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Perinatal mental illness is a global health concern; however, many women do not get the treatment they need to recover. Some women choose not to seek professional help and get no treatment because they feel stigmatized. Online forums for various health conditions, including perinatal mental health, can be beneficial for members. Little is known about the role that online forums for perinatal mental illness play in reducing stigma and subsequent disclosure of symptoms to health care providers and treatment uptake.
This study aimed to examine stigma and disclosure in forums and describe any potential disadvantages of forum use.
An online forum for mothers was examined and 1546 messages extracted from 102 threads from the antenatal and postnatal depression section. These messages were subjected to deductive systematic thematic analysis to identify common themes regarding stigma and disclosure of symptoms and potential disadvantages of forum use.
Two major themes were identified:
Forum use may increase women's disclosure to health care providers by challenging their internal and external stigma and this may strengthen professional treatment uptake and adherence. However, a few posts described negative experiences when disclosing to health care providers.
Perinatal mental illness is a global health concern and includes antenatal and postnatal depression and anxiety disorders, post-traumatic stress disorder after childbirth, and adjustment disorders. Perinatal depression has a prevalence of 12%-20% [
Women with perinatal mental illness often fail to receive treatment despite treatment being available [
Stigma is an extreme disapproval of someone or group of people because of a certain characteristic; it can present as external stigma where the general public holds a stigmatizing attitude. It can also present as internal stigma where the stigmatized individual believes this negative appraisal and applies it to themselves. There are high levels of external stigma in the general population and internal stigma has been identified in approximately a third of people with severe mental illnesses [
Thus, some women may think others will view them negatively for having a mental illness (external stigma) and may also feel bad about themselves for having a mental illness (internal stigma). Stigma is a major barrier to disclosure and help-seeking in the perinatal period [
People suffering from stigmatized illnesses are more likely to turn to the Internet for help [
There are thousands of websites dedicated to perinatal mental health and many online support groups or forums, but little is known about how members engage with them [
A discourse analysis of an online forum for postnatal depression reported how it provided a place for mothers to confess their shame about having perinatal mental illness [
This study aimed to investigate if and how perinatal mental illness forums might overcome the barriers stigma presents to some women with perinatal mental illness when seeking help from health care providers and to see if there are possible disadvantages of using forums regarding disclosure and stigma.
Forums were identified using the three most popular UK search engines (Google, Bing, and Yahoo) that are used by 98.83% of Web users [
Nineteen forum moderators were contacted and written permission from 1 moderator was obtained. Visitors were informed of the nature of the research and their right to withdraw their data via a prominent disclaimer on the forum. A link from the site provided details about what data were taken from the site and how the information was used. The study was retrospective to avoid influencing the participants’ interactions. Confidentiality was maximized by ensuring the anonymity of participants by replacing their user names with pseudo names.
All messages on the antenatal and postnatal forum between January 2013 and June 2013 were included for analysis. This comprised 1546 messages retrieved from 102 threads. The average number of posts in a thread was nearly 28. These threads and messages were copied into Microsoft Word files and stored securely for data protection purposes and because forums can terminate at any time.
The study received ethical approval from the School of Health Sciences Research Ethics Committee, City University London. Precautions were taken to ensure the safety, dignity, and rights of participants in accordance with the 2007 “Guidelines for Ethical Practice in Psychological Research Online” as outlined by the British Psychological Society [
Discussion threads were examined using deductive systematic thematic analysis from a realist stance [
Two major themes were identified: stigma and negative experiences. Stigma had 3 subthemes: internal stigma, external stigma, and treatment stigma.
The majority of women disclosed their symptoms on their first post and often sought advice on diagnosis, whether or not they should contact a health care provider, healthcare providers’ attitudes to illness and treatment. Nearly all the replying posts urged women to contact their healthcare providers and often reassured women who had concerns about approaching health care providers. Women were frequently encouraged to honestly disclose their symptoms to health care providers and take professional treatment offered.
Internal stigma was coded when women wrote about their stigmatized attitudes towards themselves, such as feelings of inadequacy as a mother. Many women used the forum to disclose shameful feelings often hidden from others such as feeling like a failure as a mother, wanting to leave the baby or family, intrusive thoughts of self-harm and child-abuse. They felt that there was no place offline to talk about the negative side of pregnancy and motherhood and valued the nonjudgmental space offered by forums. Replies were often reassuring and challenged internal stigma by stressing that these feelings were part of the illness and not indicative of failure as a mother:
I'm not very compassionate towards myself or accepting of the fact that I was ill (rather than just being crap).
You haven't failed!!! The illness is making you think this way.
External stigma comprised of the concerns many women had about how health care providers would think that they were inadequate mother if they disclosed symptoms.
Members perpetuated a strong culture of advice that urged women to contact a general practitioner, midwife or health visitor even if they did not ask for it. Half of all women who had not disclosed to a health care providers when they first posted replied that they had sought professional help following others' encouragement (n=15):
Thank you have rung the doctor. Think I just needed someone else to tell me to do it.
Nearly half of women who posted did not reply to say if they had taken members advice, and one woman refused to disclose to a health care provider. Women were often reluctant to disclose to their health care providers as they feared being seen as a bad mother and their baby would be taken away or social services would intervene:
I have seen the perinatal team and dr previously but kind of played down my feelings as I am scared that if I show I am not coping with my moods then they might look down on me, see me as an unfit mother and pass me over to social services.
Anyone got any experience with this - what did u say to the DR? What was their approach? Were you made to feel like a bad mum/mum to be? Were you strictly monitored/referred to social services after?
