Opportunities and barriers to empowering people with severe mental Illness through participation in treatment planning.
Participation in treatment planning can be one means of empowering
clients. However, significant barriers exist to empowering people with
severe mental illness through treatment planning. This qualitative study
reviewed documents and conducted focus groups with clients and staff of
a public psychiatric hospital to identify barriers to empowerment and
the conditions that must be present for client empowerment to occur
through treatment planning. The conditions for empowerment were based on
both psychological and organizational factors. For empowerment to occur,
clients need psychiatric stability and decision-making skills.
Organizations promote empowerment by ensuring that clinical staff have
the time to involve clients in treatment planning, promoting staff
attitudes that are respectful of clients' ability to participate in
treatment planning, providing clients with a range of treatment options,
designing programs that have a strong philosophical commitment to client
empowerment, and implementing programs pro perly.
Key words: empowerment; mental illness; psychiatric hospitals; treatment planning
Social case work
Mentally ill (Care and treatment)
Linhorst, Donald M.
|Publication:||Name: Social Work Publisher: National Association of Social Workers Audience: Academic Format: Magazine/Journal Subject: Sociology and social work Copyright: COPYRIGHT 2002 National Association of Social Workers ISSN: 0037-8046|
|Issue:||Date: Oct, 2002 Source Volume: 47 Source Issue: 4|
|Geographic:||Geographic Scope: New York Geographic Code: 1U2NY New York|
Client empowerment is fundamental to social work practice (Dubois
& Miley, 1999; Lee, 1994). Historically people with severe mental
illness have lacked empowerment (Carling, 1995; Goffman, 1961). One way
to empower this group is through participation in treatment planning.
However, is it possible for social workers to empower all people with
mental illness through participation in treatment planning? What
conditions must be present for empowerment to occur through treatment
planning? We argue that the achievement of empowerment through treatment
planning is based on both psychological and organizational factors. That
is, for empowerment to occur, people with severe mental illness need a
minimal level of psychiatric stability and decision-making skills, as
well as an organizational culture that promotes shared decision making
and provides the resources required for empowerment.
Empowerment has been defined in many ways but typically emphasizes client choice and control. For example, Staples (1990) defined empowerment as "the ongoing capacity of individuals or groups to act on their own behalf to achieve a greater measure of control over their lives and destinies" (pp. 30-31). Empowerment can refer to both an outcome and a process (Kieffer, 1984; McLean, 1995; Rappaport, 1987; Salzer, 1997; Staples). From this viewpoint, a client is empowered not only by the outcomes of the decisions he or she makes, but also by being an active participant in the decision-making process. Staples described this empowerment process as "a continuing development involving many changes whereby an individual or group is able to strengthen and exercise the ability to act so as to gain greater control and mastery over life. It is both thought and action, which is dynamic and constantly evolving" (p. 38). Benefits clients derive from empowerment can include increased self-confidence, self-responsibility, and self-efficacy, and an improved quality of life (Pinderhughes, 1983; Salzer; Smith & Ford, 1986; Wilson, 1996).
Avenues for empowering people with severe mental illness can include participating in self-help groups or consumer-run programs; serving on planning committees, advisory boards, or consumer councils in mental health organizations; and contributing to program evaluation efforts (Carling, 1995; Davidson et al., 1999; Linhorst & Eckert, 2001; Linhorst, Eckert, Hamilton, & Young, 2001). Participation in treatment planning also can be empowering when people with mental illness choose their own goals and the treatment activities that best support the goals they have selected for themselves. Choice is now considered fundamental to the recovery process for this group (Bassman, 1997). People with severe mental illness who are able to actively participate in designing their own treatment plans are more likely to have an improved self-image, to be satisfied with the services they receive, and to reach their treatment goals (Brown & Golderberg, 1993; Chinman et al., 1999; Holland, Knoick, Buffum, Smith, & Petchers, 1981) .
