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Qualitative Social WorkCopyright 2004 Sage Publications London, Thousand Oaks, CA and New Delhi, Vol. 3(4): 431–448
Networks of Caring
University at Albany, State University of New York, USA
This article examines consumer-run agency participation by
adults with psychiatric disabilities. Using qualitative data
from 10 intensive interviews, the purpose was to explore
personal meanings attached to agency membership, and
understand the lived experiences of participants. A
grounded hermeneutic approach was utilized to analyse
results. Findings reveal that individuals balance agency utiliz-
ation and external peer network development. Organiz-
ational factors previously found related to social network
enhancement (e.g. empowerment and emphasis on sup-
portive services) were confirmed here. The emergent narra-
tives captured in this study suggest that these agenciesfunction as low-demand, accepting, safe, and sheltering
environments while offering opportunities for human con-
nection, shared agency ownership and community. Finally,
access to otherwise unavailable peer-focused ‘networks of
caring’ was of utmost importance to participants. Impli-cations for the organization and delivery of services are
addressed. Social workers and other mental health pro-
fessionals seeking to maximize community integration and
develop natural supports for clients should exploreconsumer-run agencies.
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Although a growing number of reports in the literature have documented theproliferation of consumer-delivered services in the mental health sector(Davidson et al., 1999; Solomon and Draine, 2001), there remains a need to betterunderstand the specific processes by which individuals with psychiatric disabili-ties construct meaning from participation in peer support services. Defined hereas the exchange of mutual helping between individuals in consumer-runorganizations, peer support (also referred to as self-help) has emerged as an inno-vative service delivery mechanism, particularly for those ill-served by traditionalsystems of care (Hardiman and Segal, 2003). Consumer-run services can alsobe viewed as an embodiment of client-centered principles such as thoseespoused by the social work profession (Solomon and Draine, 1996).
Consumer involvement in service delivery has been recognized in recent
national reports as a promising new practice area in mental health (President’sNew Freedom Commission on Mental Health, 2003; US Department of Healthand Human Services [USDHHS], 1999). The New Freedom CommissionReport acknowledged the role consumers have to play in the transformationof the existing mental health system:
Consumers and families with children with serious emotional disturbances havea key role in expanding the mental health care delivery workforce and creatinga system that focuses on recovery. Consequently, consumers should be involvedin a variety of appropriate service and support settings. In particular, consumer-operated services for which an evidence base is emerging should be promoted.
(President’s New Freedom Commission on Mental Health, 2003: 37)
Such national recognition suggests that after almost 30 years, consumer-
operated services have reached a new level of prominence and are poised forincreased research and development focus. However, despite growing attention,the evidence base for consumer-run services is still in a formative stage. Withoutfurther empirical examination, the survival of such services will face seriouschallenges in today’s evidence-based funding environment (Mead et al., 2001).
Several core benefits of utilizing consumers as service providers have been
identified in the literature (Davidson et al., 1999; Mowbray and Moxley, 1997;Mowbray and Tan, 1993; Salzer, 2002; Segal et al., 1995; Yanos et al., 2001).
Solomon and Draine (1996) posit that consumer providers may be inclinedtoward a naturally empathic relationship with service recipients, and may beable to better advocate for their needs based on experience with the mentalhealth system. Although the peer-to-peer helping relationship appears to beeffective in the context of traditional agency settings (Besio and Mahler, 1993;Bichsel, 1997; Bledsoe Boykin, 1997; Felton et al., 1995; Klein et al., 1998),exponential benefits may be available to those in consumer-run organizations.
Recent findings have delineated some of the benefits of participation in suchagencies in both the individual and organizational realms (Hardiman and Segal,
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2003; Hodges et al., 2004; Kaufmann, 1995; Nikkel et al., 1992; Van Tosh anddel Vecchio, 2000). Access to peer role models, social network expansion,engagement in service provider roles, flexibility in services, client-centered focus,and increased empowerment are but a few of the theorized benefits forconsumer-run agency participants.
