a longitudinal study of mental health consumer/survivor initiatives: part 1—literature review and...

JOURNAL OF COMMUNITY PSYCHOLOGY, Vol. 34, No. 3, 247–260 (2006)Published online in Wiley InterScience (www.interscience.wiley.com).© 2006 Wiley Periodicals, Inc. DOI: 10.1002/jcop.20097

A LONGITUDINAL STUDY OFMENTAL HEALTH CONSUMER/SURVIVOR INITIATIVES: PART 1—LITERATURE REVIEW ANDOVERVIEW OF THE STUDY

Geoffrey NelsonWilfrid Laurier University

Joanna Ochocka and Rich JanzenCentre for Research and Education in Human Services

John TrainorCentre for Addiction and Mental Health

Mental health consumer-run organizations are alternatives to mainstreammental health services, and they have the dual focus of supporting membersand creating systems change. The existing literature suggests that theseorganizations have beneficial impacts on social support, communityintegration, personal empowerment, subjective quality of life, symptom distress,utilization of hospitals, and employment/education. However, much of thisresearch is cross-sectional or retrospective and has not used comparison groups,thus limiting conclusions about the effectiveness of these organizations inimproving the lives of members. Although many consumer-run organizationsalso have a focus on social systems change, there has been little researchdocumenting either the nature of these activities or the system changes thatresult from such activities. We provide an overview of a longitudinal study offour mental health Consumer/Survivor Initiatives. The study examines both

A R T I C L E

The research reported in this set of articles was one of several projects funded under the Community MentalHealth Evaluation Initiative (CMHEI) by the Ontario Ministry of Health and Long-Term Care through theOntario Mental Health Foundation. We would like to thank staff members of the Centre for Research andEducation in Human Services, who composed the research team for this project and who assisted with data col-lection and analysis; the members of the Ontario Peer Development Initiative and the four Consumer/SurvivorInitiatives who participated on the project steering committee and guided the conceptualization, implementa-tion, interpretation, and dissemination of the research; and the investigators for the CMHEI and research staffof the Health Systems Research and Consulting Unit, Centre for Addiction and Mental Health, Toronto, fortheir work in coordinating all of the projects and for data processing.Correspondence to: Geoff Nelson, Department of Psychology, Wilfrid Laurier University, Waterloo, ON N2L3C5. E-mail: [email protected]

individual-level and systems-level activities and impacts by using bothquantitative and qualitative methods with a participatory action researchframework. © 2006 Wiley Periodicals, Inc.

In the mental health field, there has been a growing recognition of the capacity of peoplewho have severe mental illness to take action on behalf of themselves and others (Corrigan& Garman, 1997; Davidson et al., 1999; Salzer, 2002; Solomon, 2004; Solomon & Draine,2001). This capacity is expressed in a number of ways, including consumer-provided servic-es, in which peers are hired as case managers or members of Assertive CommunityTreatment (ACT) teams to provide support (Davidson et al., 1999; Solomon & Draine,2001); self-help/mutual aid groups (Humphreys, 1996; Kyrouz & Humphreys, 1996); con-sumer-run businesses or employment activities (Trainor & Tremblay, 1992); and consumer-operated organizations (Mowbray & Tan, 1993; Segal, Silverman, & Temkin, 1995). As thesevarious forms of peer support become a more prominent and legitimate part of the mentalhealth landscape, there are increasing calls to examine the nature and effects of thesediverse forms of help (Davidson et al., 1999; Solomon, 2004; Solomon & Draine, 2001).

Consumer/Survivor Initiatives (CSIs) are organizations that are operated exclusive-ly by and for people who have a history of mental illness. Note that the termsconsumer/survivor and Consumer/Survivor Initiatives were developed by people who havemental illness to refer to themselves and their organizations. The Consumer/SurvivorDevelopment Initiative in Ontario (now called the Ontario Peer Development Initiative,OPDI) was formally launched in the spring of 1991, when the Ontario Ministry of Healthand Long-Term Care provided $3.1 million in funding for consumer-run organizations.There are now more than 60 CSIs in Ontario, which have a total budget of more than $5million. Each CSI is unique because CSIs are driven by the needs of members. However,the different CSIs offer one or more of the following program activities: one-to-one peersupport, self-help and peer support groups, community economic development, educa-tion and training for the public and mental health professionals, advocacy to create sys-tems-level change, opportunities for consumer/survivors to develop their skills, creationand distribution of resources based on consumer/survivor knowledge, and artistic andcultural activities (Consumer/Survivor Development Initiative, 1996; Trainor, Shepherd,Boydell, Leff, & Crawford, 1996, 1997).

As an exemplar of consumer-run organizations, CSIs are more comprehensive intheir approach than other forms of peer support mentioned, because CSIs can provideone-to-one peer support, self-help/mutual aid groups, employment activities, and arange of other activities that members create. It is also important to clarify what we meanby the term self-help, which is often used to refer to self-help groups but also can refer tosolitary activities, such as bibliotherapy or self-directed treatment. Consumer-run organ-izations may utilize print materials to assist members, but their emphasis is clearly on self-help groups, mutual aid, and peer support. Thus, in the context of consumer-run organ-izations, self-help refers primarily to the social support provided by individual members,self-help/mutual aid groups, and the organization as a whole.

The purpose of this set of articles is to report on a longitudinal study of four con-sumer-run organizations in Ontario. The articles examine impacts on both individualsand systems, using both quantitative and qualitative methods. In this article, we firstreview the literature on consumer-run, self-help organizations. We then provide anoverview of the current longitudinal study. The findings of the research are reported inthe next three articles (Parts 2–4).

