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Bringing psychiatric consumers into the research enterprise: a
report from VancouverSimon DavisSimon Davis
Vancouver Coastal Health and U.B.C. School of Vancouver Coastal Health and U.B.C. School of Social Work. Social Work. [email protected]@vch.ca
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Regina CaseyRegina CaseyVancouver Coastal Health and U.B.C. Vancouver Coastal Health and U.B.C.
Rehabilitation Sciences. Rehabilitation Sciences. [email protected]@gmail.com
Who are we talking about here? ““Psychiatric consumers” for the purposes of this Psychiatric consumers” for the purposes of this
presentation are persons diagnosed with a major presentation are persons diagnosed with a major mental illness such as schizophrenia or bipolar mental illness such as schizophrenia or bipolar disorder, and who consequently experience significant disorder, and who consequently experience significant functional impairment.functional impairment.
Historically, psychiatry has regarded such persons as Historically, psychiatry has regarded such persons as largely unemployable (Davis, 2006).largely unemployable (Davis, 2006).
However, a 2008 survey of clients of the Midtown However, a 2008 survey of clients of the Midtown Mental Health Team in Vancouver (n = 482) found Mental Health Team in Vancouver (n = 482) found that 41% were participating in vocational or that 41% were participating in vocational or educational opportunities (see next slide).educational opportunities (see next slide).
Results of survey of Midtown Team: 23% of Adult Program clients at M-MHT were 23% of Adult Program clients at M-MHT were
employed. 4% of these positions were defined as employed. 4% of these positions were defined as Consumer contract positions. (e.g.: Peer Support Consumer contract positions. (e.g.: Peer Support Work, Computer Tutor, etc.)Work, Computer Tutor, etc.)
14% of Adult Program clients were volunteering14% of Adult Program clients were volunteering 4 % of Adult Program clients were attending 4 % of Adult Program clients were attending
training or education programstraining or education programs 41% of Adult Program clients were participating 41% of Adult Program clients were participating
in vocational/educational activitiesin vocational/educational activities
Consumers as researchers Meaningful employment;Meaningful employment; Capacity building: “activities which strengthen the knowledge, Capacity building: “activities which strengthen the knowledge,
abilities, skills and behaviour of individuals and improve abilities, skills and behaviour of individuals and improve institutional structures and processes” (World Customs institutional structures and processes” (World Customs Organization, Organization, http://www.wcoomd.org/home.htmhttp://www.wcoomd.org/home.htm););
Contribution to the knowledge base;Contribution to the knowledge base; ““Reclaiming ones own storyReclaiming ones own story” – “many feel that ” – “many feel that
reinterpretation of their experiences in the unfamiliar language reinterpretation of their experiences in the unfamiliar language of medical terminology does not describe adequately the of medical terminology does not describe adequately the personal reality of that experience” (Kirby Report, p. 231).personal reality of that experience” (Kirby Report, p. 231).
The knowledge resource base (Trainor et al, 2004)
Medical/clinicalMedical/clinical Social ScienceSocial Science ExperientialExperiential Traditional knowledgeTraditional knowledge
In psychiatry the “evidence base” has In psychiatry the “evidence base” has historically been dominated by historically been dominated by practitioner/academic-generated knowledge.practitioner/academic-generated knowledge.
Continued….
The Kirby Report (The Kirby Report (Out of the Shadows at LastOut of the Shadows at Last) ) notes that: notes that: - “- “People living with mental illness, and their People living with mental illness, and their families, like many marginalized groups, have families, like many marginalized groups, have legitimate grounds for being suspicious of many legitimate grounds for being suspicious of many traditional research methods, and for looking traditional research methods, and for looking with favour on non-traditional methodologies with favour on non-traditional methodologies such as participatory action research and such as participatory action research and underutilized ones such as qualitative methods”underutilized ones such as qualitative methods” (p. 244).(p. 244).
Action research Action researchAction research is “articulated by non-academic is “articulated by non-academic
researchers, and addresses issues that a researchers, and addresses issues that a community, practitioner, or organization actually community, practitioner, or organization actually experiences and wants to resolve” (Boutilier et experiences and wants to resolve” (Boutilier et al, 1997).al, 1997).
In pIn participatory action researcharticipatory action research (PAR) the (PAR) the assumption is that assumption is that persons with lived experiencespersons with lived experiences are the experts, and that knowledge is produced are the experts, and that knowledge is produced through the active engagement of all participants through the active engagement of all participants (Schneider, in press). (Schneider, in press).
Continued…..