To better understand the benefits of service use within a consumer-run
service model, it is necessary to address the meanings recipients attach to theirparticipation in such services. The primary goal of this article is to providefurther insight into how and why individuals with psychiatric disabilities useservices from a consumer-run organization, with a focus on self-constructedmeaning.
The exploration within entails an implicit acknowledgement that to fully
understand complex personal issues such as motivation, hope, help-seeking, andservice utilization, it is necessary to go beyond quantitative measures and utilizequalitative methods addressing the constructed realities and meanings of partici-pants. Narrative methods can give voice to stakeholder realities in evaluationresearch (Guba and Lincoln, 1989) and have been used to strengthen the under-standing of participant narrative and discourse in program implementation foradults with psychiatric disabilities (Felton, 2003). Narrative methods are particu-larly appropriate for studying peer support in mental health (MacNeil and Mead,2003). The purpose of the methodology used in this study was twofold: toaugment previous quantitative findings through further exploration of a quali-tative nature, and to allow for the emergence of participant narratives througha phenomenological process.
This study builds upon quantitative findings that both individual and
organizational level factors impact the experiences of persons utilizingconsumer-run agencies (Hardiman and Segal, 2003). The same study suggestedthat agency characteristics such as commitment to organizational empower-ment, a non-judgmental agency environment, and the relative balance betweenconcrete and affective services were among the strongest predictors of a peer-based network expansion. Although such findings appear to sufficiently illumi-nate some of the above distinctions for peer support users, important underlyingmeanings and narrative explanations have been left uncovered. The qualitativedata collection and analytic techniques used here allow for both augmentationand clarification of such prior findings.
Ten persons with psychiatric disabilities utilizing formal peer support serviceswere recruited and interviewed for this study. The central objective was to givevoice to the narratives of participants, while exploring the phenomenologicalconstruction of meaning around participation in a consumer-run agency
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context. A secondary purpose was to augment existing findings and answer newquestions posed after analysis of prior quantitative data. A qualitative exploratoryapproach was used, guided by a grounded hermeneutic framework (Addison,1992). This approach involved the comparative and iterative analysis of textualdata, in the form of interview transcriptions, as well as process notes taken bythe researcher.
All interview participants were recruited from a consumer-run non-profit
mental health agency located in northern California. The agency was utilized
as a study site for two prior studies of peer-run services (Segal et al., 2002; Segal
et al., 1995), and has been in operation since 1988. The agency provided a
flexible mix of drop-in services, comprised of individual counseling, group
counseling, socialization activities, concrete assistance obtaining benefits,
housing, and advocacy opportunities. Estimated daily attendance was approxi-
mately 75 unique individuals. Agency members floated among programs and
services without restriction. High priority was placed on anonymity, resulting
in minimal agency record keeping. There were 5 paid staff and a rotating group
of approximately 15 volunteers. All paid and volunteer staff were self-identified
consumers of mental health services. A licensed community psychiatrist offered
free consultation and/or counseling on a monthly basis on site. The agency was
entirely funded by local government funding, although no formal affiliation
existed with the public mental health system.
Six of the study participants were men, four women. African Americans
were heavily represented (n
= 7) in order to replicate their presence in theoriginal study (Segal et al., 1995), and to address the paucity of research onminority utilization of peer support organizations. The mean age of partici-pants was 49 years. Participants reported a range of times for length of agencyattendance, from 2–10 years. All participants also reported lengthy experienceas persons with psychiatric disabilities living in the community. All reportedhaving utilized both traditional (i.e. professionally provided) services andconsumer-provided services from numerous organizations.
Eligible study participants met two criteria: (1) the self-reported presence of a
psychiatric diagnosis, and (2) a minimum of weekly agency attendance for at
least three months. A modified form of targeted sampling (Watters and Bier-
nacki, 1989) was used to achieve a sample demographically similar to those
involved in the original agency studies (Segal et al., 1995). According to Watters
and Biernacki (1989: 420), targeted sampling is a ‘purposeful, systematic method’
used to obtain specific numbers of participants within each of several groups,
determined in advance by the researcher. In this case, participants were actively
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sought who resembled the original sample in terms of ethnicity, gender, age,and length of agency experience.