Most replies to these posts were reassuring, shared positive experiences of disclosing, and stressed getting help from a health care provider was the best course of action:
If you are seeking help and trying to sort it that's good. There's no reason to take your baby. I was honest with my gp. Nothing bad happened. I got better.
Treatment stigma was related to women’s concerns about seeking and adhering to professional treatment. It extended concepts of internal and external stigma described above.
Often posters emphasized the importance of professional help in recovery; women who started threads and posed questions were often reassured that they had
It is the people who are not seeking help and not being honest with themselves that are in the most danger, You are doing the right things, you are being objective, and seeking help.
Treatment was largely discussed in terms of antidepressants. Some women felt like a failure for having to take medication, which added to feelings of
I still feel guilty and worried I am causing my baby harm and being selfish if I ask for drugs - did any of you guys who have taken meds struggle with this before asking?
Replies were embedded in a dialogue of social support and most were pro-antidepressants and encouraged women to work with health care providers. These posts often challenged stigma by promoting an alternative “good mum” discourse that challenged external and internal stigma. Posts reconceptualized what a good mother is, namely, a good mother gets help and takes treatment:
And don't worry about not being a good mum, the very fact that you posted what you did and are worried about the possible effects on the baby show that you're already a very caring mum.
I feel like there's a stigma attached to taking meds for a mental illness, which doesn't exist for physical illnesses...And I don't think I'm going to do DD (darling daughter) any favours by trying to prove I can be a good mum off my medication.
Negative experiences with health care providers included disclosure and treatment experiences. This theme extended feelings of internal and external stigma and the majority of subsequent posts challenged stigma by promoting health care providers and treatment.
Very few posts outlined any negative experiences when women disclosed to health care providers (n=3). One woman who started a thread rebuked replies encouraging help-seeking as she had previous negative experiences with the social services and did not trust health care providers. Two women started threads to talk about bad events with health care providers:
My midwife said, and I quote, 'if you suffer from psychosis we could take your child away'. For someone feeling vulnerable this was really scary and I have not been able to relax with the pregnancy.
Subsequent posts condemned the midwife’s approach and said how there are good and non-judgemental healthcare providers. Replies to unhelpful health care provider experiences strongly urged women to engage with health care providers and stressed that treatment was essential for recovery.
This study increases our knowledge of the stigma women with perinatal mental illness may experience. In particular, it offers unique insights into how women are expressing different types of stigma on an online forum, online discourse that challenged this stigma, and the potential outcomes for help-seeking behavior. Women frequently expressed internal stigma and were concerned about external stigma from health care providers. Both were noteworthy barriers to help-seeking behavior and reply posts often challenged this stigma by sharing positive experiences of disclosure and treatment. Posts challenged some women's beliefs that health care providers would think of them as an unfit mother or social services would take their baby. Women were consistently encouraged to seek professional help.
Treatment stigma was often expressed as stigma about having a mental illness and having a mental illness as a mother. Some women felt they had failed at their role as a mother because they had to rely on medication to cope and feared treatment would harm their unborn child. Subsequent posts challenged this stigma promoting a different discourse that advocated good mothers seek help and take treatment. Many women who sought advice on whether they should disclose to a healthcare provider reported that they followed the advice of reply posts and sought help. There were 3 instances of negative experiences when disclosing symptoms to health care providers.
Consistent with previous studies [
Internal, external, and treatment stigma discourse was met by replies of encouragement to get help and praised acts of disclosure to health care providers. Posts often promoted a “good mother” discourse that included the ideas that a good mother discloses and gets treatment and health care providers will not think them inadequate or take their baby away. These posts challenged the distressing dissonance between the concept of a good mother, and that of a bad mother, present in some mothers’ posts and thus reconciled that a “good mother” can have perinatal mental illness.
Unlike previous research on perinatal mental health forums, there were 3 posts that shared negative experiences of disclosing to health care providers [
This is the first study of messages on a perinatal mental illness forum that explores stigma and disclosure and suggests potential concerns for users. Unfortunately, this study only considered one online forum as all other moderators either did not give consent or failed to reply to requests for consent. Future research should observe other forums to ensure the validity and generalizability of findings. Messages reported that half of women sought help as a direct consequence of using the forums. We do not know if there was an effect on the women who did not reply or those who read forums without posting. Users who read without posting are also known as lurkers and account for the majority of forum users [
This study provides further insights into the stigma women with perinatal mental illness may experience and how they communicate online. This could be used to develop targeted interventions to help women disclose to health care providers and get treatment, for example, forums could be developed to offer this support to at risk women and their subsequent disclosure could be measured against a control group. Future theoretical models could draw on this evidence and investigate if online forum use for perinatal mental illness impacts the stigma experienced by some women and if this affects disclosure to health care providers.
Forum posts often expressed internal and external stigma from health care providers and treatment stigma as major barriers to disclosure and help-seeking behavior. Forum replies challenged this stigma and provided a place to discuss stigma. Forum discourse reconstructed the idea of a good mother as compatible with perinatal mental illness, especially if the woman sought help and adhered to treatment.
The vast majority of posts encouraged women to engage with and trust in health care providers, and consequently some women sought help and engaged in treatment. This study showed that this forum has the potential to increase women's disclosure to health care providers and strengthen professional treatment uptake and adherence. However, there are possible concerns when using forums. Health care providers should exercise discernment when directing their clients to online forums.
The authors would like to thank Mumsnet for their consent to use archived posts for this research.
None declared.