Despite these potential benefits, substantial barriers exist to empowering people with mental illness through treatment planning. The most obvious barrier is the severity of mental illness. There is substantial documentation supporting the fact that mental illness renders some people incapable of processing information, weighing choices, and making informed decisions about their treatment (Hoge & Feucht-Haviar, 1995; Husted, 1999; Rosenfeld & Turkheimer, 1995). Chinman et al. (1999) found other barriers in a survey of staff and clients of a community-based mental health program. Staff specified clients' disability, noncompliance, and lack of interest in participation as the three greatest barriers; clients indicated lack of staff time devoted to treatment planning, their own lack of knowledge about how to do treatment planning, and uncertainty about how setting goals would help them as the three greatest barriers. According to Salzer (1997), professional centrism, or the belief that staff should make treatmen t decisions for clients because of staff skill and training, was a major barrier. Starkey and Leadholm (1997) stated that lack of staff time for treatment planning and staff's desire to take care of patients limited empowerment. Finally, Surles (1994) considered staff's belief in the need to protect clients from making poor choices and clients' lack of resource options to be barriers.
We chose a public psychiatric hospital that provides long-term care and treatment to people with severe mental illness as the setting in which to study empowerment through treatment planning. During the early 1990s this facility adopted psychosocial rehabilitation because it is the primary model for working with its clients. This is a strengths-based approach that emphasizes clients' self-determination and participation in all aspects of the rehabilitation process, including treatment planning (Cook & Hoffschmidt, 1993; Pratt, Gill, Barrett, & Roberts, 1999). This setting allowed us to focus on clients who present the greatest challenge to empowerment because of the severity of their mental illness and their residence in an institutional setting.
This article discusses expectations for client involvement in treatment planning derived from facility documents; explores the extent to which clients were empowered in comparison to stated expectations; and examines barriers to client participation in treatment planning that clients and staff indicated in focus groups. It also discusses conditions that must be present for dents with severe mental illness to be empowered through treatment planning and considers implications for social work.
The site of the study was one of four long-term psychiatric hospitals operated by the Missouri Department of Mental Health. It includes 212 beds, (four 25-bed hospital wards and 14 eight-bed cottages) located on facility grounds adjacent to the hospital building. The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) accredits the facility. Typically, about two-thirds of clients are diagnosed with schizophrenia, with most others having affective or organic disorders. Secondary diagnoses are prevalent, including personality disorder (50 percent), substance abuse (50 percent), and mental retardation or borderline intellectual functioning (15 percent). About 80 percent of clients are male, 60 percent are African American, and average age is about 44 years. The average length of hospitalization is approximately six years. Missouri criminal courts commit about 80 percent of the clients, 70 percent of whom have been adjudicated as not guilty by reason of insanity (NGRI) and 10 percent found i ncompetent to stand trial. The remaining 20 percent are nonforensic and are committed voluntarily by their legal guardians. To be discharged from the facility, NGRI clients must meet criteria specified in Missouri statutes that emphasize public safety and be granted a conditional release from a circuit court judge (Linhorst & Dirks-Linhorst, 1999).
The facility operates four residential treatment programs. One program, consisting of 10 eight-bed cottages, uses a psychiatric rehabilitation approach with clients who are psychiatrically stable, have the capacity to participate actively in treatment planning, and present a low security risk. In presenting our findings, we refer to this as the cottage program. The other three are hospital programs, although two have step-down cottages. One hospital program consists of two 25-bed wards and two eight-bed cottages and uses a social learning, behavior modification approach with clients with the most severe psychiatric impairments. Another hospital program consists of one 25-bed ward and two eight-bed cottages and uses a cognitive--behavioral approach with clients who are psychiatrically stable but engage in behaviors associated with personality disorders that prevent their release from the facility. The third hospital program consists of one 25-bed ward and primarily is for forensic clients who have been committ ed by the criminal courts for restoration of competency to stand trial or for inpatient pretrial psychiatric evaluations.
Operational Definitions of Empowerment and Treatment Planning
On the basis of Chamberlin's (1997) research on a definition of empowerment of people with mental illness, we operationally defined empowerment as having decision-making power, a range of options from which to choose, and access to information. We defined treatment planning as the process whereby clients' life goals are explored and established, goals are prioritized and then written as short-term and long-term treatment and rehabilitation goals, and treatment and rehabilitation activities are selected to support goal achievement. According to these definitions, clients are empowered in treatment planning when they make decisions about, or at least have substantial input into selection of, treatment goals that support their life goals (that is, to live in one's own apartment, to obtain a college education), when they have options for activities that support their self-selected goals, and when they have enough information to make meaningful choices and weigh the consequences of their actions. Clients would not be empowered through treatment planning when, for example, staff set goals for clients, when treatment activities are unrelated to clients' goals, or when staff do not provide clients with understandable information needed to develop goals and select treatment activities.