The data collection strategy was semi-focused, iterative, and therefore
flexible. This enabled the inclusion of targeted content areas, while honoringthe need for interview participants to determine the course of their emergentstories. The semi-structured interview guide was developed in conjunction withcolleagues having expertise in qualitative methodologies. Iterative modificationsto the guide were made based on preliminary analysis of returning data frominitial interviews. Basic domains of interest were created in part based on theresults of prior quantitative analysis (Hardiman and Segal, 2003). The interviewguide included questions that would expand upon earlier findings and helpuncover social context and narrative meanings, while also allowing for explo-ration and a participant-directed focus.
All participants were recruited directly at the agency, during varied times
of the day and week to address anticipated variation in times of attendance.
Potential interviewees were identified through a key informant, a peer staffmember at the site. Upon determining eligibility, informed consent procedureswere followed, emphasizing that participants could withdraw at any time forany reason. Participants were given a stipend in appreciation of their completionof an interview. Interviews lasted 90 minutes to 2 hours, and took place eitheron site or in nearby community settings. All interviews were tape-recorded withpermission of the participants and transcribed by a research assistant.
Analysis using the grounded hermeneutic approach is conceptualized as a
‘circular progression between parts and whole, foreground and background,
understanding and interpretation, and researcher and narrative account’
(Addison, 1992: 113). The fundamental goal of the analysis was to interpret the
data, unlock its meanings, and develop a rich understanding of participants’ lived
experiences. In reaching this understanding, it was possible to address back-
ground contextual conditions and practices that ultimately affect how consumers
participate in the agency, experience shared community, and construct personal
The data were analysed using a comparative, inductive method similar to
that used in traditional grounded theory (Glaser and Strauss, 1967). After initialreadings of transcripts, the data were open-coded, then analysed and revisedthrough an ongoing iterative process. Coding continued until a saturation pointwas reached. During the later rounds of analysis, theoretical memos werewritten, analysed, and ultimately given their own coding schema (both in vivoand unique codes). The in vivo coding involved the use of particularly meaning-ful words or phrases from participants as codes. Such codes were grounded inthe specific language and meaning systems of study participants themselves.
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Unique codes were also created and refined in order to capture helpfulconcepts linking thematic materials. Themes emerged after several rounds ofcoding and analysis. Finally, textual data from the researcher’s process noteswere coded, analysed, and interpreted in a similar manner, in order to inte-grate context and the researcher’s own insights through the circular processdescribed.
A wide array of information was obtained about how and why the individuals
in this study use consumer-run agencies. Participants’ words were articulate and
moving, and many described the interview process itself as empowering. For
individuals with psychiatric disabilities, opportunities to share personal stories
are difficult to find, and those interviewed here were thankful for the oppor-
tunity to speak and be heard.
Both similarities and differences between participants were explored,
leading to a complex and multifaceted look at agency utilization. However,participants were clear and powerfully emphatic in their message about theimportance of the agency to their lives. Five key themes emerged as most signifi-cant in the current analysis: (1) sanctuary, (2) recovery and survival, (3) respectand humanity, (4) shared ‘ownership’, and (5) networks of caring. These themesare explicated in the following subsections and connections drawn to the priorquantitative findings whenever possible.
It should be noted that the consistency of findings supporting each theme
was remarkable, with data drawn from almost all participants, rather than anidentifiable subset of individuals. No significant differences by gender or eth-nicity were observed in the five themes reported on herein. In the few caseswhere meaningful disagreement and divergent views among participants wereevidenced, such instances are delineated in the subsections following each theme,in order to clarify the findings. The uniformity of findings within the presentedthemes suggests both their depth and intensity among this sample, and suggestsa degree of transferability to other similar sites.