248 • Journal of Community Psychology, May 2006

Journal of Community Psychology DOI: 10.1002/jcop

LITERATURE REVIEW

Rooted in the concepts of peer support and recovery (Deegan, 1988; Jacobson & Greenley,2001; Mead, Hilton, & Curtis, 2001), consumer-run organizations strive to be different fromthe formal mental health system and mainstream professional services, which are oftenviewed as bureaucratic and paternalistic (McCubbin, 1994). Mental health agencies focus ontreatment or case management, whereas consumer-run organizations provide activities andsupports that are aimed at fostering socialization, mutual support, empowerment, and sys-tems-level change (Nelson, Lord, Griffin, & Ochocka, 1998). Moreover, whereas relation-ships between consumer/survivors and professionals are typically characterized by an imbal-ance of power, CSIs create adjustments that allow members to share power (Chamberlin,1990). Moreover, CSIs not only strive to empower members, but seek to create social systemschange with the goal of creating more supportive communities, services, and policies forconsumer/survivors. In the following sections, we review literature pertinent to both individ-ual and systems impacts of mental health consumer-run organizations.

Impacts of Consumer-Run Self-Help Organizations on Members

Outcomes of Participation. Over the past decade, there have been a number of quantitativestudies that have evaluated the impacts of different types of peer support programs for con-sumer/survivors, and reviews of these studies have suggested positive impacts on a numberof outcome dimensions (Davidson et al., 1999; Kyrouz & Humphreys, 1996). These dimen-sions include social support, community integration, personal empowerment, subjectivequality of life, symptom distress, utilization of hospitals, and employment/education.

Reviews of the literature (Kyrouz & Humphreys, 1996; Kyrouz, Humphreys, &Loomis, 2003) have suggested positive impacts of self-help/mutual aid groups on thesocial support and social networks of consumer/survivors, but none of these studies usedcomparison groups. Thus, it is uncertain whether reported improvements in social sup-port are attributable to self-help participation. A second important outcome to consideris community integration, or the extent to which people meaningfully participate in com-munity activities. Qualitative research (Nelson, Lord, & Ochocka, 2001; Tranior et al.,1996, 1997) has found that participation in CSIs is a springboard for many people tobecome more active in other community settings. In a study of four consumer-run organ-izations, Segal and Silverman (2002) found that after controlling for baseline levels ofsocial participation and demographic variables, the degree of organizational empower-ment of the four settings was positively related to members’ ratings of their social partic-ipation 6 months later.

Third, personal empowerment, which is of considerable importance to CSIs (Trainoret al., 1996, 1997), is a multidimensional construct that refers to perceptions of power, feel-ings of confidence, autonomy, and community activism (Rogers, Chamberlin, Ellison, &Crean, 1997). Again, qualitative research has suggested enhanced personal empowermentof consumer/survivors as a function of their participation in CSIs (Nelson et al., 2001;Tranior et al., 1996, 1997). Also, Segal and Silverman (2002) found that organizationalempowerment was positively related to personal empowerment 6 months later, after con-trolling for baseline ratings of personal empowerment and demographic variables. Fourth,subjective quality of life (feelings of satisfaction in different areas, such as housing and rela-tionships) is another outcome domain that may be enhanced by participation in consumer-run organizations, but there has yet to be a study that has tested this hypothesis.

Consumer/Survivor Initiatives: Part 1 • 249


Fifth, participation in consumer-run organizations may help to reduce psychiatricsymptoms and enhance personal management of an illness. In a study of self-help groupsfor people who have mood disorders, Powell, Yeaton, Hill, and Silk (2001) found thatparticipants’ perceptions of involvement in self-help groups were related positively tomanagement of their illness at a 1-year follow-up after controlling for baseline levels ofillness management, illness severity, demographic variables, social support, and profes-sional treatment. Similarly, in a study of people who have substance use disorders (ofwhom 35% also had a mental health problem), Moos, Schaefer, Andrassy, and Moos(2001) found that the amount of participation in self-help groups was associated with areduction in psychiatric symptoms and symptom distress.

Participation in consumer-run organizations may reduce the utilization of institu-tional mental health services. Most consumer/survivors find treatment services to beuseful and important, but many also recognize their need for reduced dependence onsuch services. Several studies of self-help/mutual aid groups and consumer-run organi-zations have found reductions in rates of rehospitalization and use of other mentalhealth services associated with active participation in a CSI (Edmunson, Bedell, &Gordon, 1984; Kennedy, 1989; Rappaport et al., 1985; Trainor et al., 1996, 1997; Trainor& Tremblay, 1992). However, these studies have not used control or comparison groups.Thus, it is uncertain as to whether participation in CSIs accounts for reduced rates ofrehospitalization. Finally, participation in consumer-run organizations may lead to moreinstrumental role involvement in the community, such as employment (be it for pay oras a volunteer) or education.

Several of the early quantitative studies of consumer-run self-help organizations usedlongitudinal designs, but none used a comparison group. A more recent study coordinat-ed by Dr. Jean Campbell is using a randomized design to examine the impacts of peersupport on mental health consumers. More than 1,800 participants at eight differentsites were randomly assigned to either traditional mental services or traditional mentalhealth services and peer support. The impacts of this intervention are being studied overa one-year period (www.cstprogram.org/consumer%20op/index.html).