Document reviews and focus groups provided data for this qualitative study. We reviewed three sets of documents to determine the level of empowerment in treatment planning that should be expected from facility clients. These included JCAHO standards, the facility's mission--vision--value statements and policies, and program materials. Focus groups were held with clients and staff to determine the level of participation clients had in treatment planning and barriers to empowerment. The use of focus groups has been found to be effective with people with mental illness and can serve as one means to empower clients (Race, Hotch, & Packer, 1994; Richter, Bottenberg, & Roberto, 1991). Focus groups were conducted with 17 groups of clients and 15 groups of staff between October and December 1998. Seventy-two of 208 clients (35 percent) present in the facility during this time participated in the study, including some from each of the four programs. Among staff, 114 of 389 (29 percent) participated, including upper-ma nagement staff (8 of 8, 100 percent), middle-management staff (26 of 34, or 76 percent), professional clinical staff (48 of 95, or 51 percent) and paraprofessional clinical staff (32 of 252, or 13 percent). Participation was voluntary, and clients and staff could leave the interviews at any time. Clients were paid three dollars for participating in the focus groups, an amount set by the facility's consumer council; staff were not paid.
A moderator led the focus group discussions using a semistructured interview schedule that we developed with input from clients and staff. Lengths of group sessions ranged from 30 minutes to one hour, with most groups lasting the full hour. To increase openness and enhance validity, staff members were not allowed to be present during the clients' focus groups. In promoting open discussion with staff, separate interviews were held with professional clinical staff, paraprofessional clinical staff, middle managers, and upper management. To maintain confidentiality, the names of participating clients and staff were not recorded during the interviews, and presentation of the responses by clients and clinical staff was grouped into two categories: hospital and cottage programs.
We all discussed the responses from the focus groups and integrated the findings into themes or categories to determine the level of client involvement in treatment planning and barriers to empowerment. We then compared the actual level of client participation in treatment planning with the expected level derived from the document review to ascertain any discrepancies. In presenting the focus group results, we refer to the number of groups in which the opinion was raised, not the number of individuals who raised the issues. In our judgment, when single opinions were offered, they were usually shared by most, if not all, other participants in that focus group. If multiple opinions were offered in a single focus group, each opinion was noted.
Expectations for Client Empowerment
We found that the facility formally embraced the components of empowerment. First, the facility's vision and value statements supported client empowerment. The vision statement stated "Rehabilitation through choices: People with mental illness will make meaningful choices about how they socialize, live, work, and learn." Three of the facility's values encouraged empowerment:
* "Strengths: We value people's ability to direct their lives....
* Dignity: We value people's rights ... to be empowered to act on their own behalf
* Accessibility: We support an array of rehabilitative services ... that supports and maximizes the range of available options." (St. Louis Psychiatric Rehabilitation Center, 1997a)
Furthermore, in documents distributed to clients and family members at the time of admission, staff responsibilities included: "to treat you with dignity, courtesy, and respect; to include you in any decisions involving treatment, rehabilitation and discharge planning; to extend to you the maximum amount of control possible over your life and your affairs" (St. Louis Psychiatric Rehabilitation Center, 1997b). Finally, JCAHO standards required that clients be involved in all aspects of their care, including giving informed consent, making care decisions, and resolving dilemmas about care decisions (Joint Commission on the Accreditation of Healthcare Organizations, 1997).
Operationalization of these facility-wide guidelines varied considerably at the program level. The cottage program was much more likely to explicitly address client empowerment in treatment planning. The cottage program's statement of philosophy included "individuals should be allowed to make decisions and live with the consequences of the decision, within the framework of the Individualized Treatment Rehabilitation Plan and applicable rules and regulations." Formal policies in the cottage program sought to support this philosophy. For example, one required the case manager to meet with the client one week before the planning meeting to "ask the client for his/her treatment/rehabilitation choices." (St. Louis Psychiatric Rehabilitation Center, 1997c). This policy also directed the case manager to ensure that the client was present at the meeting when the plan was written and, if the client was unavailable, to discuss the completed plan with him or her.