Participants eloquently described the multiple and formidable challenges facedas they struggle to live successfully in the community. For these persons, theworld is often perceived as imposing and uncaring. Many described the chal-lenges of social navigation in the community as overwhelming and withoutescape or relief. One gentleman reported feeling ‘rootless and in need of a placeto just be’. With its emphasis on unconditional acceptance and low interpersonalexpectations, the consumer-run agency was a calming and centering influence.
One participant’s words portray the agency as a place of safety, refuge, and ulti-mately sanctuary:
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I’ve got someplace where I can go, feel comfortable, where I can hide out whenI feel that it’s not safe to be out there in the streets. Everybody knows my namehere. I can actually relax, let my guard down.
Two dimensions of sanctuary were found in the data: (1) relief from the
demands of the outside world, and (2) the safety and comfort associated with alow-demand environment where they are free to be themselves. The import-ance of relief was evident in the use of descriptive language to refer to theagency: ‘a safe haven’; ‘my home spot’; ‘my place’; ‘my home base’; a ‘lifeline’,and ‘a sanctuary’. Members described it as being an important source of relieffrom harsh social realities and helping ‘refuel’ them to successfully meet a widerange of daily challenges. These challenges include, but are not limited to weather,police harassment, stigma and rejection, exhaustion, hunger, and poverty.
Compounding factors of homelessness, poverty, and substance abuse can
add up to an existence in which there is little escape from hardship, little timefor relaxation, and few places for meaningful social interaction. One individualdescribed feeling like ‘an outcast’ everywhere except for the agency: ‘To be anoutcast! And I mean, this place doesn’t make you feel like you’re an outcast. Andsome of us really
need each other.’ Describing the feeling of safety and supportfrom peers at the agency, another said,‘They’re here to help. They make you feelthat way. That they’re here to help you and not persecute you or put you down.’Participants universally reported feelings of distress and mistreatment withinsociety and valued the agency’s ability to provide safety and to serve as a lifeline.
Survival and Recovery
Many view their attendance in consumer-run programs as a key resource essen-tial to their very survival, a necessary component allowing them to work onthe loftier goals associated with recovery. To the extent that recovery is para-mount to individuals with psychiatric disabilities (Mancini et al., forthcoming),the peer-run agency is seen as an integral stepping stone to the restoration orcreation of a meaningful life. Participants indicated that the agency was the oneplace where the nature and extent of their struggle for survival and recoverywas truly recognized by others. One woman illuminated this vision perfectly:
I think I’m a survivor. I keep saying I’m gonna call into one of those talk shows,you know how now it’s cool to have mental health problems, all the stars havethem. But these
are the stars; these are the people who are surviving every day.
mental health issues. These are the heroes.
The pronounced emphasis on survival, coupled with the allusion to
recovery, appears to be a common element of the consumer-run agencyexperience for many individuals. Although definitions of recovery varied, all
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interview participants had in some way taken responsibility for managementof their own situations. Many reported feeling a sense of freedom and poweras a result. All participants viewed the agency as playing a predominant rolein their pathways to recovery from mental illness. Recovery was defined mostfrequently by participants as effective illness management, avoidance of in-patient hospitalization, and some level of success in the search for personalmeaning. Referring to the agency with a passionate sense of shared owner-ship, one individual said:
I mean, it’s my
place. It would really really really be a big chunk missing out ofmy life if it was taken away. It would be sorta like one of my arms or one ofmy toes was gone. It’s that important. That’s what stands between me and thatclinical stuff, and those doctors. OK? The ones that just want to medicate meall the time, have me come in there, look like a zombie, all this Thorazine inme, and then want to have a conversation. OK? This place is what keeps meaway from all of that.
While not all of the participants shared this emphasis on avoiding the
traditional mental health system, all agreed that without the consumer-runorganization, they would feel adrift and lost in a labyrinthine system. On theverge of tears, one individual told me, ‘If it weren’t for this place . . . (longpause) . . . This is our security. This is where we gain our strength from. Becauseit takes a lot of strength. To go out there and endure.’ Another indicated, ‘Weall need each other. We might disagree, but we need each other. We’re notalways gonna agree on something, but when it comes to actually needing somehelp, this is where we come.’
