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Volume 50 Number 1
Self Help Interest Group
Edited by Greg Townley and Alicia Lucksted
Seeking interested individuals for Self-help Interest Group leadership position: Our second term as interest group co-chairs ends in Summer 2017, and we are hoping to identify individuals interested in taking over this leadership position. We will happily provide technical assistance to make the transition as smooth as possible. Please email Alicia (Aluckste@psych.umaryland.edu) and Greg (firstname.lastname@example.org) to discuss further!
Pilot test of the Community Integration Specialists for Recovery Outcomes (CISRO) Project
Community integration refers to the notion that individuals with disabilities have a fundamental right to live, work, engage with others, and enjoy recreational activities in the same manner as peers without disabilities (Wong & Solomon, 2002). In the 21st century, the ideal of individuals with disabilities enjoying equal opportunities to live and participate in their communities remains an unrealized goal. Unaffordable or inaccessible housing, limited opportunities for employment, lack of transportation, and pervasive mental health stigma severely limit the community involvement of individuals with mental health disabilities (Townley, 2015). Community integration research has emerged as a high priority among mental health advocates, policy makers, and researchers working to remove barriers and uncover ways to encourage inclusion and participation of individuals with psychiatric disabilities (Davidson, 2005; Ware, Hopper, Tugenberg, Dickey, & Fisher, 2008; Yanos, 2007).
To assist with these efforts, a team of researchers at Portland State University recently pilot-tested the Community Integration Specialists for Recovery Outcomes (CISRO) Project, a peer-facilitated program developed by the second author of this report. The long-term objective of CISRO is to assess the efficacy and capability of Peer Support Specialists to foster and increase both the quality and quantity of community-based activities and available natural supports for individuals with psychiatric disabilities. Peer Support Specialists are individuals with lived experience of mental health challenges who work with other mental health peers on recovery and wellness goals (Davidson, Bellamy, Guy, & Miller, 2012). There has been exponential growth in the employment of Peer Support Specialists over the past decade, with estimates of over ten thousand peer support staff in the United States alone (Repper & Carter, 2011). Research evaluating peer support programs highlights its effectiveness in reducing hospital admissions, engaging clients in treatment, increasing community tenure, and decreasing symptom distress (Davidson et al., 2012; Repper & Carter, 2011).
Less is known about the role of Peer Support Specialists in programs aimed at increasing community-based activities and natural supports. The CISRO Project aims to address this knowledge gap, and the results of a pilot study evaluating this program will be the focus of the remainder of the report. In the next section, we will present data from three focus groups asking mental health staff and consumers about their attitudes and experiences working with Peer Support Specialists. In the following section, we will present descriptive information and results from the CISRO pilot study. We will then conclude with lessons learned and suggestions for similar peer-delivered interventions aimed at facilitating community integration of individuals with psychiatric disabilities.
Mental health consumers. We conducted two focus groups with mental health consumers (n = 18 total) to assess perceived barriers to community integration, types of activities individuals would like to participate in more frequently, and support that individuals would appreciate receiving from a Peer Support Specialist. Individuals noted wishing to engage more frequently in a variety of activities, including volunteer work, sports, employment, dancing, and going to movies. Participants discussed numerous barriers to community engagement, including symptom distress, concerns about physical safety, societal stigma of mental illness, fears of socializing with others, and transportation challenges. They also discussed the value of working with a Peer Support Specialist to address these barriers. Specifically, participants reported preferring to do activities and feeling safer with other individuals who also experience mental health challenges. They also reported appreciating the higher level of transparency available when working with peers compared to traditional staff, as well as the general support and investment provided: “Just basic availability—time, commitment. If there was a group or person that shared the same condition or experiences or same history, that would be very helpful.”
Mental health staff. We conducted one focus group with mental health staff (n = 6) to assess attitudes about the value of Peer Support Specialists working within mental health service organizations. Staff participants noted several positive aspects of having peer workers within provider agencies. These included building trust with consumers based on shared experience; being able to reframe client issues from the perspective of individuals with mental health challenges; assisting consumers in connecting to community, family members, and friends; and meeting clients where they are at: “They meet them in their homes and the community where they live their life. Peers operate in the gray area between clinician and client, which can be excellent in filling the holes in a multi-disciplinary team.” Despite the overwhelmingly positive attitudes that staff participants reported about Peer Support Specialists, they did note some challenges, including more frequent staff turnover, issues with documentation and billing, mental health symptom impairment, and tensions between clinicians and clients: “It can become too much like advice-giving. The peer may think that because they have lived experience, they’re an expert on all the medication and treatment options. And then they tell the peer, and the peer doesn’t want to do what the clinician has advised. It can become a power struggle.”
