed implementation studies is of importance to provide nursing homes with optimal tools to prevent and treat neuropsychiatric symptoms. International Registered Report Identifier (IRRID): DERR1-10.2196/34550 UR - https://www.researchprotocols.org/2022/6/e34550 UR - http://dx.doi.org/10.2196/34550 UR - http://www.ncbi.nlm.nih.gov/pubmed/35731558 ID - info:doi/10.2196/34550 ER - TY - JOUR AU - McCrae, S. Christina AU - Curtis, F. Ashley AU - Cottle, Amelia AU - Beversdorf, B. David AU - Shenker, Joel AU - Mooney, P. Brian AU - Popescu, Mihail AU - Rantz, Marilyn AU - Groer, Maureen AU - Stein, Phyllis AU - Golzy, Mojgan AU - Stearns, A. Melanie AU - Simenson, Angelynn AU - Nair, Neetu AU - Rowe, A. Meredeth PY - 2022/6/14 TI - Impact of Web-Based Cognitive Behavioral Therapy for Insomnia on Stress, Health, Mood, Cognitive, Inflammatory, and Neurodegenerative Outcomes in Rural Dementia Caregivers: Protocol for the NiteCAPP CARES and NiteCAPP SHARES Randomized Controlled Trial JO - JMIR Res Protoc SP - e37874 VL - 11 IS - 6 KW - caregiver KW - CBT-I KW - cognition KW - dementia KW - inflammation KW - insomnia KW - neurodegeneration N2 - Background: Chronic insomnia affects up to 63% of family dementia caregivers. Research suggests that chronic insomnia prompts changes in central stress processing that have downstream negative effects on health and mood, as well as on cognitive, inflammatory, and neurodegenerative functioning. We hypothesize that cognitive behavioral therapy for insomnia (CBT-I) will reverse those downstream effects by improving insomnia and restoring healthy central stress processing. Rural caregivers are particularly vulnerable, but they have limited access to CBT-I; therefore, we developed an accessible digital version using community input (NiteCAPP CARES). Objective: This trial will evaluate the acceptability, feasibility, and short-term and long-term effects of NiteCAPP CARES on the sleep and stress mechanisms underlying poor caregiver health and functioning. Methods: Dyads (n=100) consisting of caregivers with chronic insomnia and their coresiding persons with dementia will be recruited from Columbia and surrounding areas in Missouri, United States. Participant dyads will be randomized to 4 weeks (plus 4 bimonthly booster sessions) of NiteCAPP CARES or a web-based sleep hygiene control (NiteCAPP SHARES). Participants will be assessed at baseline, after treatment, and 6- and 12-month follow-ups. The following assessments will be completed by caregivers: 1 week of actigraphy and daily diaries measuring sleep, Insomnia Severity Index, arousal (heart rate variability), inflammation (blood-derived biomarkers: interleukin-6 and C-reactive protein), neurodegeneration (blood-derived biomarkers: plasma amyloid beta [A?40 and A?42], total tau, and phosphorylated tau [p-tau181 and p-tau217]), cognition (Joggle battery, NIH Toolbox for Assessment of Neurological and Behavioral Function, and Cognitive Failures Questionnaire), stress and burden, health, and mood (depression and anxiety). Persons with dementia will complete 1 week of actigraphy at each time point. Results: Recruitment procedures started in February 2022. All data are expected to be collected by 2026. Full trial results are planned to be published by 2027. Secondary analyses of baseline data will be subsequently published. Conclusions: This randomized controlled trial tests NiteCAPP CARES, a web-based CBT-I for rural caregivers. The knowledge obtained will address not only what outcomes improve but also how and why they improve and for how long, which will help us to modify NiteCAPP CARES to optimize treatment potency and support future pragmatic testing and dissemination. Trial Registration: ClinicalTrials.gov NCT04896775; https://clinicaltrials.gov/ct2/show/NCT04896775 International Registered Report Identifier (IRRID): PRR1-10.2196/37874 UR - https://www.researchprotocols.org/2022/6/e37874 UR - http://dx.doi.org/10.2196/37874 UR - http://www.ncbi.nlm.nih.gov/pubmed/35700020 ID - info:doi/10.2196/37874 ER - TY - JOUR AU - Wilding, Clare AU - Morgan, Debra AU - Greenhill, Jennene AU - Perkins, David AU - O'Connell, E. Megan AU - Bauer, Michael AU - Farmer, Jane AU - Morley, Catherine AU - Blackberry, Irene PY - 2022/5/19 TI - Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial JO - JMIR Res Protoc SP - e33023 VL - 11 IS - 5 KW - virtual KW - dementia KW - community KW - rural KW - carer KW - caregiver KW - mobile phone N2 - Background: Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed. Objective: This study?s aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app?the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts. Methods: A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist. Results: Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study. Conclusions: The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf International Registered Report Identifier (IRRID): RR1-10.2196/33023 UR - https://www.researchprotocols.org/2022/5/e33023 UR - http://dx.doi.org/10.2196/33023 UR - http://www.ncbi.nlm.nih.gov/pubmed/35588366 ID - info:doi/10.2196/33023 ER - TY - JOUR AU - Mueser, T. Kim AU - Achtyes, D. Eric AU - Gogate, Jagadish AU - Mancevski, Branislav AU - Kim, Edward AU - Starr, Lynn H. PY - 2022/4/15 TI - Telehealth-Based Psychoeducation for Caregivers: The Family Intervention in Recent-Onset Schizophrenia Treatment Study JO - JMIR Ment Health SP - e32492 VL - 9 IS - 4 KW - schizophrenia KW - family psychoeducation KW - caregiver burden KW - recent-onset schizophrenia KW - telehealth N2 - Background: Schizophrenia is a lifelong illness that requires long-term treatment and caregiving. Family psychoeducation (FP) has been shown to lessen caregiver burden, improve caregiver functioning, and improve outcomes in patients. However, the impact of FP delivered specifically to caregivers on patient outcomes has not been well explored, particularly for early schizophrenia. Furthermore, there is a lack of research examining the benefits of telehealth-based psychoeducation for caregivers on either patient or caregiver outcomes. Objective: The Family Intervention in Recent-Onset Schizophrenia Treatment (FIRST) study is a randomized controlled trial of patients with schizophrenia spectrum disorders and their caregivers, which is designed to evaluate the effect of telehealth-based, caregiver-focused, study-provided psychoeducation versus usual care (UC) on patient treatment failure (TF). The impact of study-provided psychoeducation on caregiver burden is also investigated. Methods: Eligible patients and their designated caregivers were randomly assigned to either the study-provided psychoeducation (?16 sessions of telehealth-based psychoeducation over 6 months) or UC group, stratified by antipsychotic treatment (paliperidone palmitate or oral antipsychotic). The major TF events (ie, psychiatric hospitalization or intervention, arrest or incarceration, and suicide attempts) were assessed at 3, 6, and 12 months after baseline. A proportional means model using mean cumulative function was used to assess between-group differences in the mean cumulative number of TF events over 12 months. Caregiver burden was assessed using the Involvement Evaluation Questionnaire and 12-item Short Form Health Survey. Results: A total of 148 pairs of participants were enrolled in the study, of whom 96 (64.9%) patients and 94 (63.5%) caregivers completed the 12-month follow-up. The mean number of sessions in the study-provided psychoeducation group was 7.7 (SD 5.9). No differences were observed between the study-provided psychoeducation and UC groups in patient outcomes (rates of TF: 70% vs 67%; P=.90) or measures of caregiver burden (assessment of caregiver distress and physical and mental health). However, post hoc analyses revealed lower relapse rates in patients who received paliperidone palmitate than in those who received oral antipsychotics at all time points. Although the FIRST study did not meet the primary end point, several key lessons were identified to inform future caregiver-focused, telehealth-based FP interventions. Lack of study-provided psychoeducation, focus on caregiver-only intervention, difficulties with enrollment, and caregiver?treatment team coordination may have affected the outcomes of the FIRST study. Conclusions: Key insights from the FIRST study suggest the potential importance of supporting sufficient caregiver engagement; communication between clinicians, patients, and family members regarding treatment plans; and solidifying the relationship between clinicians providing psychoeducation to the caregiver and patient treatment team. Trial Registration: ClinicalTrials.gov NCT02600741; http://clinicaltrials.gov/ct2/show/NCT02600741 UR - https://mental.jmir.org/2022/4/e32492 UR - http://dx.doi.org/10.2196/32492 UR - http://www.ncbi.nlm.nih.gov/pubmed/35436231 ID - info:doi/10.2196/32492 ER - TY - JOUR AU - Coles, Theresa AU - Lucas, Nicole AU - Daniell, Erin AU - Sullivan, Caitlin AU - Wang, Ke AU - Olsen, M. Jennifer AU - Shepherd-Banigan, Megan PY - 2022/4/8 TI - Prioritizing Support Offered to Caregivers by Examining the Status Quo and Opportunities for Enhancement When Using Web-Based Self-reported Health Questionnaires: Descriptive Qualitative Study JO - JMIR Form Res SP - e30877 VL - 6 IS - 4 KW - caregiver KW - web-based questionnaires KW - self-report questionnaires KW - caregiver outcomes KW - intervention technology KW - patient-reported outcome measures N2 - Background: The Rosalynn Carter Institute for Caregivers (RCI) offers evidence-based interventions to promote caregivers? health and well-being. Trained coaches regularly meet with caregivers to offer education and instructions to improve caregiver health, build skill sets, and increase resilience. Two of these interventions, RCI Resources for Enhancing Alzheimer's Caregiver Health (REACH) and Operation Family Caregiver (OFC), use a set of caregiver-reported questionnaires to monitor caregivers? health status and needs. Objective: This study aims to describe how web-based assessment questionnaires are used to identify and monitor caregiver status in the RCI REACH and OFC programs and outlines perceived enhancements to the web-based system that could support caregiver-coach encounters by directing priorities. Methods: This was a descriptive, qualitative study. Data were collected via semistructured interviews with caregivers and coaches in the RCI REACH and OFC programs from July 2020 to October 2020. During the interviews, participants were asked to describe how the assessment questionnaires were used to inform caregiver-coach encounters, perceived usefulness of enhancements to web-based display, and preference for the structure of score results. The interviews were recorded, transcribed, and coded using structural and interpretive codes from a structured codebook. Qualitative content analysis was used to identify themes and summarize the results. Results: A total of 25 caregivers (RCI REACH: 13/25, 52%; OFC: 12/25, 48%) and 11 coaches (RCI REACH: 5/11, 45%; OFC: 6/11, 55%) were interviewed. Most caregivers indicated that the assessment questions were relevant to their caregiving experience. Some caregivers and coaches indicated that they thought the assessment should be administered multiple times throughout the program to evaluate the caregiver progress. Overall, caregivers did not want their scores to be compared with those of other caregivers, and there was heterogeneity in how caregivers preferred to view their results at the question or topic level. Coaches were uncertain as to which and how much of the results from the self-reported questionnaires should be shared with caregivers. Overall, the results were very similar, regardless of program affiliation (RCI REACH vs OFC). Conclusions: Web-based and procedural enhancements were identified to enrich caregiver-coach encounters. New and enhanced strategies for using web-based assessment questionnaires to direct priorities in the caregiver-coach encounters included integrating figures showing caregiver progress at the individual caregiver level, ability to toggle results through different figures focused on individual versus aggregate results, and support for interpreting scores. The results of this qualitative study will drive the next steps for RCI?s web-based platform and expand on current standards for administering self-reported questionnaires in clinical practice settings. UR - https://formative.jmir.org/2022/4/e30877 UR - http://dx.doi.org/10.2196/30877 UR - http://www.ncbi.nlm.nih.gov/pubmed/35394436 ID - info:doi/10.2196/30877 ER - TY - JOUR AU - Werner, E. Nicole AU - Brown, C. Janetta AU - Loganathar, Priya AU - Holden, J. Richard PY - 2022/3/29 TI - Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation JO - JMIR Mhealth Uhealth SP - e33863 VL - 10 IS - 3 KW - Alzheimer disease and related dementias KW - mobile app KW - mHealth KW - caregivers KW - dementia caregiving KW - eHealth KW - telehealth KW - mobile phone N2 - Background: Over 11 million care partners in the United States who provide care to people living with Alzheimer disease and related dementias (ADRD) cite persistent and pervasive unmet needs related to their caregiving role. The proliferation of mobile apps for care partners has the potential to meet care partners? needs, but the quality of apps is unknown. Objective: This study aims to evaluate the quality of publicly available apps for care partners of people living with ADRD and identify design features of low- and high-quality apps to guide future research and user-centered app development. Methods: We searched the US Apple App and Google Play stores with the criteria that included apps needed to be available in the US Google Play or Apple App stores, accessible to users out of the box, and primarily intended for use by an informal (family or friend) care partner of a person living with ADRD. We classified and tabulated app functionalities. The included apps were then evaluated using the Mobile App Rating Scale (MARS) using 23 items across 5 dimensions: engagement, functionality, aesthetics, information, and subjective quality. We computed descriptive statistics for each rating. To identify recommendations for future research and app development, we categorized rater comments on score-driving factors for each MARS rating item and what the app could have done to improve the item score. Results: We evaluated 17 apps. We found that, on average, apps are of minimally acceptable quality. Functionalities supported by apps included education (12/17, 71%), interactive training (3/17, 18%), documentation (3/17, 18%), tracking symptoms (2/17, 12%), care partner community (3/17, 18%), interaction with clinical experts (1/17, 6%), care coordination (2/17, 12%), and activities for the person living with ADRD (2/17, 12%). Of the 17 apps, 8 (47%) had only 1 feature, 6 (35%) had 2 features, and 3 (18%) had 3 features. The MARS quality mean score across apps was 3.08 (SD 0.83) on the 5-point rating scale (1=inadequate to 5=excellent), with apps scoring highest on average on functionality (mean 3.37, SD 0.99) and aesthetics (mean 3.24, SD 0.92) and lowest on average on information (mean 2.95, SD 0.95) and engagement (mean 2.76, SD 0.89). The MARS subjective quality mean score across apps was 2.26 (SD 1.02). Conclusions: We identified apps whose mean scores were more than 1 point below minimally acceptable quality, whereas some were more than 1 point above. Many apps had broken features and were rated as below acceptable for engagement and information. Minimally acceptable quality is likely to be insufficient to meet care partner needs. Future research should establish minimum quality standards across dimensions for care partner mobile apps. Design features of high-quality apps identified in this study can provide the foundation for benchmarking these standards. UR - https://mhealth.jmir.org/2022/3/e33863 UR - http://dx.doi.org/10.2196/33863 UR - http://www.ncbi.nlm.nih.gov/pubmed/35348467 ID - info:doi/10.2196/33863 ER - TY - JOUR AU - Peyton, Daniel AU - Goods, Marquelle AU - Hiscock, Harriet PY - 2022/2/10 TI - The Effect of Digital Health Interventions on Parents? Mental Health Literacy and Help Seeking for Their Child?s Mental Health Problem: Systematic Review JO - J Med Internet Res SP - e28771 VL - 24 IS - 2 KW - child KW - mental health KW - systematic review KW - caregiver KW - health literacy KW - digital health N2 - Background: Many children with mental health problems do not receive professional help. Despite the frequent use of digital health interventions (DHIs) such as websites or web-based service navigation platforms, their effects on parents? mental health literacy, help seeking, or uptake of professional services are unclear. Objective: This study aims to provide a systematic review and narrative synthesis to describe whether DHIs improve the aforementioned parental outcomes. Methods: Databases, including CINAHL, Embase, MEDLINE OVID, PsycINFO, and PubMed (2000-2020), were accessed. Studies were included if they evaluated quantitative changes in mental health literacy, help seeking, or the uptake of services by parents of children with mental health problems. Theoretical frameworks, sample sizes, participant demographics, recruitment, interventions, DHI use, results, and health economic measures were used for data extraction. Results: Of the 11,379 search results, 5 (0.04%) studies met the inclusion criteria. One randomized controlled trial found the reduced uptake of services after using a DHI coupled with a telephone coach for a child?s behavioral problem. Of 3 studies, 2 (66.7%) found statistically significant improvement in mental health literacy for attention-deficit/hyperactivity disorder but had no control group. One study found nonsignificant improvement in mental health literacy and help-seeking attitudes toward anxiety and depression compared with those in active controls. All studies were rated as having a high or serious risk of bias. Search results were affected because of a single reviewer screening articles, overall low-quality studies, and a lack of consistent nomenclature. Conclusions: There is no high-quality evidence that DHIs can improve parents? mental health literacy, help seeking, or uptake of services. More research is needed to evaluate DHIs by using rigorous study designs and consistent measures. