Dr. Swarbrick is Assistant Professor, University of Medicine and Dentistry of New Jersey, School of Health Related Professions, Department of Psychiatric Rehabilitation, Newark, and Director, Collaborative Support Programs of New Jersey, Institute for Wellness and Recovery Initiatives, Freehold, New Jersey; Dr. Schmidt is Associate Director and Clinical Assistant Professor, Drexel University, College of Nursing and Health Professions, Behavioral Health Counseling, Philadelphia, Pennsylvania; and Dr. Pratt is Professor and Director of Graduate Education in Psychiatric Rehabilitation, University of Medicine and Dentistry of New Jersey, School of Health Related Professions, Department of Psychiatric Rehabilitation and Counseling Professions, Scotch Plains, New Jersey.
The authors disclose that they have no significant financial interests in any product or class of products discussed directly or indirectly in this activity, including research support.
Address correspondence to Margaret Swarbrick, PhD, OTR, CPRP, Director, Collaborative Support Programs of New Jersey, Institute for Wellness and Recovery Initiatives, 8 Spring Street, Freehold, NJ 07728; e-mail: email@example.com.
Mental health service recipients typically have had limited options, choices, and involvement in planning both their individual services and the service system as a whole. The traditional mental health care system has often relied on the doctrine of parens patriae, acting as a surrogate decision maker for people who experience mental illness (Carling, 1995; Goffman, 1961). Members of the “consumer movement” view this doctrine as paternalistic and strongly object to the lack of opportunities for meaningful participation in decision making and policy planning (Campbell, 1997; Chamberlin & Rogers, 1990).
Consequently, many individuals diagnosed with mental illness participate in self-help services. One way to offer these services is through a self-help center, which provides a comfortable place where people can gather. Most of these centers are led, managed, and run by mental health consumers. A model for these programs has emerged called consumer-operated self-help centers or COSHCs (Swarbrick, 2005, 2007). These centers serve as either a complement to conventional mental health services or an alternative service that focuses on the social and emotional needs of the participants (Van Tosh & del Vecchio, 2000). Centers are either funded with state dollars, as is the case in New Jersey, or through private foundations or member dues.
COSHCs are supportive social settings where consumers can connect with their peers, gain practical assistance from one another, relax, and experience freedom in a family-like environment without an imposed structure (Swarbrick, 2005). COSHCs evolved from the less formal drop-in center model and have grown to include an expanded focus on wellness, recovery, advocacy, and peer support (Swarbrick, 2005, 2007). While traditional community mental health centers tend to focus on alleviating problems and reducing symptoms, COSHC services strive to foster socialization, empowerment, autonomy, and satisfaction with services (Rogers, Chamberlin, Ellison, & Crean, 1997; Segal, Redman, & Silverman, 2000; Solomon, 2004). In addition, the President’s New Freedom Commission on Mental Health (2003) report promoted consumer-operated services as an emerging evidence-based practice that has the potential to create a mental health system focused on recovery.
Empowerment and Satisfaction
The activities of self-governance and self-help found within COSHCs were originally conceived as a means to regain power and control from a system thought to oppress and do more harm than good (Chamberlin, 1978; Van Tosh, Ralph, & Campbell, 2000). The idea that people who are empowered would thrive and recover from serious mental illness has been an important theoretical foundation for the continued expansion of self-help support. An empowered member has decision-making ability and authority, a range of options from which to choose, and access to information (Chamberlin, 1997). COSHCs offer many members active roles in program planning and day-to-day operations (Swarbrick, 2005). The reciprocal social environment itself promotes member empowerment (Rappaport, 1987; Zimmerman & Rappaport, 1988); indeed, many COSHCs report that members feel empowered (Clay, 2005).
Because dissatisfaction with traditional mental health services was an impetus for the development of the COSHC model, the level of satisfaction reported by participants is an important source of information about the capacity of COSHCs to achieve their mission (Campbell, 1997; Chamberlin, 1978). Intuitively, one would expect that a satisfied “customer” would keep coming back and thus be more inclined to benefit from participation. But what affects satisfaction within these centers?
Descriptive reports of program characteristics and service use suggest that COSHCs offer a unique service within a unique environment (Chamberlin, Rogers, & Ellison, 1996; Davidson et al., 1999; Segal, Hardiman, & Hodges, 2002; Segal & Silverman, 2002). COSHCs offer a tolerant, flexible, and supportive environment that is oriented toward mutual learning, independence, and self-understanding. Satisfaction with COSHCs has been shown to be positively correlated with these qualities as well as with an emphasis on mutual learning and de-emphasis on the open expression of anger (Mowbray & Tan, 1993). Thus, these centers provide a social setting in which mental health consumers form friendships, offer mutual support, and feel empowered within an environment of peers (Swarbrick, 2005, 2007).