Unlike the cottage program, we found no specific references to client participation in treatment planning in the documents that we reviewed from the three hospital programs. However, each hospital program was designed to increase clients' capacity for decision making. Without this ability, client empowerment is not possible. The cognitive--behavioral program used techniques to try to reduce "thinking errors" that have led clients with personality disorders to make poor choices. The social learning program used behavior modification to try to shape clients' choices until they progressed to a point where they possessed the internal processes to make informed decisions on their own. Finally, the forensic evaluation program used psychoeducational approaches to try to stabilize clients' mental illness and improve their understanding of the judicial system to resume their criminal proceedings.
Overall, participants in the client and staff focus groups perceived that cottage program clients had greater participation in treatment planning than clients from the hospital programs. Clients from seven of eight cottage program groups indicated that clients and staff completed the plan together. In the other group, clients indicated that the team routinely wrote the plan and gave it to them to sign. Professional and paraprofessional staff from the cottage program concurred that clients and staff completed the plan together, although some staff indicated that actual client input varied from cottage to cottage, even though clients and staff generally met together.
Clients from the three hospital programs indicated that the usual treatment planning process was for staff to write the treatment plans and then invite clients to the meetings to explain the contents of the plans to them. Professional and paraprofessional staff from each of the hospital groups concurred that this was the customary practice, although they said exceptions were made for individual clients. Staff from the upper- and middle-management groups overestimated the degree of client participation. Staff from the upper-management group believed the completion of plans without clients present occurred in one of the three hospital programs, whereas the middle-management group indicated that it occurred in all three.
In most of the client groups and in all of the staff groups, participants indicated that clients' choice of treatment activities was limited because of the existence of mandatory activities that were unique to each program. The same groups of clients and staff indicated that clients had some choice of activities, which usually were leisure and recreational. Clients from one of eight cottage program groups and two of seven hospital groups indicated they had no choice, even with leisure and recreational activities.
Because choice was limited because of required core activities, questions about information useful for making choices were minimally addressed in the focus groups. Clients in four cottage program groups indicated they had enough information about treatment options to make informed decisions. Clients in two of these four groups, in addition to the upper-management group and one of the middle-management groups, indicated that the cottage program had developed a catalog of treatment activities to provide information to clients, although staff in one of the groups of professional staff indicated that not all clients got to see the catalog. Also, staff in one meeting of professional staff from the cottage program believed that information provided to clients about activities varied considerably by the particular staff member working with clients. Finally, staff from two of the management groups and one of the professional groups from the hospital programs believed that clients needed more information about activit ies, as well as the rationale for them and the consequences of choosing not to participate in them.
Quality of Client Participation
Clients' presence during planning meetings does not necessarily mean they made the decisions about treatment goals and activities. To obtain some indirect information about the quality of clients' participation, clients and staff were asked how resolution occurred when clients disagreed with staff about the contents of their plans. In the majority of cottage program groups, clients indicated they might be able to negotiate with the staff on noncore activities. Clients in two other cottage program groups and in all the hospital groups said they felt pressured to sign the treatment plan when they disagreed with its contents. Most typically, staff perceived that clients negotiated with them if clients disagreed with the contents of their treatment plans. None of the staff groups indicated that they believed that clients were pressured to sign the treatment plan.
Barriers to Client Participation
Clients and staff emphasized six barriers to maximizing client empowerment in treatment planning. Some barriers were psychological--that is, they were related to clients' characteristics. Participants in all staff groups and in the majority of client groups believed that the severity of the mental illness of some clients prevented them from meaningfully participating in treatment planning. Staff indicated that clients' thought disorders, inability to concentrate, or personality disorders prevented them from setting realistic goals, processing information about treatment options, and making meaningful choices about activities. Less frequently three client groups and four staff groups indicated that clients may refuse to participate in the process, either because clients believed it was not a meaningful process or because clients appeared to lack the motivation to leave the facility.