In addition to these quantitative studies, some researchers (e.g., Rappaport, 1993)have used a qualitative, narrative approach to the study of consumer-run organizations.For example, Kennedy and Humphreys (1994) found positive changes in the self, rela-tionships with others, the universal order, and personal problems in a qualitative study of30 members of two 12-step groups (including the GROW organization for people withmental illness). Similarly, in a qualitative study of 46 members of SchizophrenicsAnonymous, Weaver Randall, Salem, and Reischl (2001) reported a process of recoveryover time, including identity transformation and enhanced well-being and quality of life.Corrigan and colleagues have used qualitative methods to examine recovery processes inthe program materials and testimonies (Corrigan et al., 2002) and interviews (Corrigan etal., 2005) of members of the GROW self-help organization. Becoming more reasonable inone’s thoughts and actions, becoming more active and involved in the community, andgaining a sense of personal value were seen as important for one’s process of recovery.

Helpful Processes. In addition to the focus on outcomes, it is important to understand the qual-ities of consumer-run organizations that contribute to positive growth in members. Levine(1988) suggested that self-help organizations provide their members “with an ideology thatserves as the basis for reestablishing a sense of community and for coping with recurrentproblems of the group’s core issue” (p. 167). Other helpful qualities identified by Levineinclude a psychological sense of community, confession, catharsis, and criticism in a group



context; social role models; the opportunity to learn coping strategies; and a network of sup-portive relationships. In a study of GROW self-help groups, Roberts and associates (1999)found that giving help to others was associated with positive psychosocial well-being.Research has also found that organizational empowerment (Segal & Silverman, 2002) andidentification with the self-help organization (Hatzidimitriadou, 2002) were related to per-sonal empowerment. In a study of consumer-run organizations, Yanos, Primavera, andKnight (2001) found that the relationship between participation in self-help and positivesocial functioning was mediated by the use of problem-centered coping strategies. In a qual-itative study, Corrigan and colleagues (2005) found that peer support was the most impor-tant element of the GROW organization for recovery.

Systems-Level Activities and Impacts of Consumer-Run Organizations

Consumer-run organizations vary according to their political ideology and focus onsocial change (Emerick, 1990, 1995; Hatzidimitriadou, 2002). Some organizations takea more overtly political posture by locating the causes of members’ problems in politi-cal and social institutions (Humphreys & Rappaport, 1994). Since the 1970s, we haveseen the development of mental health consumer/survivor organizations that not onlyoffer mutual support but also have agendas for social and legal change (Chamberlin,1978; Weitz, 1984). Many of these organizations view themselves as part of a socialmovement for the liberation of psychiatric survivors (Burstow & Weitz, 1988;Chamberlin, 1978, 1984; Everett, 1994). History has shown a long history of abuse inpsychiatry (Deutsch, 1948; Whitaker, 2001), whether in its crude physical treatments(Collins, 1998) or in forced incarceration (Szasz, 1974). Consumer-run organizationshave recognized that, left to its own devices, the medical/psychiatric/governmentaltriad can produce and condone abusive situations. In this sense, consumer-run organ-izations view themselves as essential rudders for a mental health system that can runout of control. As a result, they have strived to change the face of laws and policies andthe operations of service delivery systems, so as to add new dimensions to clinical train-ing; to alter traditional relationships between mental health professionals and con-sumer/survivors; and to change the public perception of mental health challenges(Bassman, 2001; Everett, 1998, 2000; Humphreys, 1997; McLean, 1995; Van Tosh,Ralph, & Campbell, 2000).

Yet despite the existence of consumer-run self-help organizations that engage inimportant systems-level activities, research has tended to focus primarily on these organ-izations’ impacts on their individual members (Kyrouz et al., 2003; Trainor et al., 1997).The potential of consumer-run organizations to achieve systems-level impacts hasreceived less systematic attention in the literature (Humphreys & Rappaport, 1994).When systems-level impacts are discussed, researchers have discussed the impacts of theloosely defined mental health consumer and survivor movement without documentingthe specific role of consumer-run initiatives within this movement (Katz, 1993; McLean,2000). Alternatively, researchers have focused on the outcomes of consumer participa-tion in community planning, without directly investigating the role of consumer-runorganizations in achieving community-level changes, leaving much of the credit to gov-ernments that have recently sponsored partnerships between services and consumer/sur-vivors (Happell & Roper, 2003; Masters et al., 2002; Milewa, Dowswell, & Harrison, 2002).Finally, researchers have noted a lack of formal and systematic research evaluating theimpact of consumer-run organizations beyond their members (Bowl, 2002). In discussing



research on consumer empowerment and discrimination against consumers, Corriganand Garman (1997) asserted that “researchers must examine not only individuals withschizophrenia but also groups, organizations, service systems, and communities in whichpsychosocial interventions occur” (p. 349).

Mental health consumer–run organizations are one exemplar of alternative settings,organizations that are created by disadvantaged groups as an alternative to mainstreamprofessional services that are viewed as paternalistic and unhelpful or as harmful to peo-ple who are disadvantaged. Alternative settings have a strong emphasis on creating a sup-portive community, recognizing the strengths of members, promoting power sharing andmember control, providing a holistic approach to health and well-being, and advocatingfor social change (Reinharz, 1984; Riger, 1984). Moreover, alternative settings strive topromote second-order or transformative change, changes in the “rules of the game” orthe way business is typically conducted, as opposed to first-order or ameliorative change,which focuses on improving services without addressing the underlying values andassumptions on which those services are based (Nelson & Prilleltensky, 2005).

One of the fundamental changes practiced in alternative settings is that of “powerreversal” (Weitz, 1984). In mental health consumer–run organizations, self-help and peersupport programs eliminate the power differential that exists between professionals and“patients” or “clients” by emphasizing member equality and mutual aid. As we noted ear-lier, this theme of adjustment in the balance of power can also be implemented to createsystemic change, and members of consumer-run organizations actively participate tochallenge the status quo and make the community more welcoming to people who havemental health challenges. In contrast to activities to support individual members, whichfocus on the values of caring and compassion, system-change activities address issues ofsocial justice, such as consumers’ access to concrete resources (e.g., housing, employ-ment) and the elimination of discrimination against and stigma assigned to people whohave mental health challenges (Nelson et al., 2001; Nelson & Prilleltensky, 2005).

