Mental ill-health is a significant health issue for young people, with half of the mental disorders starting before 15 years and three-quarters by 25 years (Kessler et al., 2005). Despite this, almost half (44%) of young people with a mental health problem do not seek professional help in Australia (Lawrence et al., 2015), with stigma and negative beliefs about mental health services being major barriers (Aguirre Velasco et al., 2020).
There is evidence to suggest that listening to people with lived experience share their mental health stories has the potential to increase knowledge about mental illness and reduce stigma (Zhuang & Guidry, 2022; Kosyluk et al., 2021; Mulfinger et al., 2018). However, there is a paucity of research on how this sharing affects the people with lived experience who are telling their stories.
batyr is an Australian non-profit organisation that delivers mental health education programs for young people and families delivered by speakers who are young people with lived experience of mental ill-health. The aim of this study by Lindstrom and colleagues (2021) was to explore how the role of batyr speaker influences the wellbeing of young people (Lindstrom et al., 2021).
Sharing stories of lived experience of mental illness can reduce stigma and promote help-seeking behaviour, but what about the impact of disclosure?
Methods
A qualitative exploratory study was conducted using in-depth semi-structured interviews to explore young people’s experiences and views of sharing their story of mental ill-health. The authors used a purposeful sampling strategy, recruiting participants from batyr’s speakers’ program. A total of 18 young people participated (8 females, 8 males and 2 non-binary), aged between 18 and 33 years (mean age 25 years). The period for which participants had been speakers in the program varied from less than three months through to over two years.
The interviews were guided by three main topics: overall experience; role as a speaker in relation to wellbeing; and, talking about mental health in social circles. Interviews lasted approximately one hour and were conducted either via online video software (n=17) or face-to-face (n=1). Authors reported that data saturation was reached at ten interviews.
The interviews were audio-recorded and transcribed for analysis. Data were analysed using thematic analysis (Braun & Clarke, 2006); the first author conducted the initial analysis, with codes and preliminary analyses reviewed regularly with the co-authors.
Results
Five themes were identified by the authors:
1. Getting better at getting better
Young people reported that continually reflecting on their mental health journey and sharing their story helped them understand recovery as a process rather than a goal. They were able to reframe how they viewed their own mental health challenges through a positive lens, identifying traits such as resilience and courage, and thus reducing self-stigma.
2. Growing towards self-acceptance
Through an improved understanding of their mental health journey, young people developed a sense of self-acceptance, gained confidence and improved wellbeing. There was also a developing sense of empowerment and purpose through using their experience to help others.
3. Breaking the wall by talking about mental health
Young people felt that the program equipped them with the appropriate tools to talk about mental ill-health in a safe way. These tools included the use of safe language, resources to seek help, and how to talk about specific issues, such as suicide and trauma. There was also increased confidence and a sense of responsibility to address societal stigma of mental illness, by voicing opinions and views in conversation with other others, including addressing negative behaviours or language.
4. Increasing connectedness
Being involved in the speakers’ program fostered a sense of connectedness and solidarity between speakers with other speakers and the program. As well as common sense, young people were able to gain insight into different people’s experiences. There was also a sense of connection with the young people or students, with whom they shared their story.
5. Reaching out for support
The final theme identified by the authors of this study referred to the help-seeking process. Young people reported being more willing to seek help if they are struggling with their mental health, are aware of where to get help, and encourage others to seek support. The authors also highlighted that male participants reported how before becoming a speaker they were ashamed of their mental illness and had strong self-stigma, influenced by societal views of masculinity. These male participants now enjoyed being able to encourage other young males to be vulnerable and reach out for support.
The findings suggest a range of positive effects for young people sharing their lived experience of mental health as part of the batyr Being Herd program.
Conclusions
The authors concluded that the findings suggest that programs that allow young people to reflect on and share their lived experience stories of mental ill-health from a positive perspective can decrease stigma, and increase their ability and confidence to talk to others about mental health.
Lived experience disclosure among young people may reduce the stigma, reinforce help-seeking behaviours and increase self-confidence.
Strengths and limitations
The use of an exploratory qualitative design was appropriate given the paucity of research on the experience of young people who share their lived experience of mental ill-health. A strength of the study was the relative diversity of participants in terms of age, gender, nationality, and how long they had been in the speakers’ program. The study provides new and important knowledge about the impact on young people of speaking about their lived experience of mental ill-health in the batyr program. This is particularly needed research, given that many mental health organisations provide opportunities for people with lived experience of mental illness to share their stories with the community.
Although there were no limitations identified in the article by the authors, there were some limitations to the study. It would have been helpful to have a little more information about the participants, including how many times they had spoken and their socio-economic status. Also, as there is no discussion about the extent to which this sample is representative of all speakers in the program or young people in the wider community, the potential generalisability of the study’s findings was not explored.
It was difficult to assess the rigour of the research methods used, as the article does not address or provide detail on some items recommended in the Consolidated Criteria for Reporting Qualitative Research (Tong et al., 2007). For example, although one author maintained a personal journal about the research process, they did not describe what data was recorded or report how, if at all, this data was used in the analysis. The authors did not provide any detail about how data saturation was assessed or why an additional eight interviews were conducted and analysed after saturation was reported to have been reached. The authors also did not disclose that the first author, who conducted the interviews, is also a speaker in the same program and how this may have influenced the study, particularly data collection and analysis.
The study provides new and important knowledge about the impact on young people of speaking about their lived experience of mental ill-health.
Implications for practice
This study suggests that young people sharing their lived experience of mental ill-health find it a positive experience, reinforcing their own help-seeking and providing a sense of connection and purpose. While the findings are promising there is a need for further research, including quantitative and longitudinal studies, to expand our understanding of the impact of this important and growing role in the mental health sector. It would also be interesting to know if there are different experiences for speakers when they deliver their story through a live online platform.
One of the key areas for further research, that was unexplored in the current study, is whether young people experience any harm or negative experiences in their role, either short-term or longer term. Previous research on adults has found that speakers experience both positive and negative effects, with the latter including feeling vulnerable or fearful of stigma (Read & Rickwood, 2009). Speakers may also feel pressure to shape their narratives to focus on the positive elements while omitting more negative elements of their mental health journey, thus alienating speakers from their own lived experience and identities (Kaiser et al., 2020). Given that recovery or remission from mental illness is often non-linear, it’s critical that programs provide ongoing opportunities for speakers to reflect on the impact that their role is having on their mental health, and provide appropriate support and flexibility to allow speakers to take a step back from the role when needed.
Psychoeducation programmes with experts by experience should reflect on the impact of disclosure on their mental health and provide adequate support.
Statement of interest
There are no conflicts of interest for the author in writing this article.
Links
Primary paper
Lindstrom, G., Sofija, E., & Riley, T. (2021). “Getting better at getting better”: How Sharing Mental Health Stories Can Shape Young People’s Wellbeing. Community Mental Health Journal, 57(8), 1604–1613. https://doi.org/10.1007/s10597-021-00786-w
Other references
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Zhuang, J. & Guidry, A. (2022) Does Storytelling Reduce Stigma? A Meta-Analytic View of Narrative Persuasion on Stigma Reduction, Basic and Applied Social Psychology,44:1, 25-37, DOI: 10.1080/01973533.2022.2039657
Photo credits
- Photo by Austin Distel on Unsplash
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Marianne.. Really interesting stuff. I developed an appriach working with 25000 young people called voice as value which i think you would find mirrors your research. Some interesting reflection from this on the e ‘speaker bit and findings on negative/ positive response. Love to share.