Other barriers were related to the structure, ideology, and culture of the organization. First, almost all of the client and staff groups identified mandatory core treatment activities as limiting empowerment. This requirement reduced the number of activities from which clients could choose. Second, most of the client and professional and paraprofessional staff groups cited insufficient numbers of staff to escort clients to and from activities as a barrier. Some activities that were scheduled had to be cancelled because clients could not get to them, and some clients were unable to attend activities although they were held and space was available. Third, most of the staff groups indicated that being adjudicated NGRI limited empowerment by requiring clients to participate in particular activities by placing the release authority with the courts and not clients or facility staff; by limiting their ability to participate in activities in the community; and by other means. Only two client groups cited legal statu s as a barrier. Fourth, the majority of staff and client groups cited lack of choice of activities as a barrier. This resulted from not offering a variety of activities, not offering particular activities often enough, and offering them at times when many clients could not participate in them. Finally, most staff groups, with the exception of paraprofessional staff, identified the lack of staff time allocated to treatment planning as a barrier. They reported that it took considerably longer to write plans with clients present than it did to write them and then bring clients in to discuss them. Clients did not recognize this as a barrier.
Less frequently reported by clients and staff groups were three other organizational barriers. Two client groups and five staff groups believed that opposition to client empowerment among some staff was a barrier. In some cases, they described the opposition as not wanting to give up power, and others stated some staff did not believe clients were capable of providing meaningful input. Six staff groups, but no client groups, considered the level systems used in the hospital programs as limiting client empowerment. The level system has specific behavioral expectations at each of four levels; clients on the lower levels have a limited range of options, which increase as they progress up through the levels. Third, one client group and two staff groups recognized that having legal guardians limited clients' empowerment, because, legally, the clients could not make decisions on their own about their care and treatment.
Achievement of Empowerment
One of the questions we sought to address was whether it was possible to empower all people with mental illness through treatment planning. We found that some clients were incapable of empowerment at particular times of their lives because of the presence of severe mental illness that interfered with their ability to make good choices. Other clients lacked decision-making skills. However, as the effect of the illness decreased and as clients gained decision-making skills, the potential for empowerment existed.
Although many clients may have the potential for empowerment through treatment planning, we found that empowerment was impeded by structural, ideological, and cultural factors related to the normal functioning of this long-term psychiatric hospital. One of the most significant factors was that parties external to the facility controlled discharge--legal guardians in the case of nonforensic clients and circuit court judges for forensic clients. Choice in the treatment planning process was determined in part by expectations of the responsible discharging parties. For example, for forensic clients who committed their criminal act when influenced by both the mental illness and substance abuse, judges expect clients to participate in the facility's dual diagnosis treatment program. In addition, each treatment program required a core set of treatment activities associated with the particular treatment model of that program. Choice of treatment activities was limited as clients were sometimes unable to get to treatm ent activities because of shortage of staff escorts, clients were not high enough within the level system to attend some activities, activities were offered at times when some clients could not attend, and staff often lacked the time required to help clients identify their goals and select treatment activities that best meet those goals. Finally, some staff believed that clients were incapable of directing the treatment planning process, whereas others did not want to give up the power they held in the treatment planning process.
In attempting to promote empowerment through treatment planning, some organizational factors are more easily addressed than others. For example, there is very little chance in this conservative political climate that Missouri legislators will change the criteria for the discharge of NGRI clients or transfer release authority from circuit court judges to clients and staff. However, staff attitudes can be changed over time through staff training, the selective hiring of new staff, and staff witnessing the positive results of empowering clients through treatment planning. Although this is a slow process, such culture change is possible, and it is occurring at the facility. Fifteen years ago, facility staff (and administrators) did not consider involving clients in treatment planning because of professional orientations that did not value client participation. The statewide adoption of psychosocial rehabilitation as the primary model for working with clients in the long-term facility was the first step in changin g the culture to one that increasingly is valuing client participation in treatment planning.
If we view empowerment as a process in the context of a public psychiatric hospital, the beginnings of empowerment were present in both the cottage and hospital programs. All programs focused on helping clients improve their ability to make decisions. Each did it in a different way on the basis of the treatment approach of the program. Having the psychiatric stability and skills to make informed decisions is the first step toward empowerment. As clients develop and practice new decision-malting skills, their potential for empowerment increases. Additional steps toward empowerment through treatment planning were made in the cottage program as deliberate efforts were made to help clients select their own goals and to develop treatment plans to facilitate achievement of those goals.
