Pergamon Evaluation and Program Planning, Vol. 17, No. 1, pp. 81-92, 1994

Cowrieht 0 1994 Elsevier Science Lrd Pr%ebin the USA. All rights reserved

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MENTAL HEALTH REFORM: CLIENT AND FAMILY MEMBER PERSPECTIVES

LINDA BROWN, MARY DURAND THOMAS, and DAVID G. ALLEN

Department of Psychosocial Nursing, University of Washington

LEWAYNE D. GILCHRIST

School of Social Work, University of Washington

ABSTRACT

This article explores the impact of mental health reform from the perspective of those mosi affected by changes in the organization and delivery of services: clients and family members. Eighty-four clients and 48 family-memberpar~~c~pan fs were interviewed about their experiences with fhe menfaf hearth system. Specifically addressed are experiences with and ~erce~fjons of (a) client fiving situations, including adequacy and stability, (b) ~omrnuni~y support services, including case management and crisis services, (c) normalization of daily life, including partic- ipation in work or vocational services and social activities, and (d) changes in the mental health system. In addition, family members’perceptions of burden in caring for a mentally ill relative will be discussed.

This article will explore the impact of early mental he&h reform from the perspective of those individuals most directly affected by changes in the organization and de- livery of services: clients and family members. Specifi- cally addressed will be client and family members’ experiences and perceptions of (a) adequacy and stability of living situations, (b) community support services, in- cluding case management and crisis services, (c) normal- ization of daily life, including participation in work or vocational services and social activities, and (d) changes in the mental health system. In addition, the perceptions of family members/significant others of their experi- ences of burden will be addressed.

To explore these questions, clients and family mem- bers/significant others in 3 Regional Service Networks (RSNs) were interviewed between February and Sep- tember of 199 1. The RSNs were selected to represent different geographical areas of the state with rural-urban dimensions, different state hospital linkages, and differ- ent ethnic minority population concentrations. Partici- pants were purposely selected to include groups who had potentially different experiences with the mental health

system and system change. The groups and the rationale for their inclusion are discussed below.

METHODOLOGY

Participant Selection

Clients. General criteria for client participation in the study included: (a) active client status in an RSN agency for 18 months prior to the study (except for the drop- out group), (b) 18 years or older, (c) ability to under- stand participation and give informed consent, and (d) willingness to have the interview audiotaped. The spe- cific group-selection criteria are presented in the follow- ing discussion.

Human subject requirements made recruitment of cli- ent participants a cumbersome and difficult process since we could not directly identify and access potential par- ticipants. To protect client confidentiality, the RSN agencies had to make the initial client contact and ob- tain consent to release the client name. Selection crite- ria were provided, and agencies were asked to send a standard letter to all potential participants explaining the

Requests For reprints should be sent to Linda Brown, Department of Psychosocial Nursing, School of Nursing SC-76, University of Washington,

Seattie, WA 98195.

82 LINDA BROWN et al.

study and requesting authorization to release their names to the researchers. While implied consent (no response to the letter was considered authorization to release the client’s name) was approved by the Human Subjects Re- view Board, and was stated in the letter, a number of agencies were not comfortable with this “implied con- sent” and would not release names without explicit au- thorization by the client. Once we received client names, we screened, explained the study, and obtained informed consent. While agencies were, for the most part, coop- erative in assisting with client access, this required time and other resources and was rarely an agency priority. Continuous work by the Project Director to maintain and nurture relationships with participating agencies was required. All of these factors made participant recruit- ment much slower and more difficult than had been expected.

This process also meant that agency staff made the initial decisions about clients who were invited to par- ticipate. In addition, we did not have access to informa- tion about individuals who chose not to participate. Across the agencies, staff members coordinating the ini- tial client contact reported a 30-40% refusal rate. The refusal among clients who agreed to an initial contact by members of the research team was also approximately 30%. The refusal rate was particularly high among el- derly and young high-utilizers and the dropout group.

The refusal rate was higher than anticipated. Given the limits on access to any data on potential subjects, or those who refused to participate when they were con- tacted by the researchers, we know very little about the characteristics of these groups. The most common rea- son for refusal given to the researchers was that the in- dividual did not feel well enough to participate or had nothing to talk about. The $10.00 payment was a strong incentive for many who participated.