OVERVIEW OF THE STUDY

As was noted earlier, the purpose of the study was to examine the activities and impactsof CSIs on both individuals and systems.

Research Context and Participatory Action Research Approach

This study was one of six research projects funded by the Ontario Ministry of Health andLong-Term Care to evaluate four different types of community mental health programsfor people who have severe mental illness: case management, crisis intervention, familyself-help, and CSIs. This Community Mental Health Evaluation Initiative (CMHEI) wascoordinated by the Health Systems Research and Consulting Unit (HSRCU) of theCentre for Addiction and Mental Health (CAMH) in Toronto (see Dewa et al., 2002, fora description of the overall design of the CMHEI). Although each study had its own teamof investigators and research staff, all of the studies used some common measures andcollected data from participants at the same periods.

When the call for proposals was announced, we met with the coordinator of theOntario Peer Development Initiative (OPDI) to consider applying for a grant to studythe CSIs. From the beginning, we used participatory action research (PAR), which has



been defined as “a research approach which consists of the maximum participation ofstakeholders, those whose lives who are most affected by the problem under study, inthe systematic collection and analysis of information for the purpose of taking actionand making change” (Nelson et al., 1998, p. 885). This approach is particularly wellsuited to research with CSIs. Members of CSIs do not want to be “research subjects,”but rather “active partners” in the research process. Moreover, CSIs are member driv-en and are interested in participating in activity that they believe is meaningful and willbe useful for the organizations and their members. We began by holding a series ofmeetings with representatives of several CSIs and the OPDI coordinator to develop theproposal. It is important to note that the research team members are not serviceproviders and that we had no role in providing services or supports within the CSIs orin acting as consultants to the CSIs about their programs. The CSIs operated asautonomous alternative settings throughout the research process, and the role of theresearch team was to conduct the research. We have reflected on some of the chal-lenges in conducting the research in a previous article (Nelson, Ochocka, Janzen,Trainor, & Lauzon, 2004).

Once we obtained funding for the research, we (the researchers and the OPDI coor-dinator) selected four CSIs for participation in the research. The selection was madeaccording to several criteria: (1) the level of interest and the willingness to commit theinvolvement of the CSI and its members to a major research initiative for at least 5 years,(2) the ability of the CSI to recruit new members into the CSI and the research, and (3)geographic proximity to the researchers. A total of six CSIs were visited during the sum-mer of 1998; three were invited to participate; and all accepted the invitation. Because ofunanticipated difficulties in recruiting an adequate number of participants in one CSI, asecond CSI in the same region was approached and agreed to participate, beginning inthe year 2000. These sites are not representative of all CSIs in the province, and we donot claim to generalize the findings beyond these particular settings.

The project was managed by staff from the Centre for Research and Education inHuman Services, a leader in PAR. There were two main components of our PAR process:First, the research was guided by a Steering Committee, which was composed of the inves-tigators, two senior researchers who manage the project, an OPDI representative, theexecutive directors of the four CSIs, and CSI volunteers. This committee was chaired bya consumer/survivor since its inception and it met every 2 to 3 months to discuss, review,and approve all of the research activities undertaken. Second, consumer/survivorresearch assistants (RAs) were hired and trained to recruit participants and conduct theinterviews. During the main data collection phase of the study, meetings of this researchteam were held monthly or bimonthly. These meetings were facilitated by the seniorresearchers and were held to ensure that the data were collected in a timely and appro-priate manner, to provide support to the RAs, to troubleshoot problems, and to providetraining and supervision. Our experience is that these PAR processes are essential forbuilding trust and enhancing communication and collaboration between the researchersand the consumer/survivors who operate and participate in the CSIs (Ochocka, Janzen,& Nelson, 2002; Reeve, Cornell, D’Costa, Janzen & Ochocka, 2002).

As for the action component of PAR, we produced short summary bulletins describ-ing the preliminary findings of the study as they emerged from the analysis. These werepresented to senior government policy makers in the Ontario Ministry of Health andLong-Term Care at meetings of the CMHEI working group, along with oral presentationsabout the study. These summary bulletins were also distributed to a wide range of gov-ernment planners across the province, including the nine regional Mental Health Task



Forces that drafted reports for mental health reform. We also wrote regular updates onthe research for the OPDI newsletter Around the Loop, and we presented the findings atannual conferences organized by the OPDI.

At the conclusion of the study, we reported the main findings in a fact sheet andsummary bulletin. These summary bulletins, which contained recommendations,were also used by the OPDI and CSIs for various educational and advocacy activities.We also created a project Web site, held feedback meetings for each of the sites, heldmeetings in seven different regions of the province (to which consumers, mentalhealth service providers, and planners were invited), held a feedback meeting withsenior policy makers in the Ontario Ministry of Health and Long-Term Care, and cre-ated a digital video disk on the CSIs and the research, From Madhouse to Our House. Wealso presented the findings at professional conferences in Ontario and elsewhere, andwe are in the process of publishing the main findings of the study.

Description of the CSIs and Their Programs

At the beginning of the research, we visited each CSI to learn more about the programs,activities, and desired outcomes at each setting. Through discussions with participatingCSI members and staff and a review of CSI documents, a program logic model was devel-oped for each CSI (Rush & Ogborne, 1991). Each logic model divided the activities andoutcomes into individual level and system level. We also constructed an overall logicmodel, which consists of three basic components: (1) identification of program compo-nents and their objectives, (2) activities associated with each of the program components,and (3) intended outcomes that are expected to result from program activities (seeNelson et al., 2004). The creation of the logic model was useful in two ways: First, themodel helped us to identify the main program activities of the CSIs, which includedinternal activities (e.g., meetings, committees, recreational events), drop-in, self-helpgroups, and one-to-one peer support. Second, identification of the intended outcomeshelped us to select appropriate outcome measures.