Summary of pilot project findings
A total of 12 mental health consumers worked with two Peer Support Specialists trained in the CISRO model (referred to herein as Community Integration Specialists, or CIS) over a period of two months. Participants were recruited from a mental health service agency in the Greater Portland Metropolitan Area. Inclusion criteria included being age 18 or above and having a diagnosed serious mental illness (e.g., schizophrenia and bipolar disorder). After completing baseline measures about physical and mental health interferences, mental health recovery, satisfaction with social roles, ability to perform social roles, social isolation, and community integration, participants worked with CIS to identify community integration goals (e.g., completing job applications, researching housing options, and volunteering at the zoo). The CIS then worked on formulating suggestions and resources for the peer, which were discussed at follow-up meetings. CIS also offered to provide any additional supports requested by the peer (e.g., transportation, joining them for the activity, providing follow-up calls or texts, etc.). After participants attempted or completed initial goals, additional community integration goals were discussed and undertaken. Peer participants who worked with CIS for at least two months were then invited to complete follow-up measures of the primary study variables.
The average age of participants was 44; half identified as men and half as women; nine were White, one was Asian, one was Latino, and one was multi-racial; 10 lived alone, two with friends, roommates, or other unrelated adults; 10 reported not working at the time of the study, while two were working part time; and, finally, nine participants reported being single, with one married, one divorced, and one declining to answer. A total of six participants (50%) completed both rounds of data collection, and we conducted paired t-test analyses to determine significant differences between baseline and follow-up scores. There was a significant difference in participant satisfaction with social roles scores at baseline (M = 2.44, SD = 1.04) and follow-up (M = 3.26, SD = .87), t(5) = -4.75, p < .01. And while we noted positive changes in physical and mental health interference, mental health recovery, ability to perform social roles, social isolation, and community integration, none of these changes were statistically significantly, likely due to our very limited power to detect significant effects.
Lessons learned and suggestions
Interviews with Community Integration Specialists (CIS) and other project staff help to inform lessons learned and suggestions for similar projects. CIS reported having no major challenges communicating to peers what the CISRO Project entailed. However, they felt that the monetary incentive for completing baseline measures was often the primary motivator for enrollment. CIS reported that some peers had a difficult time understanding that they needed to be actively engaged in the intervention for at least two months, which helps to explain why half of the participants dropped out of the program. CIS also reported perceiving a low level of embeddedness within the partnering mental health provider agency. They noted only one instance of a case manager directly encouraging a client to speak with the CIS about the project, and some staff expressed a lack of knowledge about the project entirely. One CIS stated that having a longer timeline to work with peers (a minimum of six months) would have made her work with peer participants more successful. She also noted that the participants involved in the project were not necessarily those who needed the highest levels of social support. More could be done to reach out to individuals who may be more isolated and who may not have felt comfortable inquiring about and enrolling in the CISRO Project.
Given the higher-than-expected number of Community Integration Specialists who were trained in the CISRO model but then decided to withdraw from the project (n = 2), it is advisable to train more CIS than are needed. It is also important to work more intentionally to encourage buy-in from mental health agency partners, including hosting more frequent meetings with front-line staff at the beginning, and throughout the project. Further, framing the project more as a service-enhancing program rather than a research program may increase agency support as well as CIS and peer involvement. As peer-delivered services continue to be implemented throughout mental health service organizations both nationally and internationally, it is important to identify unique roles and niches for Peer Support Specialists that complement traditional service approaches and address the most pervasive barriers to recovery, quality of life, and community inclusion of individuals who experience persistent mental health challenges.
Acknowledgements: This work was funded by the Oregon Health Authority, as a Discretionary Funding Project, using dollars that were part of Oregon’s Mental Health Block Grant from the Centers for Medicare and Medicaid Services (CMS). The authors also wish to acknowledge Arlene Sherrett, Nona Clarke, Kimberly Wilcox, and Marcia Hille for their invaluable contributions.
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Davidson, L., Bellamy, C., Guy, K., & Miller, R. (2012). Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry, 11(2), 123-128.
Repper, J., & Carter, T. (2011). A review of the literature on peer support in mental health services. Journal of Mental Health, 20(4), 392-411.
Townley, G. (2015). “It helps you not feel so bad—feel like you again”: The importance of community for individuals with psychiatric disabilities. Journal of Psychosocial Rehabilitation and Mental Health, 2(2), 113-124.
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