Historically psychiatric service consumers Historically psychiatric service consumers have been included as have been included as subjectssubjects, but not , but not designersdesigners of research. In the PAR model of research. In the PAR model they (hopefully) identify the questions and they (hopefully) identify the questions and carry out the researchcarry out the research
PAR is explicitly about PAR is explicitly about praxispraxis, and aims to , and aims to empower or improve the lives of, in this empower or improve the lives of, in this case, psychiatric service consumers.case, psychiatric service consumers.
Avoiding tokenism: How much participation?
Consumer participation in research exists on a Consumer participation in research exists on a continuum (Schneider, in press):continuum (Schneider, in press):
AdvisoryAdvisory (sits on committee); (sits on committee); ConsultationConsultation (asked for input, but project designed by (asked for input, but project designed by
others);others); CollaborationCollaboration (participation in all aspects, i.e. problem (participation in all aspects, i.e. problem
identification, design, analysis and dissemination);identification, design, analysis and dissemination); Control Control (for example, a research institute chaired by a (for example, a research institute chaired by a
consumer). A possible model for this would be the consumer). A possible model for this would be the National Empowerment Center in the U.S. (see National Empowerment Center in the U.S. (see www.power2u.orgwww.power2u.org))
Consumer research: where is it happening?
Psychiatric consumers have for some time written Psychiatric consumers have for some time written and spoken about their experiences.and spoken about their experiences.
However, these personal accounts may be However, these personal accounts may be devalued because:devalued because:- they are anecdotal and therefore “unscientific;”- they are anecdotal and therefore “unscientific;”- consumers “lack insight,” particularly when - consumers “lack insight,” particularly when offering a critique of the status quo;offering a critique of the status quo;- consumers lack money, resources and political - consumers lack money, resources and political clout.clout.
Changing times? Participatory Action Research with psychiatric Participatory Action Research with psychiatric
consumers is happening in Canada, e.g.:consumers is happening in Canada, e.g.:
Professor Geoffrey Nelson at W. Laurier University:Professor Geoffrey Nelson at W. Laurier University:
http://http://info.wlu.ca/~wwwpsych/gnelson/mainset.htminfo.wlu.ca/~wwwpsych/gnelson/mainset.htm
Professor Barbara Schneider at the University ofProfessor Barbara Schneider at the University of
Calgary: Calgary: http://www.ucalgary.ca/%7Ebaschnei/http://www.ucalgary.ca/%7Ebaschnei/
The Vancouver Project
Seed money from a grant to VCH in 2006 Seed money from a grant to VCH in 2006 was dedicated to support a project was dedicated to support a project that would that would investigate research questions of interest and investigate research questions of interest and importance to mental health consumersimportance to mental health consumers..
A consumer-researcher (Richard Ingram) A consumer-researcher (Richard Ingram) was contracted to write a proposal describing was contracted to write a proposal describing a consumer-driven research institute, and a a consumer-driven research institute, and a small steering committee was formed to small steering committee was formed to support this. support this.
Vision
At early meetings of the CONKER steering At early meetings of the CONKER steering committee values for the project were identified as committee values for the project were identified as follows:follows:- That research activities be consumer-driven;- That research activities be consumer-driven;- That there be a collaborative approach between - That there be a collaborative approach between consumers and professionals;consumers and professionals;- That the work environment be mutually - That the work environment be mutually supportive and non-competitive;supportive and non-competitive;- That there be real and meaningful participation - That there be real and meaningful participation for consumers; for consumers;
Continued….
- That there be genuine opportunity for consumers to - That there be genuine opportunity for consumers to acquire skills in grant-writing and conducting acquire skills in grant-writing and conducting research.research.- That results of research be meaningful for - That results of research be meaningful for consumers, consistent with the tenets of consumers, consistent with the tenets of action action researchresearch wherein research projects are wherein research projects are given backgiven back for the betterment of the subject community;for the betterment of the subject community;- That there be genuine opportunity for consumers to - That there be genuine opportunity for consumers to acquire skills in grant-writing and conducting acquire skills in grant-writing and conducting research.research.
Goals
Goals identified for this project include the Goals identified for this project include the following:following:- To validate the knowledge held by consumers;- To validate the knowledge held by consumers;- To enhance the research skills of consumers;- To enhance the research skills of consumers;- To help consumers obtain a voice in the delivery, - To help consumers obtain a voice in the delivery, planning and evaluation of mental health services;planning and evaluation of mental health services;- To positively influence service delivery and - To positively influence service delivery and policy development;policy development;- To be culturally inclusive.- To be culturally inclusive.
Personnel A steering committee (which ideally would A steering committee (which ideally would
evolve into an institute with a director with evolve into an institute with a director with research expertise who also identifies as a research expertise who also identifies as a consumer).consumer).
In lieu of this, a VCH staff member chairs the In lieu of this, a VCH staff member chairs the committee, and serves as a research mentor.committee, and serves as a research mentor.