Rationale for Participant Groups 2SSB 5400, The Mental Health Reform Act (the Act), identified population groups considered particularly “vulnerable,” including the chronically mentally ill, eth- nic minorities, and the elderly. Sometimes these groups are vulnerable because they experience unusually high prevalence rates for mental disorders-for example, a well-established correlation between poverty and stress/ depression-related problems (Gaw, 1993; Snowden & Cheung, 1990). Sometime they are vulnerable because, for various reasons, they are not treated effectively by

health care systems. Among these groups are people of color, people whose first language is not English, those with cultural belief systems not congruent with ap- proaches of traditional health-care-delivery systems (Fer- nando, 1988; Snowden & Cheung, 1990) and people whose illness is difficult to manage or whose behavior is troublesome to providers (Goldfinger, Hopkins, & Surber, 1984).

Washington has a citizenry with diverse social and eth- nic backgrounds. We used research and input from the Mental Health Division’s Ethnic Minority Advisory Council and the Study Advisory Panel to make decisions about how best to represent this diversity within the time and resource limits of the study. The decision, supported by the advisory groups, was to concentrate on several defined groups whose experiences with the mental health system could provide key information about system changes, both achieved and needed, and existing strengths and problems, rather than interviewing two or three peo- ple from a vast variety of different groups. The follow- ing groups were included in the study.

Ethnic Minorities: People of Color. We focused on ru- ral-dwelling Hispanics and urban-dwelling African Americans. This allowed us to explore the implications of (a) two ethnic groups with differing historical expe- riences as minorities, (b) at least one group not having English as a first language, and (c) rural versus urban residence. Hispanic clients were selected through four agencies in one of the rural RSNs, while clients in the African American group were selected through three agencies in an urban RSN. Specific criteria for these groups included ethnic group membership and place of residence.

High Utilizers. Mental health systems have long rec- ognized that a small proportion of consumers uses a disproportionately high number of services (Taube, Gold- man, Burnes, & Kessler, 1988). One such group identi- fied in Washington was called the “high utilizers” of state hospital services. The Act targeted services for “high uti- lizers” in order to reduce the use of state hospitals by this group. High utilizers were identified using Mental Health Division (MHD) criteria of three or more hos- pitalizations in state institutions (i.e., state hospitals) in a 2-year period, or a hospitalization of more than 180 days in a 2-year period. Among these high utilizers were subgroups that might be expected to present special chal- lenges and opportunities: (a) younger persons between the ages of 18 and 25 who might allow us to identify pat- terns that get established early and create frequent uti- lization, (b) older persons, age 60 and older, who are a growing demographic group with increasing visibility in state hospitals and state mental health systems, and (c) a middle-aged group from 30 to 59 who might dem- onstrate the range of consumers’ experiences associated with extensive use of the state hospitals. Specific selec- tion criteria for high-utilizer groups included level of state hospital use and age.

Community Maintained. In contrast to high utilizers, a large group of clients are served in the community and successfully avoid or have minimal state hospital use. Since the Act called for a community-support model, consumers who were successfully supported in the com-

Clients and Family Members 83

munity were chosen to offer insights into what makes a community-support system work. For the purposes of the study, “community maintained” was defined as no use of a state hospital during the previous 2 years of RSN agency service. Specific selection criteria for individu- als in this group included active client status and no state hospital admissions for 2 years prior to the study.

Dropouts. Seriously and persistently mentally ill indi- viduals who do not participate in the mental health care system are a growing concern in Washington State and throughout the nation (Lamb, 1988). They are often de- scribed as “falling through the cracks.” By interviewing seriously and persistently mentally ill individuals who had been, but were not currently, receiving treatment, we looked for clues regarding why they had dropped out. “Dropouts” were defined, for selection criteria, as in- dividuals with serious mental illness who had discontin- ued mental health services at least 6 months prior to the study without the consent of the community agency.

