Unpacking Service User Involvement in Mental Health Research

Unpacking Service User Involvement in Mental Health Research


Mental health services users have been advocating for greater involvement in research that concerns them (Sweeney, 2013), based on the adage of the Disabled People’s Movement: “nothing about us, without us”. The need for service user involvement is clear: those with lived experience can give us insight into the subjective experience of distress, diagnosis, use of services, battles with discrimination, coping mechanisms, and what ‘recovery’ looks like (Faulkner, 2017). Research from the perspective of service users has the potential to, at the very least supplement, and at most transform our understanding of mental health.

However, service-user involvement is not without its challenges. Carr (2019) discusses how the ‘emotional labour’ associated with service users’ exploration of lived experience in the research space can cause mental health distress in itself. Additional challenges resulting from the hierarchical structure and bureaucratic norms of academia severely inhibit the successful integration of lived experience into mental health research (Pollard & Evans, 2013). Finally, Black and minority ethnic service user experiences within largely white institutions afford an added layer of complexity to the emotional implications of service user research (Kalathil, 2013).

This study aimed to investigate the emotional implications and structural challenges of bringing lived experience into mental health research.

Those with lived experience can give us insight into the subjective experience of distress, diagnosis, use of services, battles with discrimination, coping mechanisms, and what ‘recovery’ looks like.

Those with lived experience can give insight into the subjective experience of distress, diagnosis, use of services, battles with discrimination, coping mechanisms, and what ‘recovery’ looks like.

Method

This was a qualitative interview study based on a pre-planned topic guide, exploring benefits and challenges of using lived experience in research, identity, workplace dynamics, and coping strategies.

The authors recruited a purposive sample of mainstream researchers managing service user projects, service user participants and consultants, and those with dual identities. There were ten participants in total, eight of whom were white and four of whom were male.

The authors used thematic analysis to analyse the data. Due to the importance of maintaining anonymity within the community, quotes were not attributed to specific demographics or individuals.

Results

Thematic analysis of the gathered data revealed five themes, explored below.

Negotiating identity

  • A number of participants expressed a sense of ‘fit’ upon discovering service user research. Others expressed mixed feelings regarding their dual identities, owing to questions of their credibility within the academic space due to their service user identity, and exclusion amongst service users for being too academic.
  • From the perspective of minority ethnic participants, there was an emphasis on the importance of understanding the complexity of intersectional experiences, both in the research and service user spaces.

Emotional work: using lived experience

  • Most participants agreed that there was an expectation of some emotional distress associated with bringing their lived experience to the workplace.
  • Mainstream researchers highlighted having to manage the expectations of young service user researchers who were frustrated at the work not being what they had hoped it would be.

Emotional work: embodiment and alienation

  • Participants described the emotional burden of having to conceal emotions associated with discussing their experiences in order to avoid questions of their capability. Some used the term ‘performing monkey’ to illustrate what was expected of them in the academic space: to be able to tap into their lived experience when needed, but also to be able to swap their ‘service user’ hat for their ‘researcher’ hat on a whim.
  • Participants from minority ethnic communities also commented on being ‘othered’ in predominantly white organisations. They discussed feelings of being included to meet diversity quotas, but not being offered a safe space to express their views or seek support.

Working environment: productivity and bureaucracy

  • The academic environment was highlighted as a cause of distress in itself, largely due to a lack of understanding of the emotional needs associated with service user research. Participants discussed how individual service users had to advocate for their own needs rather than support being provided as a matter of the course by the institution.

Strategies for managing emotional work

  • The greatest need highlighted was that of a support system outside of the hierarchy of the organisation, where service users could openly discuss emotional distress and the demands of the work without judgment.
  • Participants also discussed more detailed strategies for managing the emotions associated with their work:
    • Personal strategies: included keeping a journal, talking to family and friends, and engaging in social media groups
    • Collective strategies: Participants talked about the value of peer support or mentoring within the workplace (having ‘someone who gets it’)
    • Workplace strategies: Most notably, participants highlighted the need for a dedicated system outside of the managerial hierarchy where they could discuss the issues of lived experience and workplace dynamics in an open and transparent way. Participants also stated that service users and people of colour in senior positions in the institutions were seen as valuable, and that those in power speaking out against exclusion and discrimination was welcomed
    • Systemic strategies: Participants discussed the need for cultural change within organisations, raising awareness of service user experiences and needs, but also of issues of race and white privilege.
Service user researchers emphasised a need for better support networks and consideration of intersectional identities within the academic space

Service user researchers emphasised a need for better support networks and consideration of intersectional identities within the academic space.

