Community Participation Through the Lens of Individuals With Mental Illness: A Photovoice Study

The Temple University Community Participation Measure (TUCPM) is a non-occupational-therapy (OT) specific outcome measure, mandated for state-funded community mental health services in a state where OT practitioners are not recognized as qualified mental health professionals (QMHPs). TUCPM measures whether individuals with mental illness engage in activity domains such as housing, employment, civic life, romance/ intimacy, and parenting. A group of individuals with mental illness reported that many activities in TUCPM were not common experience to them. The purpose of this study was to explore meanings of community participation from the perspective of individuals living with mental illness, hoping that findings of the study would inform any needed improvement when measuring community participation for this client population.

This was a qualitative study using the photovoice method, a community-based participatory research (CBPR) approach that community members and researchers equitably contribute to decision making in the research process. Photovoice involves giving cameras to community people to take photos about issues in the community. This study was conducted at a peer center (a consumer-run, non-profit community center for individuals with mental illness). Eight participants were recruited based on the following criteria: age between 18 and 65 years, a member of the peer center, capable to operate a point-and-shoot digital camera after a brief instruction, and capable to participate in small group discussions.

The study participants completed three photo assignments, each followed by a photo discussion meeting. The SHOWED discussion guide was used to facilitate group discussions—

1. What do we SEE here?

2. What is HAPPENING?

3. How does the story relate to OUR lives and how do we feel about it?

4. WHY has the problem/asset existed?

5. How can we become EMPOWERED with our new understanding?

6. What can we DO about these problems/ assets in our lives?

The study participants engaged in deeper discussion as the meetings progressed. Methods of grounded theory were used to analyze transcribed verbatim of group meetings. Transcripts were analyzed line-by-line (open coding) to identify categories of common issues and themes. Axial and selective coding methods were used to yield a preliminary theoretical structure that delineates community participation experienced by individuals with mental illness and the interrelations of related issues and themes. A computer program, NVivo 10, was used to assist in data analysis.

Preliminary results suggested that the study participants enjoyed participating in activities such as going to the fair, which did not involve intensive interactions with people who may not understand mental illness; and coming to the peer center where they felt comfortable to interact with a small group of people who shared similar illness experience. The study participants commonly experienced stigma toward people with mental illness, and may not find the need to participate in the community the same way as others do.

CONCLUSION: The photovoice method is a powerful tool to gain understanding of community participation from the perspective of individuals with mental illness. As the research team continue to finalize a theoretical description of the research data, we find it crucial to incorporate the client perspective when measuring community participation for individuals with mental illness. The impact of this study is that it provides qualitative research evidence about the need of client-centered outcome measures for mental health services, as well as showcases the distinct value of occupational therapy in mental health while OT practitioners in the state continue to advocate for the QMHP status.

References

Brown, C., Stoffel, V. C., & Munoz, J. P. (Eds.). (2019). Occupational therapy in mental health: A vision for participation (2nd ed.). Philadelphia: F. A. Davis.

Lopez, E. D. S., Robinson, N., & Eng, E. (2008). Photovoice as a CBPR method: A case study with African American breast cancer survivors in rural eastern North Carolina. In B. A. Israel, E. Eng, A. J. Schultz, & E. A. Parker. (Eds.), Methods for community-based participatory research for health (2nd ed.), pp. 489 – 516. San Francisco: Jossey-Bass.

Salzer, M. S., & Baron, R. C. (2016). Well together- A blueprint for community inclusion: Fundamental concepts, theoretical frameworks, and evidence. Melbourne, Australia: Wellways Australia Limited.

Strauss, A. L., & Corbin, J. M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage Publications.