Conditions for Empowerment
Psychological and organizational conditions that must exist for clients to be empowered through treatment planning can be extrapolated from this study. Clients need psychiatric stability and decision-making skills to process information and to make informed choices. It is unjust to clients to allow them to make decisions when they are incapable of doing so. Ferleger (1994) believed that "excessive respect for the abstract notion of 'choice' can lead to the perpetuation of neglect or to an increase in the risk of neglect and other harms" (p. 75). In the short-term, some program components, such as required skill-building activities and level systems, actually limit choice, and thus empowerment. However, they may be a necessary interim step in the empowerment process if they advance clients' decision-making abilities.
All other conditions were organizationally related. One organizational condition is to provide clients with the opportunity to participate in treatment planning when they have the ability to do so. Adequate staff time should be devoted to treatment planning to allow time for clients to express their treatment goals, explore options for treatment goals and activities, gain information about them, and discuss the consequences of each option. Merely having clients present during treatment planning is insufficient. Treatment staff must be respectful of clients' rights and abilities to plan their treatment and be willing to share power with clients.
A second organizational condition is for clients to have a range of treatment options from which to choose. From an empowerment perspective, ideally clients would develop the menu of treatment options. However, treatment options are likely to be created from a combination of client input, staff input, the facility's program models, and entities external to the facility (for example, JCAHO standards and Missouri law). Regardless of the source, for empowerment to occur, these options must support the achievement of clients' self-selected goals (Sundram, 1994). As Ferleger (1994) stated, "For a person who wants a job, a choice of which sheltered workshop station to sit at is not a real choice" (p. 90). For clients with a limited or developing decision-making capacity, it may be appropriate to limit decisions to selecting, for example, leisure and recreational activities, clothing, or food options. A selection from choices in areas such as these can be meaningful and empowering for clients who are early in the em powerment development process (Dillon, 1994; Starkey & Leadholm, 1997). To make informed choices, clients need information about the content and consequences of those choices. Such information should relate to clients' goals and should be presented in a manner that takes into consideration their cognitive abilities. Clients also need access to the services they select for their choices to be meaningful. For facility clients, access was limited at times by an insufficient number of staff available to escort them to activities. For clients residing in the community, access to chosen services may be limited by lack of transportation or waiting lists for services.
A third organizational condition is that programs be implemented as designed. Implementation should be uniform across program components. Even well-designed programs may not achieve their potential to empower clients if they are poorly or inconsistently implemented (Caton, Goldstein, Serrano, & Bender, 1984; Holland et al., 1981).
A final condition for empowerment of clients through treatment planning is an organizational commitment to client empowerment that is reflected in program philosophy and operationalized in program design. Without a strong commitment, program administrators are unlikely to allocate the resources needed to offer a range of treatment options, develop staff attitudes supportive of client involvement in treatment planning, provide staff with the time needed to involve clients, or share decision making.
Implications for Social Work
Some social workers believe that clients must empower themselves and that the role of the social worker is to provide the structure and resources to enable this to occur (Rappaport, 1985; Simon, 1990). Within this perspective, empowerment of people with severe mental illness has implications for social work practice, administration, and research. The role of social work clinicians is to treat the mental illness, help clients develop their decision-making skills, and genuinely involve clients in treatment planning. The role of social work administrators is to provide an organizational climate that supports client empowerment, allocate sufficient time for staff to engage clients in treatment planning, and ensure that a range of meaningful treatment options exist. Finally, the role of social work researchers is to evaluate the level of empowerment experienced by clients in treatment planning, identify the treatment activities that best improve client decision-making skills, and monitor program implementation to ensure that programs are enacted as designed. Enactment of these roles can meet the psychological and organizational conditions required to empower people with severe mental illness through treatment planning.
Original manuscript received September 28, 2000
Final version received July 31, 2001
Accepted July 19, 2002
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Donald M. Linhorst, PhD, is associate professor, School of Social Service, Saint Louis University, 3550 Lindell Boulevard., St. Louis, MO 63103; e-mail: email@example.com. Gary Hamilton, PhD, is associate professor emeritus, and Eric Young, MSW, was an MSW student at the time of this study, School of Social Service, Saint Louis University.
Anne Eckert, BA, RNC, is quality management specialist, Quality Management Department, St. Louis Psychiatric Rehabilitation Center, St. Louis. The authors thank the Emmett J. and Mary Martha Doerr Center for Social Justice Education and Research, School of Social Service, Saint Louis University for its support of this research. Please direct correspondence about this article to Donald M. Linhorst.
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