Currently the committee has six members, three Currently the committee has six members, three who identify as consumers, two VCMHS staff who identify as consumers, two VCMHS staff and one UBC faculty member from Rehab and one UBC faculty member from Rehab Sciences.Sciences.
Questions identified by consumers- Examining the role medication plays in the lives of - Examining the role medication plays in the lives of consumers;consumers;- Looking at what - Looking at what recoveryrecovery means to consumers; means to consumers;- Looking at mental health system access – what is - Looking at mental health system access – what is working and what isn’t;working and what isn’t;- Metabolic syndrome (a health condition linked to - Metabolic syndrome (a health condition linked to psychotropic medications);psychotropic medications);- Assessing staff attitudes toward the recovery vision;- Assessing staff attitudes toward the recovery vision;- Looking at ways to better transition consumers into - Looking at ways to better transition consumers into employment.employment.
Strengths of the Vancouver Project Management commitment to recovery-Management commitment to recovery-
oriented services and capacity-building.oriented services and capacity-building. An existing structure, dedicated staff and An existing structure, dedicated staff and
policies concerning hiring consumers (peer policies concerning hiring consumers (peer support workers and other consumer-support workers and other consumer-contractors).contractors).
An understanding of the need to provide An understanding of the need to provide accommodations.accommodations.
Being situated in the practice setting.Being situated in the practice setting.
Challenges
Money Will need successful grant applications or other Will need successful grant applications or other
donations to sustain project.donations to sustain project. But….research conducted by the Vancouver But….research conducted by the Vancouver
Project, consistent with the vision of PAR, will in Project, consistent with the vision of PAR, will in many cases be smaller scale and qualitative – many cases be smaller scale and qualitative – which may be less attractive to granting bodies.which may be less attractive to granting bodies.
““Funding for grants is highly competitive….the Funding for grants is highly competitive….the funding source for research often limits idea funding source for research often limits idea generation in ways that is not conducive to generation in ways that is not conducive to collaboration” (Morrow, 2008).collaboration” (Morrow, 2008).
Human Resources Vancouver project not fully consumer-Vancouver project not fully consumer-
controlled, and work by practitioner-members controlled, and work by practitioner-members being done “off the side of the desk.” A being done “off the side of the desk.” A dedicated dedicated nonnon-consumer position would -consumer position would undermine purpose of project.undermine purpose of project.
Consumers may need accommodations to Consumers may need accommodations to address their own health needs. address their own health needs.
Ability to hire more CRers limited by ability to Ability to hire more CRers limited by ability to provide adequate mentoring and supervision.provide adequate mentoring and supervision.
Continued……
Concerning peer researchers, what Concerning peer researchers, what credentials should be required, and how credentials should be required, and how much/what model of training provided?much/what model of training provided?
Given that research is “lumpy” (periods of Given that research is “lumpy” (periods of greater and lesser activity, projects taking greater and lesser activity, projects taking longer due to uncontrollable factors), how is longer due to uncontrollable factors), how is this reconciled with consumer contracts this reconciled with consumer contracts which may be “determinate” in nature?which may be “determinate” in nature?
Vision: resist co-option
Need to ensure that consumers maintain a Need to ensure that consumers maintain a role in identifying the questions, in carrying role in identifying the questions, in carrying out the research, and in determining how the out the research, and in determining how the results will be used, vs. unilateral, self-results will be used, vs. unilateral, self-serving decisions by practitioners.serving decisions by practitioners.
WWhat form will the final products of research take? How and where will the information be disseminated? Who will write what? What will the results be used for?
References Boutilier, M. et al. (1997). Community action and reflective Boutilier, M. et al. (1997). Community action and reflective
practice in health promotion research. practice in health promotion research. Health Promotion Health Promotion International, 12International, 12(1), 69-78.(1), 69-78.
Davis, S. (2006). Davis, S. (2006). Community Mental Health in Canada.Community Mental Health in Canada. Vancouver: UBC Press.Vancouver: UBC Press.
Morrow, M. (2008). Morrow, M. (2008). Research for Change: Building Research for Change: Building Community-Based Research Capacity. Final Report.Community-Based Research Capacity. Final Report. Simon Simon Fraser University Faculty of Health Sciences, Burnaby, B.C.Fraser University Faculty of Health Sciences, Burnaby, B.C.
Schneider, B. (In press). Schneider, B. (In press). Hearing [our] VoicesHearing [our] Voices. Toronto: . Toronto: University of Toronto Press.University of Toronto Press.
Trainor, J. et al. (2004). Trainor, J. et al. (2004). A Framework For Support (Third A Framework For Support (Third Edition).Edition). Toronto: Canadian Mental Health Association. Toronto: Canadian Mental Health Association.