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42020130074; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020130074 UR - https://www.jmir.org/2022/2/e28771 UR - http://dx.doi.org/10.2196/28771 UR - http://www.ncbi.nlm.nih.gov/pubmed/35142623 ID - info:doi/10.2196/28771 ER - TY - JOUR AU - Dunn, Taylor AU - Howlett, E. Susan AU - Stanojevic, Sanja AU - Shehzad, Aaqib AU - Stanley, Justin AU - Rockwood, Kenneth PY - 2022/1/27 TI - Patterns of Symptom Tracking by Caregivers and Patients With Dementia and Mild Cognitive Impairment: Cross-sectional Study JO - J Med Internet Res SP - e29219 VL - 24 IS - 1 KW - dementia KW - mild cognitive impairment KW - real-world evidence KW - patient-centric outcomes KW - machine learning KW - dementia stage KW - Alzheimer disease KW - symptom tracking N2 - Background: Individuals with dementia and mild cognitive impairment (MCI) experience a wide variety of symptoms and challenges that trouble them. To address this heterogeneity, numerous standardized tests are used for diagnosis and prognosis. myGoalNav Dementia is a web-based tool that allows individuals with impairments and their caregivers to identify and track outcomes of greatest importance to them, which may be a less arbitrary and more sensitive way of capturing meaningful change. Objective: We aim to explore the most frequent and important symptoms and challenges reported by caregivers and people with dementia and MCI and how this varies according to disease severity. Methods: This cross-sectional study involved 3909 web-based myGoalNav users (mostly caregivers of people with dementia or MCI) who completed symptom profiles between 2006 and 2019. To make a symptom profile, users selected their most personally meaningful or troublesome dementia-related symptoms to track over time. Users were also asked to rank their chosen symptoms from least to most important, which we called the symptom potency. As the stage of disease for these web-based users was unknown, we applied a supervised staging algorithm, previously trained on clinician-derived data, to classify each profile into 1 of 4 stages: MCI and mild, moderate, and severe dementia. Across these stages, we compared symptom tracking frequency, symptom potency, and the relationship between frequency and potency. Results: Applying the staging algorithm to the 3909 user profiles resulted in 917 (23.46%) MCI, 1596 (40.83%) mild dementia, 514 (13.15%) moderate dementia, and 882 (22.56%) severe dementia profiles. We found that the most frequent symptoms in MCI and mild dementia profiles were similar and comprised early hallmarks of dementia (eg, recent memory and language difficulty). As the stage increased to moderate and severe, the most frequent symptoms were characteristic of loss of independent function (eg, incontinence) and behavioral problems (eg, aggression). The most potent symptoms were similar between stages and generally reflected disruptions in everyday life (eg, problems with hobbies or games, travel, and looking after grandchildren). Symptom frequency was negatively correlated with potency at all stages, and the strength of this relationship increased with increasing disease severity. Conclusions: Our results emphasize the importance of patient-centricity in MCI and dementia studies and illustrate the valuable real-world evidence that can be collected with digital tools. Here, the most frequent symptoms across the stages reflected our understanding of the typical disease progression. However, the symptoms that were ranked as most personally important by users were generally among the least frequently selected. Through individualization, patient-centered instruments such as myGoalNav can complement standardized measures by capturing these infrequent but potent outcomes. UR - https://www.jmir.org/2022/1/e29219 UR - http://dx.doi.org/10.2196/29219 UR - http://www.ncbi.nlm.nih.gov/pubmed/35084341 ID - info:doi/10.2196/29219 ER - TY - JOUR AU - Bouldin, D. Erin AU - Delgado, Roxana AU - Peacock, Kimberly AU - Hale, Willie AU - Roghani, Ali AU - Trevino, Y. Amira AU - Viny, Mikayla AU - Wetter, W. David AU - Pugh, Jo Mary PY - 2022/1/5 TI - Military Injuries?Understanding Posttraumatic Epilepsy, Health, and Quality-of-Life Effects of Caregiving: Protocol for a Longitudinal Mixed Methods Observational Study JO - JMIR Res Protoc SP - e30975 VL - 11 IS - 1 KW - epilepsy KW - military personnel KW - veterans KW - caregiver KW - traumatic brain injury KW - quality of life KW - health status KW - longitudinal studies KW - ecologic momentary assessment KW - qualitative research N2 - Background: Veterans with posttraumatic epilepsy (PTE), particularly those with comorbidities associated with epilepsy or traumatic brain injury (TBI), have poorer health status and higher symptom burden than their peers without PTE. One area that has been particularly poorly studied is that of the role of caregivers in the health of veterans with PTE and the impact caring for someone with PTE has on the caregivers themselves. Objective: In this study, we aim to address the following: describe and compare the health and quality of life of veterans and caregivers of veterans with and without PTE; evaluate the change in available supports and unmet needs for services among caregivers of post-9/11 veterans with PTE over a 2-year period and to compare support and unmet needs with those without PTE; and identify veteran and caregiver characteristics associated with the 2-year health trajectories of caregivers and veterans with PTE compared with veterans without PTE. Methods: We conducted a prospective cohort study of the health and quality of life among 4 groups of veterans and their caregivers: veterans with PTE, nontraumatic epilepsy, TBI only, and neither epilepsy nor TBI. We will recruit participants from previous related studies and collect information about both the veterans and their primary informal caregivers on health, quality of life, unmet needs for care, PTE and TBI symptoms and treatment, relationship, and caregiver experience. Data sources will include existing data supplemented with primary data, such as survey data collected at baseline, intermittent brief reporting using ecological momentary assessment, and qualitative interviews. We will make both cross-sectional and longitudinal comparisons, using veteran-caregiver dyads, along with qualitative findings to better understand risk and promotive factors for quality of life and health among veterans and caregivers, as well as the bidirectional impact of caregivers and care recipients on one another. Results: This study was approved by the institutional review boards of the University of Utah and Salt Lake City Veterans Affairs and is under review by the Human Research Protection Office of the United States Army Medical Research and Development Command. The Service Member, Veteran, and Caregiver Community Stakeholders Group has been formed and the study questionnaire will be finalized once the panel reviews it. We anticipate the start of recruitment and primary data collection by January 2022. Conclusions: New national initiatives aim to incorporate the caregiver into the veteran?s treatment plan; however, we know little about the impact of caregiving?both positive and negative?on the caregivers themselves and on the veterans for whom they provide care. We will identify specific needs in this understudied population, which will inform clinicians, patients, families, and policy makers about the specific impact and needs to equip caregivers in caring for veterans at home. International Registered Report Identifier (IRRID): PRR1-10.2196/30975 UR - https://www.researchprotocols.org/2022/1/e30975 UR - http://dx.doi.org/10.2196/30975 UR - http://www.ncbi.nlm.nih.gov/pubmed/34989689 ID - info:doi/10.2196/30975 ER - TY - JOUR AU - Anderson, Smith Martha AU - Bankole, Azziza AU - Homdee, Nutta AU - Mitchell, A. Brook AU - Byfield, E. Grace AU - Lach, John PY - 2021/12/6 TI - Dementia Caregiver Experiences and Recommendations for Using the Behavioral and Environmental Sensing and Intervention System at Home: Usability and Acceptability Study JO - JMIR Aging SP - e30353 VL - 4 IS - 4 KW - dementia KW - agitation KW - sensors KW - smart health KW - wearable technology KW - just-in-time notifications KW - caregiver KW - dyad KW - home-based KW - qualitative N2 - Background: Caregiver burden associated with dementia-related agitation is one of the most common reasons for a community-dwelling person living with dementia to transition to a care facility. The Behavioral and Environmental Sensing and Intervention (BESI) for the Dementia Caregiver Empowerment system uses sensing technology, smartwatches, tablets, and data analytics to detect and predict agitation in persons living with dementia and to provide just-in-time notifications and dyad-specific intervention recommendations to caregivers. The BESI system has shown that there is a valid relationship between dementia-related agitation and environmental factors and that caregivers prefer a home-based monitoring system. Objective: The aim of this study is to obtain input from caregivers of persons living with dementia on the value, usability, and acceptability of the BESI system in the home setting and obtain their insights and recommendations for the next stage of system development. Methods: A descriptive qualitative design with thematic analysis was used to analyze 10 semistructured interviews with caregivers. The interviews comprised 16 questions, with an 80% (128/160) response rate. Results: Postdeployment caregiver feedback about the BESI system and the overall experience were generally positive. Caregivers acknowledged the acceptability of the system by noting the ease of use and saw the system as a fit for them. Functionality issues such as timeliness in agitation notification and simplicity in the selection of agitation descriptors on the tablet interface were identified, and caregivers indicated a desire for more word options to describe agitation behaviors. Agitation intervention suggestions were well received by the caregivers, and the resulting decrease in the number and severity of agitation events helped confirm that the BESI system has good value and acceptability. Thematic analysis suggested several subjective experiences and yielded the themes of usefulness and helpfulness. Conclusions: This study determined preferences for assessing caregiver strain and burden, explored caregiver acceptance of the technology system (in-home sensors, actigraph or smart watch technology, and tablet devices), discerned caregiver insights on the burden and stress of caring for persons living with dementia experiencing agitation in dementia, and solicited caregiver input and recommendations for system changes. The themes of usefulness and helpfulness support the use of caregiver knowledge and experience to inform further development of the technology. UR - https://aging.jmir.org/2021/4/e30353 UR - http://dx.doi.org/10.2196/30353 UR - http://www.ncbi.nlm.nih.gov/pubmed/34874886 ID - info:doi/10.2196/30353 ER - TY - JOUR AU - Goodridge, Donna AU - Reis, Nathan AU - Neiser, Jenna AU - Haubrich, Tim AU - Westberg, Bev AU - Erickson-Lumb, Laura AU - Storozinski, Jo AU - Gonzales, Cesar AU - Michael, Joanne AU - Cammer, Allison AU - Osgood, Nathaniel PY - 2021/11/26 TI - An App-Based Mindfulness-Based Self-compassion Program to Support Caregivers of People With Dementia: Participatory Feasibility Study JO - JMIR Aging SP - e28652 VL - 4 IS - 4 KW - virtual support programs KW - caregivers KW - dementia KW - mindfulness KW - self-compassion KW - mobile health KW - mobile applications KW - elderly KW - older adults KW - usability KW - feasibility KW - smartphone app KW - mobile phone N2 - Background: The number of persons with dementia is steadily growing, as is the number of individuals supporting persons with dementia. Primary caregivers of persons with dementia are most often family members or spouses of the persons with dementia, and they are more likely to experience increased stress and other negative effects than individuals who are not primary caregivers. Although in-person support groups have been shown to help buffer the negative impacts of caregiving, some caregivers live in isolated or rural communities and are unable to make the burdensome commitment of traveling to cities. Using an interdisciplinary approach, we developed a mobile smartphone support app designed for primary caregivers of persons with dementia, with the goal of reducing caregiver burden and easing stress. The app features a 12-week intervention, largely rooted in mindfulness-based self-compassion (MBSC), because MBSC has been linked to minimizing stress, depression, and anxiety. Objective: The primary objectives of our program are twofold: to explore the feasibility of a 12-week mobile support program and to conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers before and after the program. Methods: Our feasibility study used a 2-phase participatory pretest and posttest design, focusing on acceptability, demand, practicality, implementation, and efficacy. At phase I, we recruited 57 primary caregivers of persons with dementia (mean age 76.3, SD 12.9 years), comprising spouses (21/57, 37%), children (21/57, 37%), and friends or relatives (15/57, 26%) of persons with dementia, of whom 29 (51%) completed all measures at both pre- and postprogram. The content of the program featured a series of MBSC podcasts. Our primary outcome measure was caregiver burden, with secondary outcome measures including coping styles and emotional well-being. Daily ecological momentary assessments enabled us to ask participants, ?How are you feeling today?? Phase II of our study involved semistructured follow-up interviews with most participants (n=21) who completed phase I. Results: Our findings suggest that our app or program meets the feasibility criteria examined. Notably, participants generally accepted the program and believed it could be a useful resource. Emotional well-being increased significantly (P=.04), and emotion-based coping significantly decreased (P=.01). Participants generally considered the app or program to be a helpful resource. Conclusions: Although there were no significant changes in caregiver burden, we were encouraged by the increased emotional well-being of our participants following the completion of our program. We also conclude that our app or program demonstrated feasibility (ie, acceptability, practicality, implementation, and efficacy) and can provide a much-needed resource for primary caregivers of persons with dementia. In the subsequent version of the program, we will respond to participant feedback by incorporating web-based weekly sessions and incorporating an outcome measure of self-compassion. UR - https://aging.jmir.org/2021/4/e28652 UR - http://dx.doi.org/10.2196/28652 UR - http://www.ncbi.nlm.nih.gov/pubmed/34842530 ID - info:doi/10.2196/28652 ER - TY - JOUR AU - Lasrado, Reena AU - Bielsten, Therese AU - Hann, Mark AU - Schumm, James AU - Reilly, Theresa Siobhan AU - Davies, Linda AU - Swarbrick, Caroline AU - Dowlen, Robyn AU - Keady, John AU - Hellström, Ingrid PY - 2021/11/16 TI - Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study JO - JMIR Aging SP - e16824 VL - 4 IS - 4 KW - dementia guide KW - self-management for couples with dementia KW - dementia self-help KW - dementia app KW - dementia resource KW - feasibility study KW - nonrandomized study KW - dementia intervention N2 - Background: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. Objective: The aim of this study is to investigate the feasibility and acceptability of the DemPower app. Methods: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. Results: The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower?s utility varied with each couple?s lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. Conclusions: The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. Trial Registration: ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979 UR - https://aging.jmir.org/2021/4/e16824 UR - http://dx.doi.org/10.2196/16824 UR - http://www.ncbi.nlm.nih.gov/pubmed/34783666 ID - info:doi/10.2196/16824 ER - TY - JOUR AU - Hendrikx, Josephine Laura AU - Murphy, Dominic PY - 2021/10/12 TI - Supporting the Mental Health Needs of Military Partners Through the Together Webinar Program: Pilot Randomized Controlled Trial JO - JMIR Ment Health SP - e25622 VL - 8 IS - 10 KW - mental health support KW - online group-based support KW - military partners N2 - Background: Despite an increased risk of psychological difficulties, there remains a lack of evidence-based support for the mental health needs of military partners. Objective: This study aims to investigate whether the Together Webinar Programme (TTP-Webinar), a 6-week structured, remote access group intervention would reduce military partners? experience of common mental health difficulties and secondary trauma symptoms. Methods: A pilot randomized controlled trial was used to compare the TTP-Webinar intervention with a waitlist control. The sample was UK treatment-seeking veterans engaged in a mental health charity. A total of 196 military partners (1 male and 195 females; aged mean 42.28, SD 10.82 years) were randomly allocated to the intervention (n=97) or waitlist (n=99) condition. Outcome measures were self-reported measures of common mental health difficulties, secondary trauma symptoms, and overall quality of life rating. Results: Compared with the waitlist, military partners in the TTP-Webinar had reduced common mental health difficulties (P=.02) and secondary trauma symptoms (P=.001). However, there was no difference in quality-of-life ratings (P=.06). Conclusions: The results suggest that TTP-Webinar is an effective intervention to support the mental health difficulties of military partners. This study provides promising evidence that webinars may be an appropriate platform for providing group-based support. Trial Registration: ClinicalTrials.gov NCT05013398; https://clinicaltrials.gov/ct2/show/NCT05013398 UR - https://mental.jmir.org/2021/10/e25622 UR - http://dx.doi.org/10.2196/25622 UR - http://www.ncbi.nlm.nih.gov/pubmed/34636734 ID - info:doi/10.2196/25622 ER - TY - JOUR AU - Bastoni, Sofia AU - Wrede, Christian AU - da Silva, Cristina Marcia AU - Sanderman, Robbert AU - Gaggioli, Andrea AU - Braakman-Jansen, Annemarie AU - van Gemert-Pijnen, Lisette PY - 2021/10/8 TI - Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review JO - JMIR Aging SP - e30841 VL - 4 IS - 4 KW - eHealth KW - assistive technologies KW - dementia KW - informal care KW - home care KW - implementation N2 - Background: The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective: The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods: Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results: We identified technologies designed to be used ?by informal caregivers,? ?by people with dementia,? and ?with people with dementia.? Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions: Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care. UR - https://aging.jmir.org/2021/4/e30841 UR - http://dx.doi.org/10.2196/30841 UR - http://www.ncbi.nlm.nih.gov/pubmed/34623314 ID - info:doi/10.2196/30841 ER - TY - JOUR AU - Betz, E. Marian AU - Polzer, Evan AU - Nearing, Kathryn AU - Knoepke, E. Christopher AU - Johnson, L. Rachel AU - Meador, Lauren AU - Matlock, D. Daniel PY - 2021/9/22 TI - Feasibility and Acceptability of a Web-Based Caregiver Decision Aid (Safety in Dementia) for Firearm Access: Pilot Randomized Controlled Trial JO - JMIR Form Res SP - e30990 VL - 5 IS - 9 KW - dementia KW - cognitive impairment KW - firearm KW - decision aid KW - caregivers KW - safety KW - feasibility KW - pilot trial KW - Alzheimer disease KW - caregiver support N2 - Background: Firearms are common in the households of persons with Alzheimer disease and related dementias (ADRD). Safety in Dementia (SiD) is a free web-based decision aid that was developed to support ADRD caregivers in addressing firearm access. Objective: We aimed to evaluate the feasibility and acceptability of SiD among a web-based sample of ADRD caregivers. Methods: SiD was tested in 2 phases by using participants who were recruited from a web-based convenience sample (Amazon Mechanical Turk participants). In phase 1, caregivers were randomized to view either the intervention (SiD) or the control (Alzheimer?s Association materials), and the blinding of participants to the study arms was conducted. In phase 2, caregivers of individuals with ADRD and firearm access were recruited; all of these participants viewed the firearm section of SiD. In both phases, participants viewed SiD independently for as long as they wanted. Measures for evaluating decision-making and SiD acceptability were used, and these were assessed via a self-administered web-based questionnaire. Results: Participants were recruited for phases 1 (n=203) and 2 (n=54). Although it was feasible to collect the study outcome data in a web-based format, in phase 1, there were no significant differences between SiD and the control in terms of decision-making and self-efficacy. The majority (137/203, 67.5%) of phase 1 participants spent between 5 and 10 minutes reviewing the resources. In phase 2, 61% (33/54) of participants spent 5 to 10 minutes viewing the firearm section, and 31% (17/54) spent 10 to 20 minutes viewing this section. Usability and acceptability were high across the phases. Conclusions: SiD represents a new resource for promoting safety among people with dementia, and high acceptability was achieved in a pilot trial. In this sample, SiD performed similarly to Alzheimer?s Association materials in supporting decision-making and self-efficacy. UR - https://formative.jmir.org/2021/9/e30990 UR - http://dx.doi.org/10.2196/30990 UR - http://www.ncbi.nlm.nih.gov/pubmed/34550082 ID - info:doi/10.2196/30990 ER - TY - JOUR AU - Yerushalmi, Mor AU - Sixsmith, Andrew AU - Pollock Star, Ariel AU - King, B. David AU - O'Rourke, Norm PY - 2021/9/2 TI - Ecological Momentary Assessment of Bipolar Disorder Symptoms and Partner Affect: Longitudinal Pilot Study JO - JMIR Form Res SP - e30472 VL - 5 IS - 9 KW - bipolar disorder KW - couples KW - dyadic analyses KW - ecological momentary assessment KW - EMA KW - partner KW - relationships KW - mHealth KW - mobile apps KW - mental health KW - depression KW - BPD KW - mood N2 - Background: The World Health Organization ranks bipolar disorder (BD) as the 7th leading cause of disability. Although the effects on those with BD are well described, less is reported on the impact of BD on cohabiting partners or any interactions between the two; this requires in vivo data collection measured each day over several months. Objective: We set out to demonstrate the utility of ecological momentary assessment with BD couples measured using yoked smartphone apps. When randomly prompted over time, we assumed distinct patterns of association would emerge between BD symptoms (both depression and hypo/mania) and partner mood (positive and negative affect). Methods: For this pilot study, we recruited an international sample of young and older adults with BD and their cohabiting partners where available. Both participants and partners downloaded separate apps onto their respective smartphones. Within self-specified ?windows of general availability,? participants with BD were randomly prompted to briefly report symptoms of depression and hypo/mania (ie, BDSx), positive and negative mood (ie, POMS-15; partners), and any important events of the day (both). The partner app was yoked to the participant app so that the former was prompted roughly 30 minutes after the participant with BD or the next morning if outside the partner?s specified availability. Results: Four couples provided 312 matched BD symptom and partner mood responses over an average of 123 days (range 65-221 days). Both were GPS- and time-stamped (mean 3:11 hrs between questionnaires, SD 4:51 hrs). Total depression had a small but significant association with positive (r=?.14; P=.02) and negative partner affect (r=.15; P=.01]. Yet total hypo/mania appeared to have no association with positive partner affect (r=?.01; P=.87); instead, negative partner affect was significantly correlated with total hypo/mania (r=.26; P=.01). However, when we look specifically at BD factors, we see that negative partner affect is associated only with affrontive symptoms of hypo/mania (r=.38; P=.01); elation or loss of insight appears unrelated to either positive (r=.10; P=.09) or negative partner affect (r=.02; P=.71). Yet affrontive symptoms of hypo/mania were significantly correlated with negative affect, but only when couples were together (r=.41; P=.01), not when apart (r=.22; P=.12). That is, these angry interpersonal symptoms of hypo/mania appear to be experienced most negatively by spouses when couples are together. Conclusions: These initial findings demonstrate the utility of in vivo ambulatory data collection in longitudinal mental health research. Preliminary analyses suggest different BD symptoms are associated with negative and positive partner mood. These negative effects appear greater for hypo/mania than depressive symptoms, but proximity to the person with BD is important. UR - https://formative.jmir.org/2021/9/e30472 UR - http://dx.doi.org/10.2196/30472 UR - http://www.ncbi.nlm.nih.gov/pubmed/34473069 ID - info:doi/10.2196/30472 ER - TY - JOUR AU - Liverpool, Shaun AU - Edbrooke-Childs, Julian PY - 2021/6/15 TI - A Caregiver Digital Intervention to Support Shared Decision Making in Child and Adolescent Mental Health Services: Development Process and Stakeholder Involvement Analysis JO - JMIR Form Res SP - e24896 VL - 5 IS - 6 KW - digital health intervention KW - caregivers KW - parents KW - child mental health N2 - Background: Parents and caregivers are generally recognized by literature and the law as key to child and adolescent mental health decisions. Digital interventions are increasingly being used to support care and treatment in child and adolescent mental health services (CAMHS). However, evidence of the design and development process is generally not made available. Objective: In light of calls for more transparency, this paper aims to describe the development of an evidence-based, theoretically informed digital decision support intervention for parents and caregivers of young people accessing CAMHS. Methods: The intervention was developed in line with the UK Medical Research Council framework for developing complex interventions. The process incorporated the steps for developing patient decision aids, as follows: assessing need, assessing feasibility; defining objectives; identifying the framework of decision support; and selecting the methods, designs, and dissemination approach. We synthesized theory, research, international guidelines, and input from relevant stakeholders using an iterative design approach. Results: The development steps resulted in Power Up for Parents, a decision support intervention, with five key features (ie, decisions, goals, journey, support, and resources). The intervention aims to encourage discussion, allow parents to ask questions during sessions or seek further information between sessions, and allow service providers to tailor the shared decision-making process to accommodate the needs of the parent and child. Conclusions: We confirmed that it is possible to use input from end users?integrated with theory and evidence?to create digital interventions to be used in CAMHS. Key lessons with implications for practice, policy, and implementation science, along with preliminary findings, are presented. International Registered Report Identifier (IRRID): RR2-10.2196/14571 UR - https://formative.jmir.org/2021/6/e24896 UR - http://dx.doi.org/10.2196/24896 UR - http://www.ncbi.nlm.nih.gov/pubmed/34128821 ID - info:doi/10.2196/24896 ER - TY - JOUR AU - Kim, Gyungha AU - Jeon, Hwawoo AU - Park, Kee Sung AU - Choi, Suk Yong AU - Lim, Yoonseob PY - 2021/6/8 TI - A Care Knowledge Management System Based on an Ontological Model of Caring for People With Dementia: Knowledge Representation and Development Study JO - J Med Internet Res SP - e25968 VL - 23 IS - 6 KW - caregiver KW - caregiver for person with dementia KW - knowledge model KW - ontology KW - knowledge management KW - semantic reasoning N2 - Background: Caregivers of people with dementia find it extremely difficult to choose the best care method because of complex environments and the variable symptoms of dementia. To alleviate this care burden, interventions have been proposed that use computer- or web-based applications. For example, an automatic diagnosis of the condition can improve the well-being of both the person with dementia and the caregiver. Other interventions support the individual with dementia in living independently. Objective: The aim of this study was to develop an ontology-based care knowledge management system for people with dementia that will provide caregivers with a care guide suited to the environment and to the individual patient?s symptoms. This should also enable knowledge sharing among caregivers. Methods: To build the care knowledge model, we reviewed existing ontologies that contain concepts and knowledge descriptions relating to the care of those with dementia, and we considered dementia care manuals. The basic concepts of the care ontology were confirmed by experts in Korea. To infer the different care methods required for the individual dementia patient, the reasoning rules as defined in Semantic Web Rule Languages and Prolog were utilized. The accuracy of the care knowledge in the ontological model and the usability of the proposed system were evaluated by using the Pellet reasoner and OntOlogy Pitfall Scanner!, and a survey and interviews were conducted with caregivers working in care centers in Korea. Results: The care knowledge model contains six top-level concepts: care knowledge, task, assessment, person, environment, and medical knowledge. Based on this ontological model of dementia care, caregivers at a dementia care facility in Korea were able to access the care knowledge easily through a graphical user interface. The evaluation by the care experts showed that the system contained accurate care knowledge and a level of assessment comparable to normal assessment tools. Conclusions: In this study, we developed a care knowledge system that can provide caregivers with care guides suited to individuals with dementia. We anticipate that the system could reduce the workload of caregivers. UR - https://www.jmir.org/2021/6/e25968 UR - http://dx.doi.org/10.2196/25968 UR - http://www.ncbi.nlm.nih.gov/pubmed/34100762 ID - info:doi/10.2196/25968 ER - TY - JOUR AU - Ruggiano, Nicole AU - Brown, L. Ellen AU - Roberts, Lisa AU - Framil Suarez, Victoria C. AU - Luo, Yan AU - Hao, Zhichao AU - Hristidis, Vagelis PY - 2021/6/3 TI - Chatbots to Support People With Dementia and Their Caregivers: Systematic Review of Functions and Quality JO - J Med Internet Res SP - e25006 VL - 23 IS - 6 KW - dementia KW - caregivers KW - chatbots KW - conversation agents KW - mobile apps KW - mobile phone N2 - Background: Over the past decade, there has been an increase in the use of information technologies to educate and support people with dementia and their family caregivers. At the same time, chatbot technologies have become increasingly popular for use by the public and have been identified as having benefits for health care delivery. However, little is known about how chatbot technologies may benefit people with dementia and their caregivers. Objective: This study aims to identify the types of current commercially available chatbots that are designed for use by people with dementia and their caregivers and to assess their quality in terms of features and content. Methods: Chatbots were identified through a systematic search on Google Play Store, Apple App Store, Alexa Skills, and the internet. An evidence-based assessment tool was used to evaluate the features and content of the identified apps. The assessment was conducted through interrater agreement among 4 separate reviewers. Results: Of the 505 initial chatbots identified, 6 were included in the review. The chatbots assessed varied significantly in terms of content and scope. Although the chatbots were generally found to be easy to use, some limitations were noted regarding their performance and programmed content for dialog. Conclusions: Although chatbot technologies are well established and commonly used by the public, their development for people with dementia and their caregivers is in its infancy. Given the successful use of chatbots in other health care settings and for other applications, there are opportunities to integrate this technology into dementia care. However, more evidence-based chatbots that have undergone end user evaluation are needed to evaluate their potential to adequately educate and support