The four CSIs are all located in southwestern Ontario, and all provide opportunitiesto become involved in internal organization development activities (e.g., volunteer activ-ity within the CSI, attendance at membership meetings, participation on CSI commit-tees) and external systems-level activities (e.g., education, advocacy, community plan-ning, action research). Moreover, the four CSIs possess many of the qualities that havebeen identified as critical ingredients of consumer-run organizations (Holter, Mowbray,Bellamy, MacFarlane, & Dukarski, 2004), including “consumer control, consumer choic-es and opportunities for decision making, the voluntary nature of participation (and theabsence of coercion), and respect for members by staff” (p. 60).

One of the CSIs serves a broad geographic area, operating several self-help groupsin several small- to medium-sized cities (largest city is 130,000). Another CSI serves alarge urban population (500,000) and concentrates its activities on a drop-in center andon one-to-one peer support. The third CSI also serves a large urban population(300,000) and provides a variety of self-help groups but does not operate a drop-in cen-ter. The final CSI serves a medium-sized urban population (100,000) and operates self-help groups, a drop-in center, and a ceramics collective. All of the CSIs have an executivedirector and a small number of other paid staff. The four CSIs have a combined budgetof $640,000 (average budget for each CSI is $160,000 in Canadian dollars) and morethan 750 members on their mailing lists.



Individual-Level Activities and Impacts

Research Design. Regarding the questions that are examined and the methods that areused in self-help research, Humphreys and Rappaport (1994) argue that the question“Do self-help groups work better than a ‘no-treatment condition’?” (p. 224) is inappro-priate. A more fitting question is, What is the impact of level of participation in a CSI onpeople who have received mental health treatment? Because self-help can be developedto accommodate new members and because CSIs are member controlled, the very ideaof allowing professional researchers to decide who can receive support is anathema toCSIs. Attempting to force CSIs into a true experimental design would change the condi-tions of these initiatives, thereby defeating the purpose of examining CSIs as they natu-rally occur (Humphreys & Rappaport, 1994).

For these reasons, we used a nonequivalent comparison group design (Cook &Campbell, 1979). Two groups of participants are compared: (1) new, active participantsof CSIs and (2) people who are eligible for but who do not become involved in a CSI.Data were collected through interviews with each participant at three different periods:baseline (BL) and follow-up interviews 9 and 18 months later. All BL interviews for CSIparticipants were conducted within 3 months of each new participant’s involvement witha CSI. Active CSI participants for the 9-month follow-up interview were defined as thosewho participated more than 2 hours in a CSI over the first 8 months of their involvement;active CSI participants for the 18-month follow-up interview were defined as those whoparticipated more than 4 hours in a CSI over the first 16 months of their involvement.

Interviews. Almost all of the BL, 9-month, and 18-month interviews were completed byconsumer/survivor RAs. The interviews were conducted in the participants’ homes, atthe CSIs, or at other convenient locations chosen by the participants. In addition to con-ducting the interviews, the RAs provided all participants with information about the CSIs,and in some cases, with information about other services in the communities, dependingupon the needs of the participant.

Quantitative data were gathered from all participants by using a structured interviewprotocol, which consisted of demographic variables, service utilization, and a number ofscales tapping outcome dimensions. A subset of the overall sample provided qualitativedata through semistructured interviews at the same intervals. This mixed-methodsapproach was used for triangulation of the findings (Patton, 2002). Qualitative data com-plement the quantitative data by providing much more depth regarding participants’ lifeexperiences and changes and by providing insights on the qualities of CSIs that wereimportant for participants’ growth. Other researchers have noted the value of using qual-itative, naturalistic, and narrative methods for the study of members of self-help groupsand organizations for people who have mental illness (Kennedy, Humphreys, &Borkman, 1994; Rappaport, 1993). More information on the quantitative and qualitativemethods used to examine individual-level impacts is provided in Parts 2 and 3 of this setof articles.

Population, Recruitment, and Sampling. Consumer/survivor RAs developed and imple-mented a recruitment strategy for the research with each of the four CSIs. Dependingon the context, participants were recruited through other community agencies or hos-pitals or through people who learned of the CSI by word of mouth. The inclusion crite-ria were that participants had no previous participation in the CSI and that they met the



OPDI definition of who could become a CSI member—“‘Consumer/survivors’ aredefined as ‘people who have a mental health problem and/or people who have usedmental health services or programs’” (Trainor et al., 1996, p. 1). Individuals meetingthese criteria were asked whether they were interested in participating in a researchproject, and they were provided with an information letter explaining the nature of thestudy and their rights as participants. All of the participants met the inclusion criteria ofhaving had no previous participation in a CSI, of having a psychiatric diagnosis, and ofhaving used mental health services.

For our BL sample, we found that 31% had been hospitalized for mental healthproblems within the past 9 months, and more than 90% had received a diagnosis ofmood disorder or schizophrenia. Moreover, we found that in comparison to con-sumer/survivors participating in four ACT Teams (for people who have severe mentalillness) in eastern Ontario, at BL CSI members and ACT clients are similar on manydimensions, such as Social Support, Personal Empowerment, and Subjective Quality ofLife. However, CSI members have higher rates of completing high school, higher ratesof current employment, and higher rates of involvement in vocational-educational pro-grams, suggesting higher levels of well-being than those of ACT clients. On the otherhand, CSI members have higher levels of Symptom Distress, higher rates of physicalhealth problems, greater housing instability, and higher rates of emergency room uti-lization than ACT clients, suggesting that they have more difficulties than ACT clients.Also, CSI participants were more likely to have a diagnosis of mood disorder or anxietydisorder and less likely to have a diagnosis of schizophrenia than ACT clients (Goeringet al., in press).