Conclusions

This study explores the emotional labour associated with bringing lived experience into mental health research, the benefits and challenges of the dual identity of researcher and service user, and the structural shortcomings of the academic space. The authors conclude that greater understanding of the service user experience needs to be cultivated within academia, and structural changes to support co-produced research need to be implemented. Additionally, novel considerations of an intersectional perspective highlight the need for transparent conversations about race and white privilege in research.

Cultivating a culture of understanding and inclusion within academia is vital to mitigate distress and facilitate service user research

Cultivating a culture of understanding and inclusion within academia is vital to mitigate distress and facilitate service user research.

Strengths and limitations

Strengths

In an approach that is relatively novel in service user research, this study considers an intersectional perspective. Studies have previously included members of ethnic minority communities in a tokenistic manner rather than as co-producers (Kalathil, 2013), highlighting a trend that neglects the voices of people of colour. This research sets out to challenge that, and to include diverse perspectives in the conversation.

Findings also draw attention to important structural and cultural changes that are needed to improve accessibility in academia.

Limitations

Quotes are not attributed to any demographics in order to maintain anonymity. The experiences of researchers, service user participants, and those with dual identities, while overlapping, vary enough to have different implications for practice.

Despite intending to explore the experience of ethnic minorities, the majority of participants (8 out of 10) were white. Non-white participants only accounted for South Asian perspectives, neglecting Black and other ethnic minority experiences. It should be noted that this was most likely due to the makeup of service user involvement (Kalathil, 2013), and can be taken as a critique of the field as well as of this study. However, while South Asian participants can certainly speak on racism, the experiences of ethnic minorities are not homogeneous, and diversity of perspective is lacking. This calls into question the generalisability of the findings and whether the authors achieved their goal of examining an intersectional perspective.

Finally, despite the subject matter of the paper, it is not clear if participants were offered pastoral support during the interview process. This is an important consideration in service user research, particularly as the topics under discussion can be distressing.

Quotes are not attributed to any demographics in order to maintain anonymity. The experiences of researchers, service user participants, and those with dual identities, while overlapping, vary enough to have different implications for practice.Quotes are not attributed to any demographics in order to maintain anonymity. The experiences of researchers, service user participants, and those with dual identities, while overlapping, vary enough to have different implications for practice.

Quotes are not attributed to any demographics in order to maintain anonymity. The experiences of researchers, service user participants, and those with dual identities, while overlapping, vary enough to have different implications for practice.

Implications for practice

For service users, the struggle of navigating the bureaucracy of academia was highlighted as being just as emotionally taxing as bringing lived experience into their work. This has implications for the way we approach research at an institutional level, calling for more flexible working practices, and a shift in our approach to service user research.

Participants also emphasised a lack of understanding about the complexities of their dual identities, and a subsequent lack of pastoral support in the workplace. Going forward, we need to take steps to foster greater understanding throughout academic institutions to ensure that adequate support is provided as a matter of course. This prompts considerations about service user-facilitated staff training, and the need for more service user researchers in the hierarchy of academia.

Finally, this study found that being ‘othered’ as a result of being non-white in a majority white organisation is at least as distressing as sharing lived experience during the research process, if not more so. This has implications for the hierarchical makeup of our research institutions and calls on us to tackle conversations of race and white privilege in an honest and transparent manner.

Change is necessary. Perspectives within research need to shift to re-evaluate working practices, and diversify the academic hierarchy

Change is necessary. Perspectives within research need to shift to re-evaluate working practices, and diversify the academic workforce.

Statement of interest

None.

Links

Primary paper

Faulkner, A., & Thompson, R. (2021). Uncovering the emotional labour of involvement and co-production in mental health research. Disability & Society, 1-24.

Other references

Carr, S. 2019. “I Am Not Your Nutter’: A Personal Reflection on Commodification and Comradeship in Service User and Survivor Research Disability and Society.”  Disability and Society 34(7-8): 1140–1153.

Faulkner, A. (2017). Survivor research and Mad Studies: the role and value of experiential knowledge in mental health research. Disability & Society, 32(4), 500-520.

Kalathil, J. 2013. “Hard to Reach”? Racialised groups and mental health service user involvement. Chapter Nine in Staddon, P. Mental health service users in research. pp. 121–134.

Pollard and Evans. 2013. Theorising service user involvement from a researcher perspective. Chapter Four in Staddon, P. (ed) Mental Health Service Users in Research, Bristol: Policy Press.

Sweeney, A. 2013. Sociology and survivor research: an introduction. Chapter One in: Staddon, P. (Ed.) Mental Health Service Users in Research. Bristol: Policy Press.

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