Respect and Humanity
Participants referred to a perceived sense of respect at the agency as critical intheir decisions to continue attending. Rather than being patronized and treatedas mental health ‘cases’, participants described being treated with basic decencyand genuine respect. Many described this as the first time they had been sotreated, enabling a changed outlook on possibility and hope for recovery.
Particularly for those who reported dissatisfaction and prior negative experi-ences with the traditional mental health system, what they described as the‘humanity’ of their treatment at the peer-run setting was significant. Addition-ally, they indicated that the negative social valuations of being labeled mentallyill or being homeless were rendered less powerful in the peer-run organization.
Participants reported that shared life experiences among members led to
the creation of a non-judgmental environment characterized by comfort andgenuine acceptance. One participant viewed the lack of judgment as fosteringequality among members,‘When you come into the drop-in, basically everyone
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is equal. Have you seen the commercial about the hair club? “I’m the presidentbut I’m also a member.” Well, that’s kind of the situation here.’ Describing theagency, another said, ‘I think [self-help] is saying “you are here, you are notgoing to be ignored. You are a part of this community.” We can have functionallives. This is nothing to be ashamed of, and we do accept what we are.’ Partici-pants also described this aspect of the organizational culture as a necessary philo-sophical foundation upon which other positive outcomes could be based.
Further, the sharing of common experiences and concerns without fear ofjudgment allows participants members to move beyond labels and envisionsuccessful and supportive relationships in the community.
One participant noted,‘People at the drop-in really understand my needs
more than family or other people. Because nobody really gives a shit. They’renot judgmental. Life still goes on, and you get through it together, and you stillgo on.’ Another gentleman said, ‘When I worked here, clients would come inand they were scared and all of a sudden they would just change because ofhow I addressed them, how I talked to them, and how I respected them. Don’tfeel ashamed – this happens to different people too. You’re not the only one.’A third said
You know what really goes on here – everybody’s human. Basically here, there’sno line. There’s no ‘go behind the door and change when you cross over theline’, you know ‘I have to be professional now’. It’s not really like that here.
Everybody’s pretty much straightforward so it makes it easier for communication,I think. It’d be easier to go to a staff member here, easier to communicate, youknow.
There were also study participants who, while acknowledging the
organization’s non-judgmental and respectful environs, reported placing lessemphasis upon that element in their decisions to attend. These individuals wereless personally
connected to the agency, but rather viewed it as a way to obtainconcrete resources and services outside of a demand-based traditional setting.
Accordingly with this shifted emphasis, these participants also reported less useof agency members for interpersonal support, and did not include them in theirsocial networks. This reinforces and illustrates previous quantitative findingsamong consumer-run agency users (Hardiman and Segal, 2003). But for mostof those interviewed, the acceptance, respect, and humanity of the non-judgmental environment was a central defining feature of their experience atthe agency.
Through collective activity and organizational decision-making, participantsreported a sense of shared ownership and increased agency commitment. Almost
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all participants described the agency with terms connoting ownership: ‘myplace’, ‘our place’, ‘our home’. Many spoke using collective rather than indi-vidually oriented language as they shared their experiences. Feelings of owner-ship are intricately tied into the experience of a sense of belonging andself-defined community
at the agency. They seem to approach agency partici-pation not as a means to a singular end (e.g. to get housing or social securitybenefits), but rather as a commitment to sharing with others in the co-creationand ownership of a supportive peer community.
The intrinsically related issues of control and perceived power were fore-
front for many individuals interviewed. Control was most commonly definedas ‘having a say in things’, and was analysed here along both personal and organiz-ational dimensions. Members seek to control their own lives through gaining asense of personal efficacy and ability to influence their own futures, and tocontrol the agency environment through engagement in shared organizationaldecision-making. The data here indicate a strong relationship between thesetwo concepts. The experience of organizational control is an empoweringprocess that bolsters self-confidence, is a source of pride, and often leads toincreased mastery in other key life domains. Many reported that sharing inagency control allowed them to control at least one thing in their chaotic andseemingly uncontrollable lives. Having a say in agency matters thus provides ahumanizing, affirming experience of control and power for persons otherwisedisempowered.