these populations. UR - https://www.jmir.org/2021/6/e25006 UR - http://dx.doi.org/10.2196/25006 UR - http://www.ncbi.nlm.nih.gov/pubmed/34081019 ID - info:doi/10.2196/25006 ER - TY - JOUR AU - Christie, Liane Hannah AU - Boots, Maria Lizzy Mitzy AU - Hermans, Ivo AU - Govers, Mark AU - Tange, Johannes Huibert AU - Verhey, Josef Frans Rochus AU - de Vugt, Majolein PY - 2021/6/3 TI - Business Models of eHealth Interventions to Support Informal Caregivers of People With Dementia in the Netherlands: Analysis of Case Studies JO - JMIR Aging SP - e24724 VL - 4 IS - 2 KW - eHealth KW - dementia KW - caregiving KW - implementation KW - business modeling N2 - Background: In academic research contexts, eHealth interventions for caregivers of people with dementia have shown ample evidence of effectiveness. However, they are rarely implemented in practice, and much can be learned from their counterparts (commercial, governmental, or other origins) that are already being used in practice. Objective: This study aims to examine a sample of case studies of eHealth interventions to support informal caregivers of people with dementia that are currently used in the Netherlands; to investigate what strategies are used to ensure the desirability, feasibility, viability, and sustainability of the interventions; and to apply the lessons learned from this practical, commercial implementation perspective to academically developed eHealth interventions for caregivers of people with dementia. Methods: In step 1, experts (N=483) in the fields of dementia and eHealth were contacted and asked to recommend interventions that met the following criteria: delivered via the internet; suitable for informal caregivers of people with dementia; accessible in the Netherlands, either in Dutch or in English; and used in practice. The contacted experts were academics working on dementia and psychosocial innovations, industry professionals from eHealth software companies, clinicians, patient organizations, and people with dementia and their caregivers. In step 2, contact persons from the suggested eHealth interventions participated in a semistructured telephone interview. The results were analyzed using a multiple case study methodology. Results: In total, the response rate was 7.5% (36/483), and 21 eHealth interventions for caregivers of people with dementia were recommended. Furthermore, 43% (9/21) of the interventions met all 4 criteria and were included in the sample for the case study analysis. Of these 9 interventions, 4 were found to have developed sustainable business models and 5 were implemented in a more exploratory manner and relied on research grants to varying extents, although some had also developed preliminary business models. Conclusions: These findings suggest that the desirability, feasibility, and viability of eHealth interventions for caregivers of people with dementia are linked to their integration into larger structures, their ownership and support of content internally, their development of information and communication technology services externally, and their offer of fixed, low pricing. The origin of the case studies was also important, as eHealth interventions that had originated in an academic research context less reliably found their way to sustainable implementation. In addition, careful selection of digital transformation strategies, more intersectoral cooperation, and more funding for implementation and business modeling research are recommended to help future developers bring eHealth interventions for caregivers of people with dementia into practice. UR - https://aging.jmir.org/2021/2/e24724 UR - http://dx.doi.org/10.2196/24724 UR - http://www.ncbi.nlm.nih.gov/pubmed/34081009 ID - info:doi/10.2196/24724 ER - TY - JOUR AU - Goodman-Casanova, Marian Jessica AU - Dura-Perez, Elena AU - Guerrero-Pertiñez, Gloria AU - Barnestein-Fonseca, Pilar AU - Guzman-Parra, Jose AU - Vega-Nuñez, Amanda AU - Varela-Moreno, Esperanza AU - Cuesta-Vargas, Antonio AU - Mayoral-Cleries, Fermin PY - 2021/5/18 TI - Cognitive Outcomes During COVID-19 Confinement Among Older People and Their Caregivers Using Technologies for Dementia: Protocol for an Observational Cohort Study JO - JMIR Res Protoc SP - e26431 VL - 10 IS - 5 KW - caregiver KW - cognition KW - cognitive impairment KW - cohort KW - COVID-19 KW - dementia KW - older people KW - informal caregivers KW - information and communications technologies KW - isolation KW - older adults KW - outcome KW - quality of life KW - social isolation KW - stress KW - technologies N2 - Background: The COVID-19 pandemic has led to worldwide implementation of unprecedented restrictions to control its rapid spread and mitigate its impact. The Spanish government has enforced social distancing, quarantine, and home confinement measures. Such restrictions on activities of daily life and separation from loved ones may lead to social isolation and loneliness with health-related consequences among community-dwelling older adults with mild cognitive impairment or mild dementia and their caregivers. Additionally, inadequate access to health care and social support services may aggravate chronic conditions. Home-based technological interventions have emerged for combating social isolation and loneliness, while simultaneously preventing the risk of virus exposure. Objective: The aim of this cohort study is to explore, analyze, and determine the impact of social isolation on (1) cognition, quality of life, mood, technophilia, and perceived stress among community-dwelling older adults with mild cognitive impairment or mild dementia and on the caregiver burden; (2) access to and utilization of health and social care services; and (3) cognitive, social, and entertainment-related uses of information and communication technologies. Methods: This study will be conducted in Málaga (Andalucía, Spain). In total 200 dyads, consisting of a person with mild cognitive impairment or mild dementia and his/her informal caregiver, will be contacted by telephone. Potential respondents will be participants of the following clinical trials: support, monitoring, and reminder technology for mild dementia (n=100) and television-based assistive integrated service to support European adults living with mild dementia or mild cognitive impairment (n=100). Results: As of May 2021, a total of 153 participants have been enrolled and assessed during COVID-19 confinement, of whom 67 have been assessed at 6 months of enrollment. Changes in the mean values of the variables will be analyzed relative to baseline findings of previous studies with those during and after confinement, using repeated-measures analysis of variance or the nonparametric Friedman test, as appropriate. The performance of multivariate analysis of covariance (ANCOVA) to introduce potential covariates will also be considered. Values of 95% CI will be used. Conclusions: If our hypothesis is accepted, these findings will demonstrate the negative impact of social isolation owing to COVID-19 confinement on cognition, quality of life, mood, and perceived stress among community-dwelling older adults with mild cognitive impairment and mild dementia, the impact on technophilia, caregiver burden, the access to and utilization of health and social care services, and the cognitive, social, and entertainment-related use of information and communication technologies during and after COVID-19 confinement. Trial Registration: ClinicalTrials.gov NCT04385797; https://clinicaltrials.gov/ct2/show/NCT04385797 International Registered Report Identifier (IRRID): DERR1-10.2196/26431 UR - https://www.researchprotocols.org/2021/5/e26431 UR - http://dx.doi.org/10.2196/26431 UR - http://www.ncbi.nlm.nih.gov/pubmed/33909588 ID - info:doi/10.2196/26431 ER - TY - JOUR AU - Laine, Anna AU - Anttila, Minna AU - Hirvonen, Heli AU - Välimäki, Maritta PY - 2021/4/23 TI - Feasibility of a Web-Based Psychoeducation Course and Experiences of Caregivers Living With a Person With Schizophrenia Spectrum Disorder: Mixed Methods Study JO - J Med Internet Res SP - e25480 VL - 23 IS - 4 KW - caregiver KW - informal caregiver KW - internet KW - mental health KW - psychoeducation KW - schizophrenia KW - mobile phone N2 - Background: Schizophrenia is a severe mental illness that burdens both patients and caregivers. Objective: The aim of this study is to examine the feasibility of a web-based psychoeducation course targeted at caregivers of persons with schizophrenia spectrum disorders (SSDs) and to describe their experiences of living with a person with SSD based on the material caregivers produced during the web-based course. Methods: A convergent, parallel, mixed methods study design was used. First, caregivers? engagement in the course was evaluated quantitatively. Second, the overview of the course feedback was evaluated using quantitative and qualitative methods. Third, the experiences of being a caregiver to a person with SSD were analyzed qualitatively with the thematic analysis of the writings caregivers produced during the web-based course. Results: A total of 30 caregivers participated in the study and a web-based psychoeducation course. Less than two-thirds (18/30, 60%) completed the course. Content was most often logged for the first module, Orientation (3465 log-ins), and the lowest number of log-ins was recorded for the Daily life module (1061 log-ins). Feedback on the course varied; over half (10/17, 59%) of the caregivers considered the content to be very good or good, about half (9/17, 53%) considered the website layout to be good, only 6% (1/17) felt that the usability of the website was poor, and no one felt that it was very poor. From the reported experiences of being a caregiver to a person with SSD, 3 themes were formed: the caregiver?s own well-being, relationship with the person with SSD, and experience of health care services. Conclusions: The web-based psychoeducation course for caregivers living with a person with SSD seems to be especially suitable for those who have little experience as a caregiver. In the future, more planning and the consideration of aspects related to the needs of specific target groups, course content, practical arrangements, and scheduling should be taken into account. In addition, although caregivers can improve their own well-being in different ways, they need regular support and cooperation from health care professionals. UR - https://www.jmir.org/2021/4/e25480 UR - http://dx.doi.org/10.2196/25480 UR - http://www.ncbi.nlm.nih.gov/pubmed/33890862 ID - info:doi/10.2196/25480 ER - TY - JOUR AU - Wrede, Christian AU - Braakman-Jansen, Annemarie AU - van Gemert-Pijnen, Lisette PY - 2021/4/12 TI - Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers JO - JMIR Aging SP - e26875 VL - 4 IS - 2 KW - in-home monitoring KW - ambient assisted living KW - assistive technologies KW - dementia KW - home care KW - informal care KW - aging in place N2 - Background: Due to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia. Objective: The objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia. Methods: A combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn. Results: Formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context. Conclusions: Despite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care. UR - https://aging.jmir.org/2021/2/e26875 UR - http://dx.doi.org/10.2196/26875 UR - http://www.ncbi.nlm.nih.gov/pubmed/33843596 ID - info:doi/10.2196/26875 ER - TY - JOUR AU - Rai, Kaur Harleen AU - Schneider, Justine AU - Orrell, Martin PY - 2021/4/8 TI - An Individual Cognitive Stimulation Therapy App for People With Dementia and Their Carers: Protocol for a Feasibility Randomized Controlled Trial JO - JMIR Res Protoc SP - e24628 VL - 10 IS - 4 KW - dementia KW - cognitive stimulation therapy KW - touchscreen technology KW - feasibility trial KW - quality of life KW - mHealth KW - apps N2 - Background: There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer. The iCST app has also shown to improve the quality of the carer?s life. Objective: The aim of this study is to evaluate the usability of the iCST app intervention and the feasibility of conducting a full-scale randomized controlled trial (RCT) to assess the clinical effectiveness of the iCST app intervention compared to that of treatment-as-usual for people with mild-to-moderate dementia. Methods: We aim to recruit 60 people with mild-to-moderate dementia and their informal carers as dyads in a multi-center feasibility RCT with a treatment-as-usual control group. Both parties must be able to provide informed consent and participate in the intervention. Dyads will complete a baseline assessment that will include cognition and quality of life measures and they will subsequently be randomized (1:1) to the iCST app intervention in addition to usual care or to usual care only. All participants will be followed up at 5 weeks and at 11 weeks after the baseline assessments. A range of feasibility outcomes will be assessed, including recruitment and retention rates, intervention fidelity and usability, and acceptability of the outcome measures. A sample of the experimental group will be invited to a semistructured posttrial interview to further examine the experience of using the iCST app. Results: This study received funding in May 2015 and obtained ethical approval in March 2018. Data collection began in November 2018 and was completed in March 2020 with a total of 61 dyads recruited. Data analyses are in progress and the final results are expected to be available in the spring of 2021. Conclusions: This study will investigate whether it is feasible to conduct a full-scale RCT to evaluate the clinical effectiveness of the iCST app in comparison to that of usual care alone. In addition, this study will examine the usability of the iCST app. The data will provide information on potential modifications to be made to the intervention, study design, and study process. Trial Registration: ClinicalTrials.gov NCT03282877; https://clinicaltrials.gov/ct2/show/NCT03282877 International Registered Report Identifier (IRRID): DERR1-10.2196/24628 UR - https://www.researchprotocols.org/2021/4/e24628 UR - http://dx.doi.org/10.2196/24628 UR - http://www.ncbi.nlm.nih.gov/pubmed/33830058 ID - info:doi/10.2196/24628 ER - TY - JOUR AU - Kajiwara, Kohei AU - Kako, Jun AU - Noto, Hiroko AU - Oosono, Yasufumi AU - Kobayashi, Masamitsu PY - 2021/2/16 TI - The Potential for the Internet and Telehealth in Caregiver Support. Comment on ?Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention? JO - J Med Internet Res SP - e14953 VL - 23 IS - 2 KW - dementia KW - caregiver KW - technology UR - https://www.jmir.org/2021/2/e14953 UR - http://dx.doi.org/10.2196/14953 UR - http://www.ncbi.nlm.nih.gov/pubmed/33591281 ID - info:doi/10.2196/14953 ER - TY - JOUR AU - Christie, Liane Hannah AU - Boots, Maria Lizzy Mitzy AU - Tange, Johannes Huibert AU - Verhey, Josef Frans Rochus AU - de Vugt, Elizabeth Marjolein PY - 2021/2/5 TI - Implementations of Evidence-Based eHealth Interventions for Caregivers of People With Dementia in Municipality Contexts (Myinlife and Partner in Balance): Evaluation Study JO - JMIR Aging SP - e21629 VL - 4 IS - 1 KW - eHealth KW - mHealth KW - implementation science KW - dementia KW - caregiving KW - municipality N2 - Background: Very few evidence-based eHealth interventions for caregivers of people with dementia are implemented into practice. Municipalities are one promising context in which to implement these interventions due to their available policy and innovation incentives regarding (dementia) caregiving and prevention. In this study, two evidence-based eHealth interventions for caregivers of people with dementia (Partner in Balance and Myinlife) were implemented in 8 municipalities in the Euregion Meuse-Rhine. Partner in Balance is a blended care, 8-week, self-management intervention intervention designed to aid caregivers of people with dementia in adapting to their new roles that is delivered through coaches in participating health care organizations who are trained to use it to offer online support to their clients. Myinlife is an eHealth/mHealth intervention integrated into the Dutch Alzheimer?s Association website and available from the App Store or Google Play, designed to help caregivers of people with dementia use their social network to better organize care and share positive (caregiving) experiences. Objective: This study?s objectives were to evaluate the success of the implementation of Myinlife and Partner in Balance and investigate determinants of their successful implementation in the municipality context. Methods: This study collected eHealth use data, Partner in Balance coach evaluation questionnaires, and information on implementation determinants. This was done by conducting interviews with the municipality officials based on the measurement instrument for determinants of implementation (MIDI). These data from multiple sources and perspectives were integrated and analyzed to form a total picture of the determinants (barriers and facilitators to implementation in the municipality context). Results: The municipality implementation of Partner in Balance and Myinlife showed varying levels of success. In the end, 3 municipalities planned to continue the implementation of Partner in Balance, while none planned to continue the implementation of Myinlife. The 2 Partner in Balance municipalities that did not consider the implementation to be successful viewed the implementation as an external project. For Myinlife, it was clear that more face-to-face contact was needed to engage the implementing municipality and target groups. Successful implementations were linked to implementer self-efficacy and sense of ownership, which seemed to be absent in unsuccessful implementations. Conclusions: The experiences of implementing these interventions suggested that this implementation context was feasible regarding the required budget and infrastructure. The need to foster sense of ownership and self-efficacy in implementers will be integrated into future implementation protocols as part of standard implementation materials for municipalities and organizations implementing Myinlife and Partner in Balance. UR - http://aging.jmir.org/2021/1/e21629/ UR - http://dx.doi.org/10.2196/21629 UR - http://www.ncbi.nlm.nih.gov/pubmed/33544085 ID - info:doi/10.2196/21629 ER - TY - JOUR AU - May, G. Suepattra AU - Huber, Caroline AU - Roach, Meaghan AU - Shafrin, Jason AU - Aubry, Wade AU - Lakdawalla, Darius AU - Kane, M. John AU - Forma, Felicia PY - 2021/2/3 TI - Adoption of Digital Health Technologies in the Practice of Behavioral Health: Qualitative Case Study of Glucose Monitoring Technology JO - J Med Internet Res SP - e18119 VL - 23 IS - 2 KW - digital technology KW - chronic disease KW - blood glucose self-monitoring KW - diabetes self-management KW - real-time systems KW - mental illness KW - mobile phone N2 - Background: Evaluation of patients with serious mental illness (SMI) relies largely on patient or caregiver self-reported symptoms. New digital technologies are being developed to better quantify the longitudinal symptomology of patients with SMI and facilitate disease management. However, as these new technologies become more widely available, psychiatrists may be uncertain about how to integrate them into daily practice. To better understand how digital tools might be integrated into the treatment of patients with SMI, this study examines a case study of a successful technology adoption by physicians: endocrinologists? adoption of digital glucometers. Objective: This study aims to understand the key facilitators of and barriers to clinician and patient adoption of digital glucose monitoring technologies to identify lessons that may be applicable across other chronic diseases, including SMIs. Methods: We conducted focus groups with practicing endocrinologists from 2 large metropolitan areas using a semistructured discussion guide designed to elicit perspectives of and experiences with technology adoption. The thematic analysis identified barriers to and facilitators of integrating digital glucometers into clinical practice. Participants also provided recommendations for integrating digital health technologies into clinical practice more broadly. Results: A total of 10 endocrinologists were enrolled: 60% (6/10) male; a mean of 18.4 years in practice (SD 5.6); and 80% (8/10) working in a group practice setting. Participants stated that digital glucometers represented a significant change in the treatment paradigm for diabetes care and facilitated more effective care delivery and patient engagement. Barriers to the adoption of digital glucometers included lack of coverage, provider reimbursement, and data management support, as well as patient heterogeneity. Participant recommendations to increase the use of digital health technologies included expanding reimbursement for clinician time, streamlining data management processes, and customizing the technologies to patient needs. Conclusions: Digital glucose monitoring technologies have facilitated more effective, individualized care delivery and have improved patient engagement and health outcomes. However, key challenges faced by the endocrinologists included lack of reimbursement for clinician time and nonstandardized data management across devices. Key recommendations that may be relevant for other diseases include improved data analytics to quickly and accurately synthesize data for patient care management, streamlined software, and standardized metrics. UR - https://www.jmir.org/2021/2/e18119 UR - http://dx.doi.org/10.2196/18119 UR - http://www.ncbi.nlm.nih.gov/pubmed/33533725 ID - info:doi/10.2196/18119 ER - TY - JOUR AU - Stanyon, Miriam AU - Streater, Amy AU - Coleston-Shields, Maria Donna AU - Yates, Jennifer AU - Challis, David AU - Dening, Tom AU - Hoe, Juanita AU - Lloyd-Evans, Brynmor AU - Mitchell, Shirley AU - Moniz-Cook, Esme AU - Poland, Fiona AU - Prothero, David AU - Orrell, Martin PY - 2021/1/27 TI - Development of an Evidence-Based Best Practice Model for Teams Managing Crisis in Dementia: Protocol for a Qualitative Study JO - JMIR Res Protoc SP - e14781 VL - 10 IS - 1 KW - dementia KW - caregivers KW - crisis KW - mental health KW - home management N2 - Background: Teams working in the community to manage crisis in dementia currently exist, but with widely varying models of practice, it is difficult to determine the effectiveness of such teams. Objective: The aim of this study is to develop a ?best practice model? for dementia services managing crisis, as well as a set of resources to help teams implement this model to measure and improve practice delivery. These will be the best practice tool and toolkit to be utilized by teams to improve the effectiveness of crisis teams working with older people with dementia and their caregivers. This paper describes the protocol for a prospective study using qualitative methods to establish an understanding of the current practice to develop a ?best practice model.? Methods: Participants (people with dementia, caregivers, staff members, and stakeholders) from a variety of geographical areas, with a broad experience of crisis and noncrisis work, will be purposively selected to participate in qualitative approaches including interviews, focus groups, a consensus workshop, and development and field testing of both the best practice tool and toolkit. Results: Data were collected between October 2016 and August 2018. Thematic analysis will be utilized to establish the current working of teams managing crisis in dementia in order to draw together elements of the best practice. Conclusions: This is the first study to systematically explore the requirements needed to fulfill effective and appropriate home management for people with dementia and their caregivers at the time of mental health crisis, as delivered by teams managing crisis in dementia. This systematic approach to development will support greater acceptability and validity of the best practice tool and toolkit and lay the foundation for a large scale trial with teams managing crisis in dementia across England to investigate the effects on practice and impact on service provision, as well as the associated experiences of people with dementia and their caregivers. International Registered Report Identifier (IRRID): RR1-10.2196/14781 UR - http://www.researchprotocols.org/2021/1/e14781/ UR - http://dx.doi.org/10.2196/14781 UR - http://www.ncbi.nlm.nih.gov/pubmed/33502333 ID - info:doi/10.2196/14781 ER - TY - JOUR AU - Ferré-Grau, Carme AU - Raigal-Aran, Laia AU - Lorca-Cabrera, Jael AU - Lluch-Canut, Teresa AU - Ferré-Bergadà, Maria AU - Lleixá-Fortuño, Mar AU - Puig-Llobet, Montserrat AU - Miguel-Ruiz, Dolores Maria AU - Albacar-Riobóo, Núria PY - 2021/1/22 TI - A Mobile App?Based Intervention Program for Nonprofessional Caregivers to Promote Positive Mental Health: Randomized Controlled Trial JO - JMIR Mhealth Uhealth SP - e21708 VL - 9 IS - 1 KW - clinical trial KW - caregiver KW - mobile phone app KW - intervention program KW - positive mental health KW - mobile health KW - health promotion KW - randomized controlled trial KW - nursing KW - caregiving KW - technology N2 - Background: While nonprofessional caregivers often experience a sense of fulfillment when they provide care, there is also a significant risk of emotional and physical burnout. Consequently, this can negatively affect both the caregiver and the person being cared for. Intervention programs can help empower nonprofessional caregivers of people with chronic diseases and develop solutions to decrease the physical and psychological consequences resulting from caregiving. However, most clinically tested intervention programs for nonprofessional caregivers require face-to-face training, and many caregivers encounter obstacles that hinder their participation in such programs. Consequently, it is necessary to design internet-based intervention programs for nonprofessional caregivers that address their needs and test the efficacy of the programs. Objective: The aim of this study was to evaluate the effectiveness of a smartphone app?based intervention program to increase positive mental health for nonprofessional caregivers. Methods: This study was a randomized controlled trial of 3 months? duration. A total of 152 caregivers over 18 years of age with a minimum of 4 months? experience as nonprofessional caregivers were recruited from primary health care institutions. Nonprofessional caregivers were randomized into two groups. In the intervention group, each caregiver installed a smartphone app and used it for 28 days. This app offered them daily activities that were based on 10 recommendations to promote positive mental health. The level of positive mental health, measured using the Positive Mental Health Questionnaire (PMHQ), and caregiver burden, measured using the 7-item short-form version of the Zarit Caregiver Burden Interview (ZBI-7), were the primary outcomes. Users? satisfaction was also measured. Results: In all, 113 caregivers completed the study. After the first month of the intervention, only one factor of the PMHQ, F1?Personal satisfaction, showed a significant difference between the groups, but it was not clinically relevant (0.96; P=.03). However, the intervention group obtained a higher mean change for the overall PMHQ score (mean change between groups: 1.40; P=.24). The results after the third month of the intervention showed an increment of PMHQ scores. The mean difference of change in the PMHQ score showed a significant difference between the groups (11.43; P<.001; d=0.82). Significant changes were reported in 5 of the 6 factors, especially F5?Problem solving and self-actualization (5.69; P<.001; d=0.71), F2?Prosocial attitude (2.47; P<.001; d=1.18), and F3?Self-control (0.76; P=.03; d=0.50). The results of the ZBI-7 showed a decrease in caregiver burden in the intervention group, although the results were inconclusive. Approximately 93.9% (46/49) of the app users indicated that they would recommend the app to other caregivers and 56.3% (27/49) agreed that an extension of the program?s duration would be beneficial. Conclusions: The app-based intervention program analyzed in this study was effective in promoting positive mental health and decreasing the burden of caregivers and achieved a high range of user satisfaction. This study provides evidence that mobile phone app?based intervention programs may be useful tools for increasing nonprofessional caregivers? well-being. The assessment of the effectiveness of intervention programs through clinical trials should be a focus to promote internet-based programs in health policies. Trial Registration: ISRCTN Registry ISRCTN14818443; http://www.isrctn.com/ISRCTN14818443 International Registered Report Identifier (IRRID): RR2-10.1186/s12889-019-7264-5 UR - http://mhealth.jmir.org/2021/1/e21708/ UR - http://dx.doi.org/10.2196/21708 UR - http://www.ncbi.nlm.nih.gov/pubmed/33480852 ID - info:doi/10.2196/21708 ER - TY - JOUR AU - Bernie, Charmaine AU - Williams, Katrina AU - Graham, Fiona AU - May, Tamara PY - 2021/1/7 TI - Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support JO - JMIR Res Protoc SP - e20011 VL - 10 IS - 1 KW - coaching KW - Occupational Performance Coaching KW - feasibility KW - parents KW - caregivers KW - ASD KW - autism KW - waiting list KW - referral KW - service navigation N2 - Background: In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. Objective: The aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. Methods: A pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the sample characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. Results: The study was approved by The Royal Children?s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. Conclusions: Study findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620000164998; www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378793&isReview=true International Registered Report Identifier (IRRID): DERR1-10.2196/20011 UR - https://www.researchprotocols.org/2021/1/e20011 UR - http://dx.doi.org/10.2196/20011 UR - http://www.ncbi.nlm.nih.gov/pubmed/33410761 ID - info:doi/10.2196/20011 ER - TY - JOUR AU - Levinson, J. Anthony AU - Ayers, Stephanie AU - Butler, Lianna AU - Papaioannou, Alexandra AU - Marr, Sharon AU - Sztramko, Richard PY - 2020/10/2 TI - Barriers and Facilitators to Implementing Web-Based Dementia Caregiver Education From the Clinician?s Perspective: Qualitative Study JO - JMIR Aging SP - e21264 VL - 3 IS - 2 KW - dementia KW - caregiver KW - online education KW - implementation science KW - internet KW - eHealth N2 - Background: Internet-based dementia caregiver interventions have been shown to be effective for a range of caregiver outcomes; however, little is known about how to best implement them. We developed iGeriCare, an evidence-based, multimedia, web-based educational resource for family caregivers of people living with dementia. Objective: This study aims to obtain feedback and opinions from experts and clinicians involved in dementia care and caregiver education about 1 iGeriCare and 2 barriers and facilitators to implementing a web-based caregiver program. Methods: We carried out semistructured interviews with individuals who had a role in dementia care and/or caregiver education in several key stakeholder settings in Southern Ontario, Canada. We queried participants? perceptions of iGeriCare, caregiver education, the implementation process, and their experience with facilitators and barriers. Transcripts were coded and analyzed using a grounded theory approach. The themes that emerged were organized using the Consolidated Framework for Implementation Research. Results: A total of 12 participants from a range of disciplines described their perceptions of iGeriCare and identified barriers and facilitators to the implementation of the intervention. The intervention was generally perceived as a high-quality resource for caregiver education and support, with many stakeholders highlighting the relative advantage of a web-based format. The intervention was seen to meet dementia caregiver needs, partially because of its flexibility, accessibility, and compatibility within existing clinical workflows. In addition, the intervention helps to overcome time constraints for both caregivers and clinicians. Conclusions: Study findings indicate a generally positive response to the use of internet-based interventions for dementia caregiver education. Results suggest that iGeriCare may be a useful clinical resource to complement traditional face-to-face and print material?based caregiver education. More comprehensive studies are required to identify the effectiveness and longevity of web-based caregiver education interventions and to better understand barriers and facilitators with regard to the implementation of technology-enhanced caregiver educational interventions in various health care settings. UR - http://aging.jmir.org/2020/2/e21264/ UR - http://dx.doi.org/10.2196/21264 UR - http://www.ncbi.nlm.nih.gov/pubmed/33006563 ID - info:doi/10.2196/21264 ER - TY - JOUR AU - Leng, Minmin AU - Zhao, Yajie AU - Xiao, Hongmei AU - Li, Ce AU - Wang, Zhiwen PY - 2020/9/9 TI - Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis JO - J Med Internet Res SP - e19468 VL - 22 IS - 9 KW - family caregivers KW - dementia KW - supportive interventions KW - internet KW - systematic review N2 - Background: Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective: This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods: An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results: In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=?0.21; 95% CI ?0.31 to ?0.10; P<.001), perceived stress (SMD=?0.40; 95% CI ?0.55 to ?0.24; P<.001), anxiety (SMD=?0.33; 95% CI ?0.51 to ?0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions: Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration: PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434 UR - http://www.jmir.org/2020/9/e19468/ UR - http://dx.doi.org/10.2196/19468 UR - http://www.ncbi.nlm.nih.gov/pubmed/32902388 ID - info:doi/10.2196/19468 ER - TY - JOUR AU - Croucher, Lauren AU - Mertan, Elif AU - Shafran, Roz AU - Bennett, D. Sophie PY - 2020/9/3 TI - The Use of Mumsnet by Parents of Young People With Mental Health Needs: Qualitative Investigation JO - JMIR Ment Health SP - e18271 VL - 7 IS - 9 KW - mental health KW - parenting KW - internet KW - evidence-based medicine N2 - Background: There are high rates of mental health needs in children in the United Kingdom, and parents are increasingly seeking help for their children's needs. However, there is not enough access to child and adolescent mental health services and parents are seeking alternative forms of support and information, often from web-based sources. Mumsnet is the largest web-based parenting forum in the United Kingdom, which includes user-created discussions regarding child mental health. Objective: This qualitative investigation aimed to explore the emergent themes within the narratives of posts regarding child mental health on Mumsnet and to extrapolate these themes to understand the purpose of Mumsnet for parents of children and young people with mental health needs. Methods: A total of 50 threads from Mumsnet Talk Child Mental Health were extracted. Following the application of inclusion and exclusion criteria, 41 threads were analyzed thematically using the framework approach, a form of qualitative thematic analysis. Results: In total, 28 themes were extracted and organized into 3 domains. These domains were emotional support, emotional expression, and advice and information. The results suggested that parents of children with mental health needs predominantly use Mumsnet to offer and receive emotional support and to suggest general advice, techniques, and resources that could be applied outside of help from professional services. Conclusions: This paper discusses the future of health information seeking. Future research is required to establish initiatives in which web-based peer-to-peer support and information can supplement professional services to provide optimum support for parents of children with mental health needs. UR - https://mental.jmir.org/2020/9/e18271 UR - http://dx.doi.org/10.2196/18271 UR - http://www.ncbi.nlm.nih.gov/pubmed/32880583 ID - info:doi/10.2196/18271 ER - TY - JOUR AU - Yu, Yu AU - Li, Tongxin AU - Xi, Shijun AU - Li, Yilu AU - Xiao, Xi AU - Yang, Min AU - Ge, Xiaoping AU - Xiao, Shuiyuan AU - Tebes, Jacob PY - 2020/8/25 TI - Assessing a WeChat-Based Integrative Family Intervention (WIFI) for Schizophrenia: Protocol for a Stepped-Wedge Cluster Randomized Trial JO - JMIR Res Protoc SP - e18538 VL - 9 IS - 8 KW - schizophrenia KW - family intervention KW - WeChat KW - psychoeducation KW - peer support KW - professional support KW - stepped wedge N2 - Background: Schizophrenia is a persistent and debilitating mental illness, and its prognosis depends largely on supportive care and systematic treatment. In developing countries like China, families constitute the major caregiving force for schizophrenia and are faced with many challenges, such as lack of knowledge, skills, and resources. The approach to support family caregiving in an accessible, affordable, feasible, and cost-effective way remains unclear. The wide-spread use of WeChat provides a promising and cost-effective medium for support. Objective: We aim to present a protocol for assessing a WeChat-based integrative family intervention (WIFI) to support family caregiving for schizophrenia. Methods: We will develop a WIFI program that includes the following three core components: (1) psychoeducation (WeChat official account), (2) peer support (WeChat chat group), and (3) professional support (WeChat video chat). A rigorous stepped-wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with Changsha Psychiatric Hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every 2 months during an 8-month intervention period in four clusters of three communities each. Outcomes will be assessed for both family caregivers and people with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support, coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. People with schizophrenia will be assessed for their symptoms, functioning, quality of life, recovery, and rehospitalization. Cost data, such as intervention costs, health care utilization costs, and costs associated with lost productivity, will be collected. Moreover, we will collect process data, including fidelity and quality of program implementation, as well as user attitude data. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost-effectiveness ratios. Qualitative analysis will use the grounded theory approach and immersion-crystallization process. Results: The study was funded in August 2018 and approved by the institutional review board on January 15, 2019. Preliminary baseline data collection was conducted in May 2019 and completed in September 2019. The WIFI program is expected to start in September 2020. Conclusions: This is the first study to assess a WeChat-based mHealth intervention to support family caregiving for schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for people with schizophrenia, and the approach could potentially be integrated into national policy and adapted for use in other populations. Trial Registration: ClinicalTrials.gov NCT04393896; https://clinicaltrials.gov/ct2/show/NCT04393896. International Registered Report Identifier (IRRID): PRR1-10.2196/18538 UR - http://www.researchprotocols.org/2020/8/e18538/ UR - http://dx.doi.org/10.2196/18538 UR - http://www.ncbi.nlm.nih.gov/pubmed/32687478 ID - info:doi/10.2196/18538 ER - TY - JOUR AU - Xie, Bo AU - Tao, Cui AU - Li, Juan AU - Hilsabeck, C. Robin AU - Aguirre, Alyssa PY - 2020/8/20 TI - Artificial Intelligence for Caregivers of Persons With Alzheimer?s Disease and Related Dementias: Systematic Literature Review JO - JMIR Med Inform SP - e18189 VL - 8 IS - 8 KW - Alzheimer disease KW - dementia KW - caregiving KW - technology KW - artificial intelligence N2 - Background: Artificial intelligence (AI) has great potential for improving the care of persons with Alzheimer?s disease and related dementias (ADRD) and the quality of life of their family caregivers. To date, however, systematic review of the literature on the impact of AI on ADRD management has been lacking. Objective: This paper aims to (1) identify and examine literature on AI that provides information to facilitate ADRD management by caregivers of individuals diagnosed with ADRD and (2) identify gaps in the literature that suggest future directions for research. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for conducting systematic literature reviews, during August and September 2019, we performed 3 rounds of selection. First, we searched predetermined keywords in PubMed, Cumulative Index to Nursing and Allied Health Literature Plus with Full Text, PsycINFO, IEEE Xplore Digital Library, and the ACM Digital Library. This step generated 113 nonduplicate results. Next, we screened the titles and abstracts of the 113 papers according to inclusion and exclusion criteria, after which 52 papers were excluded and 61 remained. Finally, we screened the full text of the remaining papers to ensure that they met the inclusion or exclusion criteria; 31 papers were excluded, leaving a final sample of 30 papers for analysis. Results: Of the 30 papers, 20 reported studies that focused on using AI to assist in activities of daily living. A limited number of specific daily activities were targeted. The studies? aims suggested three major purposes: (1) to test the feasibility, usability, or perceptions of prototype AI technology; (2) to generate preliminary data on the technology?s performance (primarily accuracy in detecting target events, such as falls); and (3) to understand user needs and preferences for the design and functionality of to-be-developed technology. The majority of the studies were qualitative, with interviews, focus groups, and observation being their most common methods. Cross-sectional surveys were also common, but with small convenience samples. Sample sizes ranged from 6 to 106, with the vast majority on the low end. The majority of the studies were descriptive, exploratory, and lacking theoretical guidance. Many studies reported positive outcomes in favor of their AI technology?s feasibility and satisfaction; some studies reported mixed results on these measures. Performance of the technology varied widely across tasks. Conclusions: These findings call for more systematic designs and evaluations of the feasibility and efficacy of AI-based interventions for caregivers of people with ADRD. These gaps in the research would be best addressed through interdisciplinary collaboration, incorporating complementary expertise from the health sciences and computer science/engineering?related fields. UR - http://medinform.jmir.org/2020/8/e18189/ UR - http://dx.doi.org/10.2196/18189 UR - http://www.ncbi.nlm.nih.gov/pubmed/32663146 ID - info:doi/10.2196/18189 ER - TY - JOUR AU - Jansen, Ronelle AU - Reid, Marianne PY - 2020/8/19 TI - Communication Technology Use by Caregivers of Adolescents With Mental Health Issues: Systematic Review JO - JMIR Mhealth Uhealth SP - e13179 VL - 8 IS - 8 KW - caregiver KW - communication technology KW - adolescent KW - mental health issues KW - systematic review KW - self-efficacy, knowledge KW - parental skills KW - IMBP N2 - Background: Caregivers of adolescents with mental health issues experience challenges that may result in the caregivers having a variety of unmet needs. There is a growing need to support these caregivers. Effective support to strengthen positive caregiving behavior in caregivers may address their challenges. Communication technologies offer novel opportunities to assist these caregivers and may contribute to strengthening caregiver behavior. However, little is known about the use of communication technologies among caregivers of adolescents with mental health issues. Objective: The study aimed to answer the question: ?What is the best evidence available to strengthen positive behavior of caregivers of adolescents with mental health issues using communication technology.? Methods: A systematic review of articles published between January 2007 and August 2018 was conducted. Searches included articles of multiple study designs from EBSCO Host and Scopus platforms with prespecified eligibility criteria. Methodological quality was evaluated using the applicable Critical Appraisal Skills Programme and Joanna Briggs Institute assessment tools. Results: The search yielded 1746 articles. Altogether, 5 articles met the eligibility criteria and were included in the review for data synthesis. Data analysis and synthesis identified three thematic conclusions reflecting the types of communication technologies used, caregivers as the target population, and strengthening of positive behavior through determinants of the Integrated Model of Behavior Prediction. Conclusions: The review reported the usefulness of communication technology by caregivers. Caregivers also demonstrated improvement in self-efficacy, knowledge, parent-child communication, and parental skills reflecting positive behavior. Although the use of communication technology is expanding as a supportive intervention to address caregivers? needs, the evidence for usefulness among caregivers of adolescents with mental health issues is still scarce. More research and information related to preferred methods of communication delivery among caregivers of adolescents is still needed. UR - http://mhealth.jmir.org/2020/8/e13179/ UR - http://dx.doi.org/10.2196/13179 UR - http://www.ncbi.nlm.nih.gov/pubmed/32663143 ID - info:doi/10.2196/13179 ER - TY - JOUR AU - Romm, Lie Kristin AU - Nilsen, Liv AU - Gjermundsen, Kristine AU - Holter, Marit AU - Fjell, Anne AU - Melle, Ingrid AU - Repål, Arne AU - Lobban, Fiona PY - 2020/7/28 TI - Remote Care for Caregivers of People With Psychosis: Mixed Methods Pilot Study JO - JMIR Ment Health SP - e19497 VL - 7 IS - 7 KW - REACT KW - psychosis KW - family work KW - early intervention KW - psychoeducation KW - mental health service KW - innovation KW - eHealth N2 - Background: A reduced availability of resources has hampered the implementation of family work in psychosis. Web-based support programs have the potential to increase access to high-quality, standardized resources. This pilot study tested the Norwegian version of the Relatives Education and Coping Toolkit (REACT), a web-based United Kingdom National Health Service program in combination with phone-based support by trained family therapists. Objective: We investigated how the program was perceived by its users and identified the facilitators and barriers to its clinical implementation. Methods: Relatives of people with psychosis were offered access to REACT and to weekly family therapist support (with 1 of 2 trained family therapists) for 26 weeks. Level of distress and level of expressed emotion data were collected at baseline and after 26 weeks using the Family Questionnaire and the Relatives Stress Scale. Both family therapists and a subset of the relatives were interviewed about their experiences after completing the program. Results: During the program, relatives (n=19) had a median of 8 (range 4-11) consultations with the family therapists. Postintervention, there was a significant reduction in stress and in expressed emotions in the relatives of people with psychosis. Interviews with the relatives (n=7) and the family therapists (n=2) indicated the following themes as important?the intervention turned knowledge into action; the intervention strengthened the feeling of being involved and taken seriously by the health services; and management support and the ability for self-referral were important, while lack of reimbursement and clinician resistance to technology were barriers to implementation. Conclusions: The service was found to offer a valued clinical benefit; however, strategies that aim to engage clinicians and increase organizational support toward new technology need to be developed. UR - http://mental.jmir.org/2020/7/e19497/ UR - http://dx.doi.org/10.2196/19497 UR - http://www.ncbi.nlm.nih.gov/pubmed/32720905 ID - info:doi/10.2196/19497 ER - TY - JOUR AU - Fuller-Tyszkiewicz, Matthew AU - Richardson, Ben AU - Little, Keriann AU - Teague, Samantha AU - Hartley-Clark, Linda AU - Capic, Tanja AU - Khor, Sarah AU - Cummins, A. Robert AU - Olsson, A. Craig AU - Hutchinson, Delyse PY - 2020/7/24 TI - Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial JO - JMIR Ment Health SP - e17541 VL - 7 IS - 7 KW - mHealth KW - mobile phone KW - caregiver KW - psychological stress KW - mental health N2 - Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app?based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being. Objective: This study aims to evaluate the effectiveness of a self-guided mobile app?based psychological intervention for people providing care to family or friends with a physical or mental disability. Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed. Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=?2.07; P=.04) and depressive symptoms (b=?1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=?1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=?0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58). Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170 UR - http://mental.jmir.org/2020/7/e17541/ UR - http://dx.doi.org/10.2196/17541 UR - http://www.ncbi.nlm.nih.gov/pubmed/32706716 ID - info:doi/10.2196/17541 ER - TY - JOUR AU - Du, Yan AU - Paiva, Kristi AU - Cebula, Adrian AU - Kim, Seon AU - Lopez, Katrina AU - Li, Chengdong AU - White, Carole AU - Myneni, Sahiti AU - Seshadri, Sudha AU - Wang, Jing PY - 2020/7/6 TI - Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry JO - J Med Internet Res SP - e17851 VL - 22 IS - 7 KW - diabetes KW - Alzheimer disease KW - dementia KW - caregivers N2 - Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. Objective: This study aims to explore diabetes-related topics in the Alzheimer?s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer?s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher?s input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted. UR - http://www.jmir.org/2020/7/e17851/ UR - http://dx.doi.org/10.2196/17851 UR - http://www.ncbi.nlm.nih.gov/pubmed/32628119 ID - info:doi/10.2196/17851 ER - TY - JOUR AU - Potts, Courtney AU - Bond, Raymond AU - Ryan, Assumpta AU - Mulvenna, Maurice AU - McCauley, Claire AU - Laird, Elizabeth AU - Goode, Deborah PY - 2020/7/6 TI - Ecological Momentary Assessment Within a Digital Health Intervention for Reminiscence in Persons With Dementia and Caregivers: User Engagement Study JO - JMIR Mhealth Uhealth SP - e17120 VL - 8 IS - 7 KW - ecological momentary assessment KW - EMA KW - app KW - behaviour analytics KW - event logging KW - dementia KW - carers KW - reminiscence KW - reminiscing KW - mHealth N2 - Background: User-interaction event logs provide rich and large data sets that can provide valuable insights into how people engage with technology. Approaches such as ecological momentary assessment (EMA) can be used to gather accurate real-time data in an individual?s natural environment by asking questions at any given instant. Objective: The purpose of this study was to evaluate user engagement and responses to EMA questions using InspireD, an app used for reminiscence by persons with dementia and their caregivers. Research findings can be used to inform EMA use within digital health interventions. Methods: A feasibility trial was conducted in which participants (n=56) used the InspireD app over a 12-week period. Participants were a mean age of 73 (SD 13) and were either persons with dementia (n=28) or their caregivers (n=28). Questions, which they could either answer or choose to dismiss, were presented to participants at various instants after reminiscence with personal or generic photos, videos, and music. Presentation and dismissal rates for questions were compared by hour of the day and by trial week to investigate user engagement. Results: Overall engagement was high, with 69.1% of questions answered when presented. Questions that were presented in the evening had the lowest dismissal rate; the dismissal rate for questions presented at 9 PM was significantly lower than the dismissal rate for questions presented at 11 AM (9 PM: 10%; 11 AM: 50%; ?21=21.4, P<.001). Questions asked following reminiscence with personal media, especially those asked after personal photos, were less likely to be answered compared to those asked after other media. In contrast, questions asked after the user had listened to generic media, in particular those asked after generic music, were much more likely to be answered. Conclusions: The main limitation of our study was the lack of generalizability of results to a larger population given the quasi-experimental design and older demographic where half of participants were persons with dementia; however, this study shows that older people are willing to participate and engage in EMA. Based on this study, we propose a series of recommendations for app design to increase user engagement with EMA. These include presenting questions no more than once per day, after 8 PM in the evening, and only if the user is not trying to complete a task within the app. UR - https://mhealth.jmir.org/2020/7/e17120 UR - http://dx.doi.org/10.2196/17120 UR - http://www.ncbi.nlm.nih.gov/pubmed/32420890 ID - info:doi/10.2196/17120 ER - TY - JOUR AU - Christie, Liane Hannah AU - Schichel, Philomela Mignon Chloë AU - Tange, Johannes Huibert AU - Veenstra, Yvonne Marja AU - Verhey, Josef Frans Rochus AU - de Vugt, Elizabeth Marjolein PY - 2020/5/13 TI - Perspectives From Municipality Officials on the Adoption, Dissemination, and Implementation of Electronic Health Interventions to Support Caregivers of People With Dementia: Inductive Thematic Analysis JO - JMIR Aging SP - e17255 VL - 3 IS - 1 KW - dementia KW - caregiver KW - internet KW - eHealth KW - implementation, senior friendly communities N2 - Background: Very few evidence-based electronic health (eHealth) interventions for caregivers of people with dementia are implemented into practice. As part of a cross-border collaboration focusing on dementia and depression in older people, two eHealth interventions for caregivers of people with dementia (?Myinlife? and ?Partner in Balance?) were adopted by nine municipalities in the Euregion Meuse-Rhine. Objective: This study aimed to (1) identify determinants for the implementation of eHealth interventions for caregivers of people with dementia in a municipality context and (2) formulate implementation strategies for these interventions. Methods: Eight municipality officials were interviewed using open-ended, semistructured interviews about their background, thoughts on the implementation of the intervention, recommended strategies, and thoughts on eHealth in general. One additional municipality discontinued the implementation project and submitted answers to the interview questions via email. The interviews were transcribed and independently analyzed using inductive thematic analysis. Results: The interviews provided information on the perspectives of municipality officials on implementing eHealth for caregivers of people with dementia in their local communities. Key findings from the inductive thematic analysis included the importance of face-to-face interviews in developing tailor-made implementation plans, the need for regular meetings, the enthusiasm of municipality officials to implement these interventions, the need for long-term sustainability planning through collecting data on the required resources and benefits, and the effect of name brand recognition in adoption. Conclusions: The findings contribute toward filling the previously identified gap in the literature on the implementation context of eHealth interventions for caregivers of people with dementia. Municipality officials? views indicated which implementation determinants they expected would influence the adoption, dissemination, and future implementation of eHealth interventions for caregivers of people with dementia in a municipal context. These insights were applied to tailored implementation strategies to facilitate the future implementation of interventions such as Myinlife and Partner in Balance. UR - http://aging.jmir.org/2020/1/e17255/ UR - http://dx.doi.org/10.2196/17255 UR - http://www.ncbi.nlm.nih.gov/pubmed/32401217 ID - info:doi/10.2196/17255 ER - TY - JOUR AU - Trail, Thomas AU - Friedman, Esther AU - Rutter, M. Carolyn AU - Tanielian, Terri PY - 2020/4/23 TI - The Relationship Between Engagement in Online Support Groups and Social Isolation Among Military Caregivers: Longitudinal Questionnaire Study JO - J Med Internet Res SP - e16423 VL - 22 IS - 4 KW - caregivers KW - family caregivers KW - social isolation KW - loneliness KW - depression KW - social support KW - online intervention KW - self-help groups KW - veterans health N2 - Background: There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. Objective: This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. Methods: We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. Results: Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. Conclusions: Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms. UR - http://www.jmir.org/2020/4/e16423/ UR - http://dx.doi.org/10.2196/16423 UR - http://www.ncbi.nlm.nih.gov/pubmed/32324141 ID - info:doi/10.2196/16423 ER - TY - JOUR AU - Shaffer, M. Kelly AU - Tigershtrom, Ashley AU - Badr, Hoda AU - Benvengo, Stephanie AU - Hernandez, Marisol AU - Ritterband, M. Lee PY - 2020/3/4 TI - Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review JO - J Med Internet Res SP - e15509 VL - 22 IS - 3 KW - behavioral medicine KW - caregivers KW - couples therapy KW - dyads KW - eHealth KW - family therapy KW - internet interventions KW - psychosocial interventions KW - review N2 - Background: Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. Objective: This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. Methods: A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. Results: A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). Conclusions: This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care. UR - https://www.jmir.org/2020/3/e15509 UR - http://dx.doi.org/10.2196/15509 UR - http://www.ncbi.nlm.nih.gov/pubmed/32130143 ID - info:doi/10.2196/15509 ER - TY - JOUR AU - Huis in het Veld, G. Judith AU - Willemse, M. Bernadette AU - van Asch, FM Iris AU - Groot Zwaaftink, BM Rob AU - Verkade, Paul-Jeroen AU - Twisk, WR Jos AU - Verkaik, Renate AU - Blom, M. Marco AU - van Meijel, Berno AU - Francke, L. Anneke PY - 2020/2/25 TI - Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial JO - J Med Internet Res SP - e13001 VL - 22 IS - 2 KW - dementia KW - family caregivers KW - self-management KW - support KW - intervention N2 - Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention?involving among others personal email contacts with a dementia nurse?was compared with online interventions without these email contacts. Methods: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers? self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers? reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference ?0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference ?4.21, P=.09) and at T1 (difference ?4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. Trial Registration: Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC) International Registered Report Identifier (IRRID): RR2-10.2196/resprot.8365 UR - http://www.jmir.org/2020/2/e13001/ UR - http://dx.doi.org/10.2196/13001 UR - http://www.ncbi.nlm.nih.gov/pubmed/32130142 ID - info:doi/10.2196/13001 ER - TY - JOUR AU - Guo, Yuqi AU - Yang, Fan AU - Hu, Fei AU - Li, Wei AU - Ruggiano, Nicole AU - Lee, Yun Hee PY - 2020/1/24 TI - Existing Mobile Phone Apps for Self-Care Management of People With Alzheimer Disease and Related Dementias: Systematic Analysis JO - JMIR Aging SP - e15290 VL - 3 IS - 1 KW - alzheimer disease KW - dementia KW - self-care KW - mobile phone apps N2 - Background: Alzheimer disease and related dementias (AD/RD) are progressive neurocognitive disorders that currently affect approximately 50 million people worldwide. Mobile phone apps have been well-integrated into daily lives and can be used to deliver and promote health care. There is an increase in the use of technology to provide care and support to AD/RD patients and their families. Objective: This study aimed to review apps designed for AD/RD patients and analyze the benefits of, and challenges to, such technological solutions. Methods: A systematic approach was applied to review the availability, content, features, and quality of mobile phone apps to support self-care among AD/RD patients. Results: The initial search for this review was conducted in January 2019, and the screening and analysis of the included apps were completed in May 2019. A total of 14 apps were included from an initial search of 245 apps. The top 3 features were alert (9/14, 64%), self-care tips (6/14, 42%), and social networking capacity (5/14, 35%). On average, the readability of the apps was a tenth-grade reading level (SD 3.06). The overall quality was 3.71 out of 5 (SD 1.37). Conclusions: Our findings suggest that currently available apps for AD/RD patients may not meet complex needs and may be challenging to use, given the possible impaired communication ability associated with AD/RD. Therefore, high-quality apps need to be developed and rigorously evaluated for feasibility and efficacy. UR - http://aging.jmir.org/2020/1/e15290/ UR - http://dx.doi.org/10.2196/15290 UR - http://www.ncbi.nlm.nih.gov/pubmed/32012045 ID - info:doi/10.2196/15290 ER - TY - JOUR AU - Duggleby, Wendy AU - Ploeg, Jenny AU - McAiney, Carrie AU - Fisher, Kathryn AU - Jovel Ruiz, Kathya AU - Ghosh, Sunita AU - Peacock, Shelley AU - Markle-Reid, Maureen AU - Williams, Allison AU - Triscott, Jean AU - Swindle, Jennifer PY - 2019/10/17 TI - A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis JO - J Med Internet Res SP - e14254 VL - 21 IS - 10 KW - Web-based intervention KW - carers KW - dementia KW - multiple chronic conditions KW - program evaluation N2 - Background: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period. Objective: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. Methods: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants? hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. Results: Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). Conclusions: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. Trial Registration: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 UR - https://www.jmir.org/2019/10/e14254 UR - http://dx.doi.org/10.2196/14254 UR - http://www.ncbi.nlm.nih.gov/pubmed/31625947 ID - info:doi/10.2196/14254 ER - TY - JOUR AU - Huis in het Veld, G. Judith AU - van Asch, M. Iris F. AU - Willemse, M. Bernadette AU - Verkade, Paul-Jeroen AU - Pot, Margriet Anne AU - Blom, M. Marco AU - Groot Zwaaftink, M. Rob B. AU - Francke, L. Anneke PY - 2019/10/11 TI - Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study JO - J Med Internet Res SP - e13002 VL - 21 IS - 10 KW - dementia KW - internet KW - eHealth KW - caregiver N2 - Background: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them. Objective: The aim of this study was to understand (1) family caregivers? actual use of various elements of the online self-management support, (2) family caregivers? evaluation and satisfaction with the various elements, and (3) nurses? usage and evaluations of the online support through the tailored email contacts. Methods: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses? registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts. Results: The actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses? evaluations about providing self-management support online were mixed as it was a relatively new task for them. Conclusions: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations. UR - https://www.jmir.org/2019/10/e13002 UR - http://dx.doi.org/10.2196/13002 UR - http://www.ncbi.nlm.nih.gov/pubmed/31605517 ID - info:doi/10.2196/13002 ER - TY - JOUR AU - Pinto-Bruno, C. Ángel AU - Pot, Margriet Anne AU - Kleiboer, Annet AU - Droes, Rose-Marie AU - van Straten, Annemieke PY - 2019/10/10 TI - An Online Minimally Guided Intervention to Support Family and Other Unpaid Carers of People With Dementia: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e14106 VL - 8 IS - 10 KW - informal carers KW - dementia KW - ICT intervention KW - online KW - perceived stress N2 - Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online. Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers? mental health and coping resources. Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers? attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia). Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020. Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal. Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417 International Registered Report Identifier (IRRID): DERR1-10.2196/14106 UR - http://www.researchprotocols.org/2019/10/e14106/ UR - http://dx.doi.org/10.2196/14106 UR - http://www.ncbi.nlm.nih.gov/pubmed/31603433 ID - info:doi/10.2196/14106 ER - TY - JOUR AU - Sin, Jacqueline AU - Henderson, Claire AU - Woodham, A. Luke AU - Sesé Hernández, Aurora AU - Gillard, Steve PY - 2019/08/06 TI - A Multicomponent eHealth Intervention for Family Carers for People Affected by Psychosis: A Coproduced Design and Build Study JO - J Med Internet Res SP - e14374 VL - 21 IS - 8 KW - eHealth KW - family caregivers KW - psychosis KW - mental health KW - participatory research KW - public and patient involvement KW - coproduction N2 - Background: Psychosis, including schizophrenia, is the most common severe mental illness affecting 1% of the population worldwide. A large number of people provide long-term support and care for a relative with psychosis. Although psychoeducational interventions, especially those delivered through a face-to-face group format, have an established evidence base for improving the caregiving experience, well-being, and health outcomes, large-scale implementation and access remain limited. There is a demand for such provision to be made through the internet for greater flexibility and wider access. Objective: This study aimed to integrate participatory research methodologies by the public, patients, and carers into the eHealth (electronic health) intervention design and build process to improve the product?s usability and acceptability. Methods: We adapted a structured eHealth intervention build method to include participatory research activities involving key stakeholders and end users to co-design and coproduce our intervention. An expert advisory group (EAG) comprising public involvement members led the formative design and build work using an agile build process. Carers independent from the study were consulted on the evolving drafts of the intervention prototype through focus group meetings. These results were fed back into the intervention build work continuously to ensure end users? input inform every stage of the process. Results: An EAG comprising individuals with lived experience of psychosis, carers, health care professionals, researchers, voluntary organization workers, and eLearning experts (n=14) was established. A total of 4 coproduction workshops were held over 1 year during which the alpha and beta prototypes were designed and built through the participatory research work. Alongside this, 2 rounds of focus group study with carers (n=24, in 4 groups) were conducted to seek consultation on end users? views and ideas to optimize the intervention design and usability. Finally, the EAG carried out a Web-based walk-through exercise on the intervention prototype and further refined it to make it ready for an online usability test. The final product contains multiple sections providing information on psychosis and related caregiving topics and interactive discussion forums with experts and peers for psychosocial support. It provides psychoeducation and psychosocial support for carers through the internet, promoting