Family Members and Significant Others. The people who both make any community-support system succeed and are dramatically affected by its failures are family members of mentally ill individuals. We included two groups of family members in the study. The first group consisted of family members or significant others of con- sumer subjects. Individuals in each of the interview groups, except the dropout group, were asked to iden- tify persons who were important resources in their lives. These support persons were then interviewed regarding their perceptions of how the mental health system was doing in supporting the consumer in the community and in not adding unduly to the burdens of the family or significant other. Criteria for participation included will- ingness to participate and to have the interview audio- taped and some contact with the client on at least a monthly basis. No individuals in this group refused to participate.

To widen our scope, a second group of family mem- bers was included. These were individuals whose personal experience with mental illness in the family had led them to be active in a chapter of the Alliance for the Mentally Ill. The presidents of each of the advocacy groups in the three RSNs published information about the study in their newsletters, and asked interested individuals to re- spond to the Project Director. Criteria for inclusion in- cluded having a family member in active treatment in a community mental health agency and willingness to have the interview audiotaped. We quickly reached the goal of 20 family members and were not able to inter- view a number of individuals who responded. The men- tally ill relatives of individuals in this group did not participate in the study.

Tables 1 and 2 present some of the characteristics of the 84 consumers and 48 family members/significant others who participated in the study.

TABLE 1 CHARACTERISTICS OF CLIENT PARTICIPANTS

Group

Gender

No. of Age Subjects Male Female Range

African American

Hispanic

High Utilizers

Young

Middle

Older

Community Maintained

Dropouts

Totals

18 10 a 23-61

17 8 9 22-75

5 1 4 18-25

12 7 5 31-56

6 4 2 60-68

18 6 12 27-66

8 4 4 30-44

a4 40 44

It is interesting to note that eight clients identified their case manager as their most important support person, although all individuals were encouraged by the inter- viewer to identify a family member or significant other outside the mental health system. While concerns about confidentiality with family members or friends may have influenced the decision of some consumers to choose case managers as their significant other, in most of the situations case managers did, in fact, seem to provide the most important link the individual had to the com- munity. Clients who identified case managers included two African Americans, two middle high utilizers, two older high utilizers, and two community-maintained individuals.

Instruments Semi-structured interview schedules were developed by UW researchers according to the priorities of the Act. Existing instruments were utilized when possible and

TABLE 2

FAMILY MEMBER CHARACTERISTICS

Relationship

No. of

Group Subjects Parents Children Siblmgs Imp. 0th.

African American 6 1 0 2 3

Hispanic 4 1 2 0 1

High Utilizers

Young 3 2 0 1 0

Middle 5 1 1 1 2

Older 4 0 1 1 2

Community

Maintained 6 2 1 1 2

Dropouts 0 0 0 0 0

AMI Family

Members 20 20 0 0 0

Totals 48 27 5 6 10’

l Includes 8 case managers identified by consumer as most impor-

tant support.

84 LINDA BROWN et al.

modified for purposes of the study. Drafts of the instru- ments were reviewed by the Advisory Panel and by a medical anthropologist experienced in research with psy- chiatric populations. The interview schedules were pilot- tested with both clients and family members. Additional modifications and clarifications were made as both au- dio recordings and transcripts of actual pilot interviews

were reviewed by the research team.

Client Interview Schedule. Open-ended questions ad- dressed the following topics: (a) housing, (b) utilization of community-support services, (c) daily activities, in- cluding normalizing activities such as work or partici- pation in vocational and educational programs, and social responsibilities/activities with family or friends, (d) management of crises related to mental illness and life events, and (e) perceptions of service changes since implementation of mental health reform.

Family-member/Significant-other Interview Schedule. In interviews with family members/significant others the following topics were addressed: (a)relationship to cli- ent and understanding of their illness, (b) client’s hous- ing/living arrangements, (c) role of the mental health system in supporting relationship to client, (d) client’s daily life and role of the mental health system, (e) ac- cess to care for client, (f) experience with changes re- lated to the Act, and (g) caregiving burden.

Data Generation The interviewers included a former case manager, a psy- chologist, a master’s_prepared nurse, and six graduate students from the UW Department of Psychosocial Nursing and the School of Social Work. One interviewer was African-American and two were Hispanic-American and bilingual. Criteria for selecting interviewers included experience with psychiatric clients as well as previous research involvement. Interviewers were trained and supervised by the members of the study team. As inter- viewers began conducting the interviews, investigators listened to the tapes and provided feedback. The Project Director and other investigators provided guidance as issues arose over the course of the study.