All of the new, active participants in the four CSIs consented to participate in theresearch. Recruitment and BL interviews began in April 1999 and ended in September2001. All participants were given an honorarium of $15 for each interview. Also duringthe BL interview, the RAs discussed ways of keeping in touch with the participant andasked for the participant’s consent to provide names of people who could assist in con-tacting the person should he/she move and not leave a forwarding address or phonenumber. In the time between the BL and the 9- and 18-month interviews, the RAs did avariety of activities to keep in touch with participants, including contacting them byphone every 2 months to ask questions about their participation in the CSIs, sending athank-you card after each interview and a birthday card and season’s greetings card oncea year, and providing participants with summary bulletins describing the findings of theresearch. Whenever a participant’s phone number changed or mail sent to the personwas returned to sender, the RAs began a process of tracking the participant through con-tact information that participants had provided.

Systems-Level Activities and Impacts

A combination of quantitative and qualitative methods was used to examine systems-levelactivities and outcomes of CSIs.

Quantitative Systems-Level Tracking Tool. We developed a systematic way of keeping track ofsystems-level activities within the CSIs. With regard to systems-level activities, we notedfour main types of activities: (1) public education and relations (activities that increaseawareness or change in public opinions about mental health issues and people who expe-rience mental health issues), (2) political advocacy (activities that work toward changes



in social policies and practices), (3) community planning and collaboration (activitiesthat bring about changes in planning practices and existing services, as well as the cre-ation of new supports and services), and (4) action research (activities that gather infor-mation to support the three previously mentioned systems-level activities). Although sitesdiffered on the specific activities within each of these four categories—they each empha-sized certain categories over others—they all had at least some activities within each cat-egory. To assess these activities, a systems-level tracking tool was developed and data werecollected prospectively at three of the CSIs for a 25-month period. More detailed infor-mation on the tracking tool is provided in Part 4 of this set of articles.

Qualitative Systems-Level Interviews. The quantitative tracking log was complemented by aseries of interviews and focus groups exploring systems-level activities and outcomes in amore qualitative way. Whereas the quantitative tracking system provided “breadth” ofinformation in understanding systems-level activities, the qualitative methods empha-sized a “depth” of understanding. Moreover, qualitative interviews gave greater insightinto the impacts of systems-level activities. More detailed information on the qualitativeinterviews is provided in Part 4 of this set of articles.

Overview of Parts 2–4

In the following three articles, we provide more methodological details, and we summa-rize and discuss the main findings of the research. Part 2 provides an account of individ-ual-level impacts found in the quantitative data; Part 3 summarizes individual-levelimpacts found in the qualitative data; and Part 4 describes systems-level activities andimpacts from both quantitative and qualitative data.

REFERENCES

Bassman, R. (2001). Whose reality is it anyway? Consumer/survivors/ex-patients can speak forthemselves. Journal of Humanistic Psychology, 41(4), 11–35.

Bowl, R. (2002). Psychiatric survivors and consumers in the United Kingdom—a successful socialmovement? Ethical and Human Sciences and Services, 4, 107–120.

Burstow, B., & Weitz, D. (Eds.). (1988). Shrink resistant: The struggle against psychiatry in Canada.Vancouver, B.C.: New Star Books.

Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system.Toronto: McGraw-Hill.

Chamberlin, J. (1984). Speaking for ourselves: An overview of the ex–psychiatric patients’ move-ment. Psychosocial Rehabilitation Journal, 8(2), 56–63.

Chamberlin, J. (1990). The ex–psychiatric patients’ movement: Where we’ve been and where we’regoing. The Journal of Mind and Behavior, 11, 323–336.

Collins, A. (1998). In the sleep room: The story of the CIA brainwashing experiments in Canada.Toronto: Key Porter Books.

Consumer/Survivor Development Initiative. (1996). Consumer/Survivor Development InitiativeProject Descriptions: “All 36 of the Consumer/Survivor Initiatives described in their ownwords”. Toronto: Consumer/Survivor Development Initiative.

Cook, T.D., & Campbell, D.T. (1979). Quasi-experimentation: Design and analysis issues for fieldsettings. Chicago: Rand McNally.



Corrigan, P.W., & Garman, A.N. (1997). Considerations for research on consumer empowermentand psychosocial interventions. Psychiatric Services, 48, 347–352.

Corrigan, P.W., Calabrese, J.D., Diwan, S.E., Keogh, C.B., Keck, L., & Mussey, C. (2002). Somerecovery processes in mutual-help groups for persons with mental illness: 1. Qualitative analy-sis of program materials and testimonies. Community Mental Health Journal, 38, 287–301.

Corrigan, P.W., Slopen, N., Gracia, G., Phelan, S., Keogh, C.B., & Keck, L. (2005). Some recoveryprocesses in mutual-help groups for persons with mental illness; II: Qualitative analysis of par-ticipant interviews. Community Mental Health Journal, 41, 721–735.

Davidson, L., Chinman, M., Kloos, B., Weingarten, R., Stayner, D., & Tebes, J.K. (1999). Peer sup-port among individuals with severe mental illness: A review of the evidence. ClinicalPsychology: Science and Practice, 6, 165–187.

Deegan, P.A. (1988). Recovery: The lived experience of rehabilitation. Psychosocial RehabilitationJournal, 11(4), 11–19.