flexible access and individualized choices of information and support. Conclusions: The participatory research work led to the coproduction of a eHealth intervention called COPe-support (Carers fOr People with Psychosis e-support). We believe the study methodology, results, and output have optimized the intervention design and usability, fitting the end users? needs and usage pattern. COPe-support is currently being tested for its effectiveness in promoting carers? health outcome through an online randomized controlled trial. Trial Registration: ISRCTN Registry ISRCTN89563420; http://www.isrctn.com/ISRCTN89563420 UR - https://www.jmir.org/2019/8/e14374/ UR - http://dx.doi.org/10.2196/14374 UR - http://www.ncbi.nlm.nih.gov/pubmed/31389333 ID - info:doi/10.2196/14374 ER - TY - JOUR AU - Spencer, Lucy AU - Potterton, Rachel AU - Allen, Karina AU - Musiat, Peter AU - Schmidt, Ulrike PY - 2019/07/09 TI - Internet-Based Interventions for Carers of Individuals With Psychiatric Disorders, Neurological Disorders, or Brain Injuries: Systematic Review JO - J Med Internet Res SP - e10876 VL - 21 IS - 7 KW - internet KW - carers KW - mental health KW - technology KW - review N2 - Background: Nonprofessional carers who provide support to an individual with a psychiatric or neurological disorder will often themselves experience symptoms of stress, anxiety, or low mood, and they perceive that they receive little support. Internet-based interventions have previously been found to be effective in the prevention and treatment of a range of mental health difficulties in carers. Objective: This review seeks to establish the status of internet-based interventions for informal (nonprofessional) carers of people with psychiatric or neurological disorders by investigating (1) the number and quality of studies evaluating the efficacy or effectiveness of internet-based carer interventions and (2) the impact that such interventions have on carer mental health, as well as (3) how internet-based interventions compare with other intervention types (eg, face-to-face treatment). Methods: A systematic literature search was conducted in January 2019 using the EMBASE (1974-present), Ovid MEDLINE (1946-present), PsychARTICLES, PsychINFO (1806-present), and Global Health (1973-present) databases, via the Ovid Technologies database. Search terms included carer, caregiver, online, technology, internet-based, internet, interactive, intervention, and evaluation. Studies selected for inclusion in this review met the following predetermined criteria: (1) delivering an intervention aimed primarily at informal carers, (2) carers supporting individuals with psychiatric disorders, stroke, dementia, or brain injury, (3) the intervention delivered to the carers was primarily internet based, (4) the study reported a pre- and postquantitative measure of carer depression, anxiety, stress, burden, or quality of life, (5) appeared in a peer-reviewed journal, and (6) was accessible in English. Results: A total of 46 studies were identified for inclusion through the detailed search strategy. The search was conducted, and data were extracted independently by 2 researchers. The majority of studies reported that 1 or more measures relating to carer mental health improved following receipt of a relevant intervention, with interventions for carers of people with traumatic brain injury showing a consistent link with improved outcomes. Conclusions: Studies investigating internet-based interventions for carers of individuals with diverse psychiatric or neurological difficulties show some evidence in support of the effectiveness of these interventions. In addition, such interventions are acceptable to carers. Available evidence is of varying quality, and more high-quality trials are needed. Further research should also establish how specific intervention components, such as structure or interactivity, contribute to their overall efficacy with regard to carer mental health. UR - https://www.jmir.org/2019/7/e10876/ UR - http://dx.doi.org/10.2196/10876 UR - http://www.ncbi.nlm.nih.gov/pubmed/31290399 ID - info:doi/10.2196/10876 ER - TY - JOUR AU - Rockwood, Kenneth AU - Sanon Aigbogun, Myrlene AU - Stanley, Justin AU - Wong, Helen AU - Dunn, Taylor AU - Chapman, T. Chère A. AU - Howlett, E. Susan AU - Miguelez, Maia AU - McGarrigle, Lisa AU - Baker, A. Ross PY - 2019/06/28 TI - The Symptoms Targeted for Monitoring in a Web-Based Tracking Tool by Caregivers of People With Dementia and Agitation: Cross-Sectional Study JO - J Med Internet Res SP - e13360 VL - 21 IS - 6 KW - Alzheimer disease KW - dementia KW - agitation KW - neuropsychiatric symptoms KW - internet KW - caregiver N2 - Background: In people with dementia, neuropsychiatric symptoms (NPSs), especially agitation, are associated with worse quality of life and caregiver burden. As NPSs may vary with illness severity, knowledge of how people with dementia and their caregivers describe and rate the importance of agitation symptoms can improve the understanding of the clinical meaningfulness of the manifestations of agitation. The internet provides new opportunities to better understand patient experiences, as patients and caregivers increasingly look to Web-based platforms as a means of managing symptoms. Objective: The aim of this study was to examine Web-based reports from a dementia symptom website to better understand the symptoms of agitation and explore how they are being targeted for monitoring by caregivers of people with dementia. Methods: The Dementia Guide website hosts a Web-based database used by caregivers (97%) and people with dementia (3%). From its 61 dementia symptoms, users can select relevant symptoms that they deem important to monitor or track the effects of treatment. We employed a staging algorithm to determine if individuals had mild cognitive impairment (MCI) or mild, moderate, or severe dementia. Agitation was defined using terms consistent with the International Psychogeriatrics Association?s provisional consensus definition. We compared the proportion of people with NPSs and agitation across stages of dementia severity and studied how many agitation-defining descriptors were selected, and how often they occurred, by stage. Results: As of March 2017, 4121 people had used the tracking tool, of whom 2577 provided sufficient data to allow disease severity staging. NPSs were tracked by 2127/2577 (82.54%) and agitation by 1898/2577 (73.65%). The proportion in whom agitation was tracked increased with increasing cognitive impairment: 68.5% (491/717) in people with MCI, and 72.50% (754/1040), 73.3% (378/516), and 90.5% (275/304) in mild, moderate, and severe dementia, respectively (?23=54.9; P<.001). The number of NPS and agitation descriptors selected also increased with severity (median number of NPSs=1, 2, 2, and 3 for MCI, mild, moderate, and severe dementia, respectively, Kruskal-Wallis H Test H3=250.47; P<.001; median number of agitation descriptors=1, 2, 3, and 4, H3=146.11; P<.001). Conclusions: NPSs and agitation are common targets for tracking over the course of dementia and appear more frequently with increasing disease severity. These common and distressing symptoms represent clinically meaningful targets in treating people with dementia. UR - https://www.jmir.org/2019/6/e13360/ UR - http://dx.doi.org/10.2196/13360 UR - http://www.ncbi.nlm.nih.gov/pubmed/31254339 ID - info:doi/10.2196/13360 ER - TY - JOUR AU - Bosch, Lilian AU - Kanis, Marije AU - Dunn, Julia AU - Stewart, A. Kearsley AU - Kröse, Ben PY - 2019/05/28 TI - How Is the Caregiver Doing? Capturing Caregivers? Experiences With a Reflective Toolkit JO - JMIR Ment Health SP - e13688 VL - 6 IS - 5 KW - human-centered design KW - informal caregivers KW - experience sampling KW - home care KW - positive psychology KW - mental health KW - reflective technologies KW - well-being KW - HCI (human computer interaction) N2 - Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one. Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. Results: The results suggest that the toolkit (1) increased caregivers? awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers? day-to-day needs and emotional experiences. UR - http://mental.jmir.org/2019/5/e13688/ UR - http://dx.doi.org/10.2196/13688 UR - http://www.ncbi.nlm.nih.gov/pubmed/31140435 ID - info:doi/10.2196/13688 ER - TY - JOUR AU - Lindauer, Allison AU - McKenzie, Glenise AU - LaFazia, David AU - McNeill, Loriann AU - Mincks, Kate AU - Spoden, Natasha AU - Myers, Marcella AU - Mattek, Nora AU - Teri, L. Linda PY - 2019/05/24 TI - Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention JO - J Med Internet Res SP - e13599 VL - 21 IS - 5 KW - dementia KW - caregiving KW - fidelity N2 - Background: Families living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum?from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings. Objective: This study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR). Methods: A total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist. Results: Tele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C. Conclusions: We found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR. UR - http://www.jmir.org/2019/5/e13599/ UR - http://dx.doi.org/10.2196/13599 UR - http://www.ncbi.nlm.nih.gov/pubmed/31127721 ID - info:doi/10.2196/13599 ER - TY - JOUR AU - Zhao, Yinan AU - Feng, Hui AU - Hu, Mingyue AU - Hu, Hengyu AU - Li, Hui AU - Ning, Hongting AU - Chen, Huijing AU - Liao, Lulu AU - Peng, Linlin PY - 2019/5/6 TI - Web-Based Interventions to Improve Mental Health in Home Caregivers of People With Dementia: Meta-Analysis JO - J Med Internet Res SP - e13415 VL - 21 IS - 5 KW - internet KW - education KW - mental health KW - caregivers KW - dementia N2 - Background: Dementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care. Objective: The aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role. Methods: A comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Results: A total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95% CI ?0.38 to ?0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95% CI ?0.50 to ?0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers? mental health. Conclusions: Internet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required. UR - http://www.jmir.org/2019/5/e13415/ UR - http://dx.doi.org/10.2196/13415 UR - http://www.ncbi.nlm.nih.gov/pubmed/31066680 ID - info:doi/10.2196/13415 ER - TY - JOUR AU - van den Kieboom, CP Robin AU - Bongers, MB Inge AU - Mark, E. Ruth AU - Snaphaan, JAE Liselore PY - 2019/01/28 TI - User-Driven Living Lab for Assistive Technology to Support People With Dementia Living at Home: Protocol for Developing Co-Creation?Based Innovations JO - JMIR Res Protoc SP - e10952 VL - 8 IS - 1 KW - dementia KW - family caregivers KW - longitudinal studies KW - technology N2 - Background: Owing to no cure for dementia currently, there is an urgent need to look for alternative ways to support these people and their informal caregivers. Carefully designed interventions can answer the unmet needs of both people with dementia and their informal caregivers in the community. However, existing products, systems, and services are often too complex or unsuitable. Objective: This study aims to identify, longitudinally, the changing needs (as dementia progresses) of people with dementia living at home and their informal caregivers. By developing co-creation-based innovations, these changing needs will hopefully be met. Methods: A user-driven Living Lab design is used to structurally explore the needs over time of people with dementia (and their informal caregivers) living in the community in the North Brabant region of the Netherlands. In addition, co-creation-based innovations will be developed, tested, and evaluated by these people and their caregivers at home. All participants will complete complaints-oriented questionnaires at 3 time-points?at the baseline, 1 year, and 2 years after they start participating. Home interviews are scheduled to explore if and how these complaints translate into participants? specific needs or wishes. Focus groups meet on a monthly basis to further identify the needs of people with dementia and their informal caregivers and provide feedback to the stakeholders. In the context field, participants have an opportunity to actually test the products at home and provide feedback. Quantitative outcome measurements include neuropsychiatric symptoms, cognitive decline, independence in activities of daily living, safety, and caregiver burden. Qualitative outcome measurements include feedback to the stakeholders regarding the needs of people with dementia and their informal caregivers and how these needs change over time, as well as user experiences about the specific innovations. Results: Participant recruitment will start in September 2018 and is ongoing. The first results of data analyses are expected in the spring of 2019. Conclusions: The overall aim of Innovate Dementia 2.0 is to facilitate person-centered innovations developed for people with dementia and their informal caregivers at all stages as dementia progresses. This should lead to newly designed concepts and innovations, which are better able to answer the needs of people with dementia and their caregivers in the community. International Registered Report Identifier (IRRID): DERR1-10.2196/10952 UR - http://www.researchprotocols.org/2019/1/e10952/ UR - http://dx.doi.org/10.2196/10952 UR - http://www.ncbi.nlm.nih.gov/pubmed/30688653 ID - info:doi/10.2196/10952 ER - TY - JOUR AU - Xie, Bo AU - Champion, Dimmitt Jane AU - Kwak, Jung AU - Fleischmann, R. Kenneth PY - 2018/12/10 TI - Mobile Health, Information Preferences, and Surrogate Decision-Making Preferences of Family Caregivers of People With Dementia in Rural Hispanic Communities: Cross-Sectional Questionnaire Study JO - J Med Internet Res SP - e11682 VL - 20 IS - 12 KW - mHealth KW - dementia KW - caregivers KW - rural communities N2 - Background: Mobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia. Objective: As part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers? preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers? mobile device usage and their desire for receiving information via mobile devices. Methods: This was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities. Results: More women than men were in the patient group (?21=17.2, P<.001) and in the caregiver group (?21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregivers? desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006). Conclusions: Caregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers. UR - https://www.jmir.org/2018/12/e11682/ UR - http://dx.doi.org/10.2196/11682 UR - http://www.ncbi.nlm.nih.gov/pubmed/30530450 ID - info:doi/10.2196/11682 ER - TY - JOUR AU - Onwumere, Juliana AU - Amaral, Filipa AU - Valmaggia, R. Lucia PY - 2018/09/05 TI - Digital Technology for Caregivers of People With Psychosis: Systematic Review JO - JMIR Ment Health SP - e55 VL - 5 IS - 3 KW - carers KW - digital interventions KW - families KW - psychosis KW - technology N2 - Background: Psychotic disorders are severe mental health conditions that adversely affect the quality of life and life expectancy. Schizophrenia, the most common and severe form of psychosis affects 21 million people globally. Informal caregivers (families) are known to play an important role in facilitating patient recovery outcomes, although their own health and well-being could be adversely affected by the illness. The application of novel digital interventions in mental health care for patient groups is rapidly expanding; interestingly, however, far less is known about their role with family caregivers. Objective: This study aimed to systematically identify the application of digital interventions that focus on informal caregivers of people with psychosis and describe their outcomes. Methods: We completed a search for relevant papers in four electronic databases (EMBASE, MEDLINE, PsycINFO, and Web of Science). The search also included the Cochrane database and manual search of reference lists of relevant papers. The search was undertaken in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines. Results: The search identified 9 studies derived from 8 unique datasets. Most studies were assessments of feasibility and were undertaken in the United States. Interventions were predominately Web-based, with a focus on improving the caregivers? knowledge and understanding about psychosis. Conclusions: This study offers preliminary support for the feasibility and acceptability of digital interventions for psychosis in informal caregiver populations. However, the findings underpin a clear need for greater development in the range of caregiver-focused digital approaches on offer and robust evaluation of their outcomes. The use of digital approaches with caregiver populations seemingly lags someway behind the significant developments observed in patient groups. UR - http://mental.jmir.org/2018/3/e55/ UR - http://dx.doi.org/10.2196/mental.9857 UR - http://www.ncbi.nlm.nih.gov/pubmed/30185402 ID - info:doi/10.2196/mental.9857 ER -