Interviews were conducted in the home of the partic- ipant or in some other mutually-agreed-upon location. Client interviews averaged about 40 minutes, while family-member interviews were longer, averaging about 7.5 minutes. All participants were paid $10 for their par- ticipation. Interviews were audiotaped and transcribed for analysis. Those interviews conducted in Spanish were translated by the interviewer.

Analysis Martin, a Windows application for qualitative textual research (Diekelmann, Lan, &Schuster, 1991), was used by the investigators to facilitate analysis. Coding cate- gories were identified by the investigators from the study questions and from a review of selected interviews. The

categories and procedures for coding were discussed with the four master%-prepared nurses who assisted investiga- tors with the coding. The categories were carefully struc- tured since each coder was coding a distinct data set. The printouts of the coded data were then reviewed for in- formation relevant to answering the study questions.

FINDINGS AND DISCUSSION

The discussion of findings from participant interviews will focus on the following aspects of client and family mem- bers’ experiences with mental health reform: (a) living situations, including participant’s perceptions of adequacy and stability; (b) use and experiences with community mental health services, including case management and crisis services; (c) normalization of daily life, including work or vocational services and social activities; and (d) changes in the mental health system. In addition, the discussion of findings will include the perceptions of family-member/significant-other participants of their experiences of burden. As relevant, interview findings will be discussed in relation to findings from the other data sources used in the study.

Client Living Situations

Types of Residence. Providing residential options to increase adequacy and stability of clients’ living situa- tions in the community was a clearly stated goal of the Act. RSNs received some additional resources and strong encouragement from the MHD to strengthen ex- isting residential programs and to develop additional res- idential-support programs. Consistent with the purpose of the Act to develop regionally sensitive service systems, RSNs had a great deal of autonomy in determining re- gional priorities for residential services. However, in all RSNs, there was clear recognition that stable living sit- uations was a key factor in keeping the clients in the community and avoiding hospitalization. This need was addressed in a number of ways, including emphasizing residential support in case-management services, as well as increasing the number of mental-health-supported residential programs available.

Sixty-three percent of the participants lived with fam- ily, others, or alone, in housing that was not supported by the mental health system. Thirty-two percent of the participants lived in mental-health-supported settings. Both families and mental health providers were impor- tant in helping clients find housing. Approximately 60% of consumers who did not live with family members re- ported receiving some assistance from the mental health system in locating housing, even when the housing was not supported by the mental health system. Case man- agers were especially important in assisting clients with housing. This assistance included helping clients apply for appropriate assistance with housing costs, such as Section 8 and other low-income housing programs, and

Clients and Family Members 85

assisting in interactions with landlords and transactions involving rent money.

The overall findings from the interview data concern- ing types of residences were similar to chart-review data from the last quarter of 1991. Across the four RSNs in the chart review, approximately 65% of the 1,500 clients lived in situations, either with family, unrelated others, or alone, that entailed little-to-no residential as- sistance from the mental health system. Another 30% lived in situations that required support in obtaining and maintaining the residence and in managing daily life. Similarly, this assistance was provided by both family members and the mental health system.

Client residential situations varied among the groups as shown in Table 3. The use of mental-health-supported residential settings, a limited and high-demand resource in all of the RSNs, was highest among high utilizers of hospital services and the community-maintained groups, with over 50% of individuals in these groups living in supported residential settings. Given the priority in all RSNs on reducing use of the state hospitals, the use of residential settings in the community, with the more in- tensive services they provide, to decrease hospital use by high utilizers was not unexpected. The number of com- munity-maintained individuals (those with no state hos- pital use for 2 years) suggests that community mental health residential support was an effective community- maintenance intervention. It would have been interesting to note the state hospital use of this group of clients be- fore they were placed in supported residential settings. African-American participants, all living in a densely populated, urban RSN, had a broad range of living situations. Most (50%) lived with family members or friends, while a little over 20% lived alone. The other 30% lived in mental-health-supported residential settings.