Deutsch, A. (1948). The shame of the states. New York: Harcourt Brace.Dewa, C.S., Durbin, J., Wasylenki, D., Ochocka, J., Eastabrook, S., Boydell, K., et al. (2002).

Considering a multisite study? How to take the leap and have a soft landing. Journal ofCommunity Psychology, 30, 173–187.

Edmunson, E.D., Bedell, J.R., & Gordon, R.E. (1984). The Community Network DevelopmentProject: Bridging the gap between professional aftercare and self-help. In A. Gartner & F.Riessman (Eds.), The self-help revolution (pp. 195–203). New York: Human Sciences Press.

Emerick, R.E. (1990). Self-help groups for former patients: Relations with mental health profes-sionals. Hospital and Community Psychiatry, 41, 401–407.

Emerick, R.E. (1995). Clients as claims makers in the self-help movement: Individual and socialchange ideologies in former mental patient self-help newsletters. Psychosocial RehabilitationJournal, 18(3), 17–35.

Everett, B. (1994). Something is happening: The contemporary consumer and psychiatric survivormovement in historical context. The Journal of Mind and Behavior, 15, 55–70.

Everett, B. (1998). Participation or exploitation? Consumers and psychiatric survivors as partnersin planning mental health services. International Journal of Mental Health, 27, 80–97.

Everett, B. (2000). A fragile revolution: Consumers and psychiatric survivors confront the power ofthe mental health system. Waterloo, Canada: Wilfrid Laurier University Press.

Goering, P., Durbin, J., Sheldon, T., Ochocka, J., Nelson, G., & Krupa, T. (in press). Who uses con-sumer-run self-help organizations? American Journal of Orthopsychiatry.

Happell, B., & Roper, C. (2003). The role of a mental health consumer in the education of post-graduate nursing students: The students’ evaluation. Journal of Psychiatric and Mental HealthNursing, 10, 343–350.

Hatzidimitriadou, E. (2002). Political ideology, helping mechanisms and empowerment of men-tal health self-help/mutual aid groups. Journal of Community and Applied SocialPsychology, 12, 271–285.

Holter, M.C., Mowbray, C.T., Bellamy, C.D., MacFarlane, P., & Dukarski, J. (2004). Critical ingredients ofconsumer run services: Results of a national survey. Community Mental Health Journal, 40, 47–63.

Humphreys, K. (Ed.). (1996). Self-help/mutual aid initiatives by people with psychiatric disabilities[Special section]. The Community Psychologist, 29, 9–25.

Humphrey, K. (1997). Self-help/mutual aid organizations: The view from Mars. Substance Use andMisuse, 32, 2105–2109.

Humphreys, K., & Rappaport, J. (1994). Researching self-help/mutual aid groups and organiza-tions: Many roads, one journey. Applied and Preventive Psychology, 3, 217–231.

Jacobson, N., & Greenley, D. (2001). What is recovery? A conceptual model and explication.Psychiatric Services, 52, 482–485.

Katz, A.H. (1993). Self-help in America: A social movement perspective. New York: Twayne.



Kennedy, M. (1989). Psychiatric rehospitalization of GROWers. Paper presented at the BiennialConference of the Society for Community Research and Action, East Lansing, MI.

Kennedy, M., Humphreys, K., & Borkman, T. (1994). The naturalistic paradigm as an approach toresearch with mutual-help groups. In T. Powell (Ed.), Understanding the self-help organiza-tion (pp. 172–189). Thousand Oaks, CA: Sage.

Kyrouz, E.M., & Humphreys, K. (1996). Do psychiatrically disabled people benefit from partici-pation in self-help/mutual aid organizations? A research review. The CommunityPsychologist, 29(3), 21–25.

Kyrouz, E.M., Humphreys, K., & Loomis, C. (2003). A review of the effectiveness of self-help mutual aidgroups. In B.J. White & E.J. Madara (Eds.), A review of research on the effectiveness of self-helpmutual aid groups (7th ed., pp. 71–86). Cedar Knolls, NJ: American Self-Help Clearinghouse.

Levine, M. (1988). An analysis of mutual assistance. American Journal of Community Psychology,16, 167–188.

Masters, H., Forrest, S., Harley, A., Hunter, M., Brown, N., & Risk, I. (2002). Involving mentalhealth service users and careers in curriculum development: Moving beyond “classroom”involvement. Journal of Psychiatric and Mental Health Nursing, 9, 309–316.

McCubbin, M. (1994). Deinstitutionalization: The illusion of disillusion. The Journal of Mind andBehavior, 15(1/2), 35–53.

McLean, A. (1995). Empowerment and the psychiatric consumer/ex-patient movement in theUnited States: Contradictions, crisis and change. Social Science and Medicine, 40, 1053–1071.

McLean, A. (2000). From ex-patient alternatives to consumer options: Consequences of con-sumerism for psychiatric consumers and the ex-patient movement. International Journal ofHealth Services, 30, 821–847.

Mead, S., Hilton, D., & Curtis, L. (2001). Peer support: A theoretical perspective. PsychiatricRehabilitation Journal, 25, 134–141.

Milewa, T., Dowswell, G., & Harrison, S. (2002). Partnerships, power and the “new” politics of com-munity participation in British health care. Social Policy and Administration, 36, 796–809.

Moos, R.H., Schaefer, J., Andrassy, J., & Moos, B. (2001). Outpatient mental health care, self-helpgroups, and patients’ one-year treatment outcomes. Journal of Clinical Psychology, 57, 273–287.

Mowbray, C.T., & Tan, C. (1993). Consumer-operated drop-in centers: Evaluation of operationsand impact. Journal of Mental Health Administration, 20, 8–19.