Participants help create a social reality in which they report they are all
equals, share in control, and ultimately are treated as valuable human beingsregardless of fault or limitation. Individuals realize they can interact with others,help peers in need, and co-create supportive environments of their design.
Participants described the experience of shared control and environmental co-creation as nothing short of life changing. As an example, agency rules arecreated by members during ‘community meetings’ and are enforced by allmembers and staff alike. One participant said with visible pride, ‘Clients madethe rules. Clients made every last one of them rules up there.’
Although control emerged as a particularly resonant theme, it must be
noted that for several participants, their experience of organizational control hasdecreased to varying degrees in recent years. As a consequence, they describedfeeling less involved, less committed to, and less in tune with the agency itself.
It is likely that such diminished control is linked with other organizational shifts.
Those interviewed who expressed the greatest dissatisfaction with the lack oforganizational control were also less likely to include agency peers in theirpersonal social networks, perhaps due to the adoption of a disinvested stance atthe agency.
While the ideals of mutual support and collective empowerment that
undergird consumer-run organizations stress shared control, organizational
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reality is often quite different. Maintaining allegiance to a fully democratic modelof agency control is wrought with challenges and can fail without propersupports. Yet consumers voice a strong emphasis on involvement and sharedcontrol as essential to an effective peer-run environment. One participant pas-sionately noted:
A facility cannot be run like it should unless the clients are involved, and heard.
I don’t care what facility you have. Because that’s what makes a facility, and that’swhere you get your respect. You have to be involved too, otherwise they’re notgoing to be involved. When you see like this is happening, you’ll get moreinvolved, and then you’ll get other people to get involved. It’s like a team.
Network of Caring
One of the most useful in vivo themes that emerged was the concept of thepeer-run agency as a ‘network of caring’ for members. Related to the exist-ence of a shared community, the network of caring implies an extension of theegocentrically focused social network concept to a communal or organizationalsetting. It provides a framework with which to view supportive interactions atthe agency. As part of this network, individuals enter into reciprocal relation-ships with agency-involved peers. A common network feature emphasized bystudy participants was stability: the agency is dependable and always available.
For persons without stability in other life areas, the agency represents a rockupon which they can stand.
The experience of community through participation in a network of
caring is a tangible benefit for agency members. One participant used thefollowing words:
When I come here, I’m around people who are in the same status as I am. Weall seem to understand what we’re going through. A lot of us are able to helpeach other. We pass information to each other, like on where the best benefitsare. We also, you know, it’s like a network of caring.
Regardless of status, perceived relative importance of services versus
affective support, or level of satisfaction with organizational issues, participantsreported acceptance as part of a community of like-minded and caring indi-viduals. The resulting network was described in ways suggestive of mutual inter-dependence. One woman with several years of agency participation said, ‘Wesit and talk. I can confide in them and they can confide in me. That’s the beauti-ful thing.’ Another said, ‘You see what you can do for another person. It’s notall about what you can do for yourself. It’s all about what you can do for othersand that’s what the staff is there for.’ For many, having access to others withshared life experiences, facing similar challenges, and who can effectively provide
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support adds up to a novel experience of community
and in some cases family
replacement without which they would be isolated. One gentleman provideda poignant description of his experience:
It’s an emotional community, cause we’re all in the same basis . . . We all under-stand where we’re coming from, we all out here and we try to give each otheras much support, you know, as they possible can within their means. And some-times it’s really heartening to hear someone say, you know what, I saw a placeover here and I got the number for you . . . somebody’s thinking about you ina positive way, it helps with your inside.
For those individuals who are organizationally empowered, the inter-
dependent nature of community at the agency carries added importance.