Moos (2002) offered a conceptualization of social settings, which has been applied to self-help environments and which supports the descriptive data presented above. He proposed that social environments can be understood in terms of:
- The cohesiveness of members and the quality of their interpersonal relationships—the relationship dimension.
- The relative value placed on personal growth and activities oriented toward personal development—the personal growth dimension.
- The degree of structure and control in the setting—the systems maintenance and change dimension.
Members of supportive, cohesive, and well-organized self-help groups tend to report higher satisfaction (Moos, 1994). These social environment dimensions have been related to individual outcomes of participants in substance abuse and in parenting self-help groups (Moos, Finney, & Maude-Griffin, 1993).
There has been very little systematic investigation of how environmental factors relate to key COSHC participant outcomes. Given the desirability of consumer satisfaction with services and an increased sense of empowerment, it is vitally important to gain an understanding of the characteristics of the COSHC environment that most closely relate to these outcomes. If COSHCs are to have a long-lasting and positive influence on the lives of people with mental illness, we need to know more about how to optimize these innovative places to encourage participation and achieve desired outcomes. Thus, this study explored the relationships among characteristics of the social environment as perceived by the participants, participants’ self-report of empowerment, satisfaction with COSHC services, and amount of participation (length of involvement and attendance rate).
The following questions were posed:
- What are the characteristics of people served by COSHCs?
- To what degree is there a relationship between……level of empowerment and participants’ perception of the self-help environment?…level of empowerment and participants’ amount of participation?…level of satisfaction with services and participants’ perception of the self-help environment?…level of satisfaction with services and participants’ amount of participation?
The COSHCs used for the study were located throughout New Jersey and sponsored by Collaborative Support Programs of New Jersey (CSP-NJ). CSP-NJ (2005) is funded by the State of New Jersey in accordance with the Self-Help Center Policy and Procedure Guideline, which, along with leadership training materials, is available from the first author. The guideline is a manual for operating a safe, accessible, and empowering social environment for COSHC members (Swarbrick, 2005; Swarbrick & Duffy, 2000). All COSHC programs in New Jersey must comply with this guideline, which requires centers to operate on principles of shared governance and focus on ability, as opposed to disability (Swarbrick, 2005). Organizational decisions, including hours of operation and program planning within budgetary constraints, are shared among all members. Members are responsible for following the rules and regulations established by the membership and participate at a level they determine is comfortable for them (CSP-NJ, 2005). Members can assume a leadership role as a COSHC facilitator, either on a volunteer or paid (stipend) basis. Facilitators open and close the center; meet, greet, and support members; plan and run groups and activities; and transport members in the center van. Centers are open on weekends, evenings, and holidays, which are often the loneliest times for mental health consumers. In New Jersey, center membership is free, voluntary, and time unlimited (Swarbrick, 2005).
All 22 CSP-NJ self-help centers were invited to participate in the study. Thirteen sites expressed interest in recruiting participants from among their members. These sites were sent a recruitment announcement that was posted in a prominent location. Verbal appeals for participant volunteers were also made at membership meetings. The principal investigator (M.S.) and two research assistants visited each of the interested sites on two occasions. During the visit, they met with a group of interested consumers to review eligibility criteria. Eligible participants received a copy of the project summary statement and then a survey packet if they agreed to participate. Study participants were not compensated for completing the survey.
Consumer participants were adults age 18 and older who self-reported that they currently, or at some time in the past, had been diagnosed with a mental disorder (including, but not limited to, schizophrenia, schizoaffective disorders, and mood disorders). Participants who attended the COSHC at least 12 times over a 3-month period were included. Participants were required, by self-report, to have the ability to read and write English at the 8th-grade level.
The survey packet used in this study included four measures: the Self-Help Agency Satisfaction Scale (SHASS) (Segal et al., 2000), the Making Decisions Empowerment Scale (MDES) (Rogers et al., 1997), a self-help center member survey, and the Group Environment Scale (GES) (Moos, 2002). At the end of the survey, three open-ended questions were included to gather qualitative data regarding participants’ experiences. The survey was administered by a trained assistant who was also a consumer. The entire survey took up to 1 hour to complete.