Nelson, G., Lord, J., Griffin, K., & Ochocka, J. (1998). “Nothing about me, without me”:Participatory action research with self-help/mutual aid organizations for psychiatric con-sumer/survivors. American Journal of Community Psychology, 26, 881–912.

Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health:Towards empowerment and community. Toronto: University of Toronto Press.

Nelson, G., Ochocka, J., Janzen, R., Trainor, J., & Lauzon, S. (2004). A comprehensive evaluationapproach for mental health consumer-run organizations: Values, conceptualization, design,and action. Canadian Journal of Program Evaluation, 19(3), 29–53.

Nelson, G., & Prilleltensky, I. (Eds.). (2005). Community psychology: In pursuit of liberation andwell-being. London: Palgrave Macmillan.

Ochocka, J., Janzen, R., & Nelson, G. (2002). Sharing power and knowledge: Professional and men-tal health consumer/survivor researchers working together in a participatory action researchproject. Psychiatric Rehabilitation Journal, 25, 379–387.

Patton, M.Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.Powell, T.J., Yeaton, W., Hill, E.M., & Silk, K.R. (2001). Predictors of psychosocial outcomes for

patients with mood disorders: The effects of self-help group participation. PsychiatricRehabilitation Journal, 25, 3–11.

Rappaport, J. (1993). Narrative studies, personal stories, and identity transformation in the mutu-al help context. Journal of Applied Behavioral Science, 29, 239–256.



Rappaport, J., Seidman, E., Toro, P.A., McFadden, L.S., Reischl, T.M., Roberts, L.J., et al. (1985).Finishing the unfinished business: Collaborative research with a mutual help organization.Social Policy, 16, 12–24.

Reeve, P., Cornell, S., D’Costa, B., Janzen, R., & Ochocka, J. (2002). From our perspective:Consumer researchers speak about their experiences in a community mental health project.Psychiatric Rehabilitation Journal, 25, 403–408.

Reinharz, S. (1984). Alternative settings and social change. In K. Heller, R.H. Price, S. Reinharz, S.Riger, & A. Wandersman (Eds.), Psychology and community change: Challenges of the future(2nd ed., pp. 286–336). Homewood, IL: The Dorsey Press.

Riger, S. (1984). Vehicles for empowerment: The case of feminist movement organizations.Prevention in Human Services, 3(2/3), 99–117.

Roberts, L.J., Salem, D.A., Rappaport, J., Toro, P.A., Luke, D.A., & Seidman, E. (1999). Giving andreceiving help: Interpersonal transactions in mutual-help meetings and psychosocial adjust-ment of members. American Journal of Community Psychology, 27, 841–868.

Rogers, E.S., Chamberlin, J., Ellison, M.L., & Crean, T. (1997). A consumer-constructed scale tomeasure empowerment of users of mental health services. Psychiatric Services, 48, 914–918.

Rush, B., & Ogborne, A. (1991). Program logic models: Expanding their role and structure for pro-gram planning and evaluation. Canadian Journal of Program Evaluation, 6, 93–105.

Salzer, M.S. (2002). Consumer-delivered services as a best practice in mental health care deliveryand the development of practice guidelines. Psychiatric Rehabilitation Skills, 6, 355–382.

Segal, S.P., & Silverman, C. (2002). Determinants of client outcomes in self-help agencies.Psychiatric Services, 53, 304–309.

Segal, S.P., Silverman, C., & Temkin, T. (1995). Characteristics and service use of long-term mem-bers of self-help agencies for mental health clients. Psychiatric Services, 46, 269–274.

Solomon, P. (2004). Peer support/peer provided services: Underlying processes, benefits, and crit-ical ingredients. Psychiatric Rehabilitation Journal, 27, 392–401.

Solomon, P., & Draine, J. (2001). The state of knowledge of the effectiveness of consumer provid-ed services. Psychiatric Rehabilitation Journal, 25, 20–27.

Szasz, T. (Ed.). (1974). The age of madness. New York, Jason Aronson.Trainor, J., Shepherd, M., Boydell, K.M., Leff, A., & Crawford, E. (1996). Consumer/Survivor

Development Initiative: Evaluation report. Toronto: Consumer/Survivor Development Initiative.Trainor, J., Shepherd, M., Boydell, K.M., Leff, A., & Crawford, E. (1997). Beyond the service para-

digm: The impact and implications of consumer/survivor initiatives. Psychiatric RehabilitationJournal, 21, 132–140.

Trainor, J., & Tremblay, J. (1992). Consumer/survivor businesses in Ontario: Challenging the reha-bilitation model. Canadian Journal of Community Mental Health, 11(2), 65–71.

Van Tosh, L., Ralph, R.O., & Campbell, J. (2000). The rise of consumerism. PsychiatricRehabilitation Skills, 4, 383–409.

Weaver Randall, K., Salem, D.A., & Reischl, T.M. (2001). Understanding recovery from schizophre-nia in a mutual-help organization. Paper presented at the Biennial conference of the Societyfor Community Research and Action, Atlanta, GA.

Weitz, D. (1984). “On Our Own”: A self-help model. In D.P. Lumsden (Ed.), Community mentalhealth action: Primary prevention programming in Canada (pp. 312–320). Ottawa: CanadianPublic Health Association.

Whitaker, R. (2001). Mad in America: Bad science, bad medicine, and the enduring mistreatmentof the mentally ill. Cambridge, MA: Perseus.

Yanos, P.T., Primavera, L.H., & Knight, E.L. (2001). Consumer-run service participation, recov-ery in social functioning, and the mediating role of psychological factors. PsychiatricServices, 52, 493–500.



a longitudinal study of mental health consumer/survivor initiatives: part 1—literature review and...

Documents