Additionally, participants indicated that involvement in this network leads to agreater likelihood of making strong peer connections at the agency who canthen serve as sources of interpersonal support via inclusion in one’s personalsocial network. One woman echoed this sentiment, noting, ‘People can com-municate with each other and hold onto each other. Because having friends isvery important to people.’ Another said:
I think I’m more of a special person for them because at least I will listen. Eventhough I have the same problems they have, I will listen to them. I will still listento their problems and see where they come from, and maybe I can help them,or maybe if I listen to them maybe they can tell me something that will saveme, you know what I’m saying?
The central focus of this study was to illuminate personal narratives, lived experi-ences, and meaning attached to participation in a consumer-run mental healthagency. As a uniquely grassroots phenomenon, such agencies are often closed tothe involvement of traditional providers and remain something of a mystery tothose on the outside. Support for peer-run organizations has emerged primarilyfrom advocates and through descriptive studies. There is reason to strengthen ourempirical understandings of this unique service modality and to work towarddeveloping fidelity standards and criteria to ensure maximum utility for indi-viduals in need (Holter et al., 2004; Mead et al., 2001). This exploratory studyadds to the body of knowledge by honoring the importance of actual consumervoices in clarifying user-identified benefits within peer-run settings.
For many participants, the mere existence of consumer-run organiz-
ations is symbolic of meaningful choice and alternatives to traditional mentalhealthcare. Only two of the individuals reported having no current contactwith professional mental health providers. These two individuals also described
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themselves as further along in their recovery from mental illness than mostagency users, suggesting lower levels of actual service need. For the remainingpersons, the agency was a critical corollary to their overall service configur-ation in the mental health system. Such findings imply that consumer-runorganizations need not be viewed as competitive with traditional communitymental health agencies. Successful co-existence at the least, and coalition andcollaboration at higher levels, appear to be feasible goals for both types oforganizations.
Perhaps the most compelling findings in this study relate to shared
‘ownership’, survival and recovery, and the creation of ‘networks of caring’.
These themes resonate clearly with many of the essential structure and process-related features of consumer-provided services as identified by national experts(Holter et al., 2004). Traditional community mental health agencies, often over-burdened, understaffed, and struggling to meet regulatory mandates, simplycannot emphasize these same features in addition to their primary focal areas.
This should not be viewed as a critique of traditional service delivery models,rather a recognition that their strength lies in the provision of concrete servicessuch as case management, medication, group modalities, and referral.
As supported by the participant narratives here, consumer-run agencies
have the flexibility to emphasize different goals: the provision of sanctuary,shelter from the challenges of daily community survival, shared organizational‘ownership’, opportunities to engage in meaningful helping roles, role modelingof successful community integration and recovery, and finally access to peer-based networks of individuals who play a caring and supportive role oftenmissing from the lives of persons with psychiatric disabilities.
The desire to share in collective organizational control can be viewed in
terms of the organizational empowerment concept developed by Segal et al.
(1997). Using this framework, individuals are organizationally empowered whenthey have meaningful input into agency decision-making and feel they are acontrolling part of a functioning whole. Agency members in this study whoparticipate in organizational control and feel that they have a say in what goeson at the agency also reported feeling more satisfaction and increased invest-ment in agency success.
Maintaining commitment to the unique values and principles central to
consumer-run agencies can be challenging. Study participants, particularly thosewith long-term agency involvement, alluded to these challenges. Some expressedconcern about future agency direction and the need to maintain a course con-sistent with the values of peer support and mutual aid. Interestingly, none ofthe participants expressing such concerns had considered leaving, and most indi-cated they would be actively working toward agency change. These findingssuggest the need for future study of organizational maintenance needs for peer-run agencies.
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The most striking differences among participant narratives centered on
the relative balance consumers strike between utilizing the organization as asource of concrete services and resources versus emotionally supportive services.