Self-Help Agency Satisfaction Scale. The SHASS is an 11-item self-report measure of satisfaction (Segal et al., 2000). Five items constitute an involvement sub-scale (i.e., involvement in the helping process; the autonomy dimension), and six items constitute the services subscale (the support dimension). The items were rated using a 5-point Likert scale. The total SHASS has a test-retest Cronbach’s alpha coefficient of 0.61 (Segal et al., 2000); in the current study, the Cronbach’s alpha coefficient was 0.92.
Making Decisions Empowerment Scale. The MDES is a 28-item tool that uses a 4-point Likert scale to measure the personal construct of empowerment as defined by consumers of mental health services. The scale defines empowerment as having decision-making power, a range of options from which to choose, and access to information (Chamberlin, 1997; Rogers et al., 1997). Rogers et al. (1997) reported internal consistency of the total scale (Cronbach’s alpha coefficient = 0.82). The analysis for this study yielded a Cronbach’s alpha coefficient of 0.81.
Self-Help Center Member Survey. A self-report survey was designed to gather information on members’ demographic characteristics (age, ethnicity, gender, education, and marital status) and other data (diagnosis, role with center, length of involvement with center and attendance rate per week, living arrangement, and other services used during the past year).
Group Environment Scale. The GES (Moos, 2002) is composed of 90 true-false items and measures aspects of the social environment. The GES has been used for program evaluation research in a variety of settings, including member-run self-help groups and drop-in centers (Moos, 2002; Toro, Rappaport, & Seideman, 1987). The scale measures three broad dimensions: relationships, personal growth, and system maintenance and change.
Participant Demographics and Service Use
Participant demographic data appear in the Table. A total of 144 participants ranging in age from 18 to 75 (mean age = 45) participated in this study. In terms of race/ethnicity, a substantial number of the participants identified themselves as Caucasian (64%), similar to some consumer-operated service samples (Chamberlin et al., 1996) but different from other samples with a predominantly African American population (Segal, Silverman, & Temkin, 1995). In this study, African American participants comprised almost one third of the sample (27%), Hispanic participants comprised 4%, and the remaining identified themselves as Asian/Pacific Islander (1%) and other (1%).
Table: Personal Characteristics of Self-Help Center Study Participants (N = 144)
More than one third of the participants (38%) graduated from or attended some college, and 75% had a high school diploma, GED, or above. A majority of the participants were single and never married (56%), a common characteristic of COSHC participants (Segal et al., 2002).
Unlike other studies that reported homeless or precarious living situation rates of 46% to 54% (Segal et al., 2002), the majority of participants (77%) lived in stable, independent housing. The majority of participants listed government subsidy as their primary income, with 49% receiving Social Security Disability Insurance or Supplemental Security Income benefits and 32% receiving Social Security benefits in addition to income from part-time employment.
Sixty-three percent of the participants were involved with the self-help center between 3 months and 3 years, 27% were involved from 4 to 9 years, and 10% were involved for more than 10 years. Fifty-seven percent of the respondents reported that they attend the center 1 to 3 days per week (n = 83) and 42% said they attend the center 4 to 7 days per week (n = 61). Approximately half of the participants in this study held some kind of facilitator leadership role at their center in addition to being a member.
Many participants (78%) had an Axis I diagnosis of serious mental illness. Survey respondents reported a variety of primary diagnoses, including schizophrenia (36%), depressive disorder (22%), bipolar disorder (20%), substance abuse/dependence (5%), and other (17%). Similar to other studies (e.g., Chamberlin et al., 1996; Kessler, Mickelson, & Zhao, 1997; Segal et al., 2002), many of the participants made use of additional mental health services and supports. The majority (73%) reported visiting a mental health counselor or therapist during the past year, and 79% reported taking medication to manage a psychiatric condition. Nearly all of these additional services were provided by independent agencies unaffiliated with the self-help centers. Referrals to the self-help centers came from multiple sources, including friends (50%); mental health professionals (28%); and family members, brochures, or other sources (26%).
Pearson’s correlations assessing the relationship between members’ perception of the COSHC social environment and empowerment were small, and only the interpersonal relationships subscale reached significance (r = 0.154, df = 142, p < 0.05). However, empowerment scores were significantly correlated with years of membership (r = 0.227, p < 0.01) and days per week of attendance (r = 0.235, p < 0.01). Each of the variables that were significantly correlated with empowerment were then entered into a stepwise regression to determine their overall and relative contribution to the correlation value. Only length of involvement and attendance rate contributed significantly (R = 0.297, [F(1, 141)] = 5.063, p < 0.05) and together accounted for 9% of the variance in empowerment scores.
Significant positive correlations were found between satisfaction and each of the three social environment scales: interpersonal relationships (r = 0.53, df = 142, p < 0.01), personal growth (r = 0.39, df = 142, p < 0.01), and systems maintenance and change (r = 0.50, df = 142, p < 0.01). A stepwise regression to determine the relative contribution of these scales resulted in the exclusion of the personal growth dimension and accounted for 37% of the variance in satisfaction scores (R = 0.61, [F(1, 141)] = 19.78, p < 0.05). The interpersonal relationships dimension explained the most variance (28%), with the systems dimension accounting for the other 9%. There were no significant correlations between satisfaction and length of involvement or attendance rate.
Discussion and Implications
This exploratory study was designed to measure factors related to the empowerment and satisfaction of participants involved in New Jersey COSHCs. Several correlates of empowerment and satisfaction with services were found. The implications of these findings are discussed below.
With a mean of 2.95 on the 4-point MDES, the participants of this study can be considered a relatively empowered group. Although there was not a lot of variance in scores among the participants, empowerment scores did increase significantly as participation levels increased. In other words, members who felt empowered tended to have higher levels of participation, whereas members who did not feel as empowered participated less (or stopped coming). This finding is consistent with Zimmerman and Rappaport (1988), who found that greater levels of participation were associated with empowerment.
Although we cannot be sure whether participation caused increases in empowerment or whether empowered people are more likely to participate in COSHCs in the first place, a number of COSHC principles and practices likely contribute to the development of empowerment. Self-help centers are participant driven and foster active involvement of both consumer leaders and members. Center activities offer numerous opportunities to voice opinions and make decisions. In responding positively to these opportunities, participants might become motivated to attend more often and further enhance a sense of empowerment. Rappaport (1987) suggested that social environments small enough to provide meaningful roles and responsibilities for all members and large enough to obtain resources for ongoing operations are likely to create conditions that contribute to empowerment. COSHCs, by structure and process, do provide opportunities for all participants to assume meaningful roles and contribute to the day-to-day operations of the center.
Self-help centers also provide choice in terms of the individual’s level of involvement. In contrast to traditional programs that dictate attendance frequency (often based on fiscal reimbursement incentives for the organization/agency), self-help center participants can choose to attend/participate or not as they desire.
When people are more satisfied with services, they continue to participate in them and thus avail themselves of opportunities for growth and change. Environmental factors, as measured in this study, significantly affect how satisfied participants are with their self-help center. Results indicate that people are more satisfied with their COSHC when relationships among members are positive and helpful, when activities foster personal growth, and when there is a balance between systems maintenance and change. Consequently, it is important for COSHC leadership to have skills in promoting and maintaining an organizational culture that reflects these qualities. A training program to help COSHC leaders develop social environments that foster satisfaction is essential. Content of the training should generally focus on communication skills, shared leadership principles, and group process. Ongoing mentoring or coaching may also provide COSHC leaders in the self-help center arena with additional guidance as needed.
Study participants were more satisfied in an environment where they could form social relationships, feel connected to peers, and are encouraged to express their feelings. Training should help leaders provide a welcoming environment for members and promote cohesion among members through structured group activities. Leaders could also learn about how to create comfortable and safe settings that facilitate involvement in the center’s activities and operations.
Study participants were more satisfied with an environment that was orderly and predictable without being stagnant. Thus, COSHC leaders need to find a balance between enforcing rules and directing the center activities, while encouraging member feedback, involving members in decision making, and promoting diversity and change in center functioning. Leaders should be trained to conduct regularly scheduled business meetings that provide order and organization, and also facilitate members’ ideas for change and improvement in center functions.
Finally, study participants were more satisfied with a COSHC that helped them grow as individuals. Leaders should be trained to offer group and individual activities that foster self-discovery, where members can learn new things about themselves and avail themselves of resources that help them in their personal recovery.
The overall findings of this study contribute to an understanding of the COSHC model. Mental health consumers, professionals, and researchers are encouraged to use these findings to inform implementation, evaluation, and refinement of the COSHC model. To improve causal inference, future research could use a longitudinal design to examine the relationship between involvement and empowerment over time, as well as explore additional relationships between social environment factors and satisfaction.
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Personal Characteristics of Self-Help Center Study Participants (N = 144)
| Depressive disorder
| Bipolar disorder
| Substance abuse/dependence
| Caucasian (non-Hispanic)
| African American
| Native American
| Asian/Pacific Islander
| Single, never married
| Living with significant other
| House/apartment (alone)
| House/apartment (with others)
| Boarding home
| Others’ place
| Group home