Though not mutually exclusive, these positions represent the ways in whichindividuals often make sense of agency participation, particularly early in theirinvolvement with the agency. Several participants reporting greater emphasis onconcrete resources were newer to the organization and also expressed higherambivalence. This suggests they were still exploring and building trust in theconsumer-run model itself. From long-term participants, two distinct utilizationpatterns emerged: (1) initially seeking affective support services, personal con-nections, and community but ‘weaning’ themselves eventually to an increasedfocus on concrete resources targeted in specific categories, and (2) initiallyseeking concrete services and resource assistance but eventually shifting to anunexpected focus on mutual support, relationships, and community. Theseopposing pathways through the peer-run agency experience suggest fluid andshifting patterns of need. There may indeed be two distinct groups of poten-tial agency users, each with a unique set of challenges for recruitment and main-tenance of support within the agency environment.
For the minority of participants who reported avoiding emotional con-
nection with peers, it may be that ambivalence toward the agency was fueledby a desire to form a self-identity characterized by success, independence, andmovement away from peer/consumer communities. To view oneself as part ofa peer community defined by disability may represent failure and stagnation tosome, whereas to others it signifies meaning, connection, and support. For theformer group, participation in peer-run organizations may be a step away fromdependence on the mental health system, with its emphasis on illness, treat-ment, and compliance. By construing continued participation as related only tothe receipt of concrete services, they may indeed be allowing for the mainten-ance of a personal identity dominated by independence, success, and distancefrom others with psychiatric disabilities. One participant’s words beautifullycapture this possibility: ‘I come here for things I need, and sure I interact withpeople here. But I wouldn’t be friends with them on the outside. I don’t needthat – I need a place to live, help with benefits. The real
The challenges associated with successful community living for adults withserious psychiatric disabilities are profound. The individuals interviewed forthis study have reported a critically under-explored and frequently devaluedservice modality. The emergent narratives suggest that participants experiencetheir interactions with the consumer-run agency as highly meaningful andintegrated with their daily lives. Ultimately, the most useful aspect of the
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organization appears to be its ability to function as a low-demand, accepting,safe, and sheltering environment while offering opportunities for genuinehuman connection, shared ownership, and community. Finally, access to andhaving the chance to develop otherwise unavailable peer-focused ‘networks ofcaring’ was paramount to most participants. Such networks may provide thecritical links between formal service utilization and supported socialization(Davidson et al., 2001) or friendship (Boydell et al., 2002).
Although organizational context appears to be an important factor affect-
ing individual experience within programs, the data described here offer trans-ferability to other consumer-run settings. With drop-in centers among the mostcommon consumer-operated configurations in mental health, it is reasonable toconclude that this study offers relevant knowledge for those seeking to under-stand similar drop-in settings. Although less directly, it is also appropriate todraw links with other consumer-run organizations providing a larger scope ofservices, due to common factors such as choice, flexibility, and shared govern-ance.
It can be argued that the development and utilization of natural supports
within community settings is among the most critical needs for adults with psy-chiatric disabilities. Without social support, independent living is often amisnomer, more accurately characterized by social isolation and dependence onan outpatient mental health system. Community mental health agencies, socialworkers, and other providers seeking to assist consumers in genuine communitytransition should take note of these findings. While traditional providers havea wealth of expertise in clinical treatment and intervention modalities, encour-aging natural support is a far more complex and often ignored challenge.
Consumer-run agencies are but one example of the increasing use of
peer support services in mental health. Although existing within the socialservice sector, these agencies represent for many individuals a more fluid inte-gration of the community, social, and professional realms. Viewed as such, theirpotential benefits should be explored vigorously by mental health professionalsseeking to maximize community integration for consumers. As an emergingpractice modality that delivers on social work’s commitment to client-centeredprinciples, consumer-run services should also be accorded increased researchattention and focus.
The author wishes to gratefully acknowledge Steven Segal and Patricia Morgan for their
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Eric R. Hardiman
, PhD, is Assistant Professor, School of Social Welfare, Uni-
versity at Albany, SUNY. He conducts research in peer support, consumer-
delivered services, psychiatric recovery and housing. He is currently finishing a
qualitative study of peer-delivered disaster relief/support services in New York
City following September 11, 2001. He received his PhD from the University
of California, Berkeley.
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