Hispanic-American clients were much more likely to live with family members than any other group. While the rural RSN had fewer supported residential settings available, as Hispanic clients and family members talked about residential options and decision making, it was

clear that living with family members was the preferred and expected situation. There was a shared expecta- tion that the family-either parents, adult children, or spouse - would provide a place to live. Living in a mental- health-supported facility was a last resort to be considered only when the family could not manage the individual. Several family members expressed regret that the state hospital was so far from the community as they consid- ered the hospital the only kind of mental-health resi- dence that their family member might need. A common theme among Hispanic participants was the need for more affordable housing for everyone in the community. Regardless of the mental illness of a family member, lack of affordable housing limited residential options for a number of the Hispanic families.

Two distinct sub-groups were found in the dropout group. The three individuals who lived with family mem- bers were very functional in their roles as single parents caring for children. They all described dropping out of treatment because they felt they had solved short-term problems and no longer found treatment useful, al- though they were advised by the mental health center to continue. The other five dropouts, accessed through an emergency services center in an urban area, were much less functional and had the most transient and uncertain living situations of all the participants. Four of these par- ticipants used the shelter provided by the emergency ser- vice center on a regular basis, while the other lived in a single room in a rooming house. The information pro- vided by these individuals indicated long-standing ma- jor mental illness, complicated by substance abuse, and refusal to engage in treatment, that consistently inter- fered with their ability to maintain any kind of residen- tial stability.

A common theme in all of the groups was the limited options in residential choice since cost, and the general lack of housing stock, severely limited what was avail- able to them. In many communities, both family mem- bers and mental health providers reported a 1% vacancy rate for rental housing. The effect of this low vacancy

TABLE 3

RESIDENTIAL SITUATION BY CLIENT GROUP

Client Group

Resid.

Type

Afric.

Amer.

Hisp.

Amer.

Young High

Utilizer

Middle High

Utilizer

Older High

Utilizer

Corn.

Maintained Dropouts Totals

Family 7 15 1 1 1 2 3 30

Others 2 1 1 2 0 1 1 8

Alone 4 1 0 3 2 5 0 15

M.H.’ 5 0 3 6 3 10 0 27

Shelter 0 0 0 0 0 0 4 4

Totals 18 17 5 12 6 18 8 84

*Includes all types of mental health supported living

86 LINDA BROWN et al.

rate was to increase both the cost and competition for existing housing. These factors increased the problem of locating adequate and affordable housing and made it even more difficult for mentally ill individuals to com- pete successfully in the general housing market.

Residential Adequacy. The question of adequacy of a living situation is complicated. Adequacy can be con- ceptualized in such basic terms as safety, cleanliness, and how well rest and nutritional needs are met. How well the residential situation serves to maximize individual functioning and quality of life, and matches the client’s long-term treatment plan, is a more ambitious and, per- haps, the most desirable index of adequacy. Consumer satisfaction is a third index that can be used. Assessing adequacy in relation to level of functioning and consis- tency with the treatment plan was beyond the scope of this study. Given the limits of the study, we used infor- mation from client and family interviews to address “ad- equacy” in relation to perceived safety and satisfaction within the residential setting.

The residential situation for clients in the dropout group who lived in shelters was clearly the most inade- quate. All of these individuals talked about the difficul- ties and discomforts of their living situation and of the hopelessness they felt about changing the situation. No other group was so consistent in their evaluation of their living situations.

Across all of the groups, clients identified the fol- lowing factors as important to their satisfaction with housing. Privacy and some personal autonomy were im- portant characteristics, as were safety and comfort. Per- sonal autonomy was experienced in two ways: (a) having had a voice in the decision about where to live, and (b) some ability to make personal decisions within the set- ting. Cost was always a major consideration. When housing was perceived as costing more than the quality warranted, regardless of the setting, satisfaction with the setting was low.

For individuals in group settings, both mental-health- supported programs and living with family or friends, the presence of others and the structure this provided were valued aspects of the situation. These qualities, however, needed to be tempered with privacy for most individuals. A frequently identified positive aspect of sup- ported living situations was the provision of food. Man- aging daily life tasks was experienced as a difficult burden by many clients in these settings, and food was an im- portant aspect of their positive evaluation of the living situation.

The freedom to structure one’s activities without su- pervision was most valued by individuals who lived alone. Clients living in group homes and other residen- tial-treatment settings who did not perceive the need for the structure provided were the most dissatisfied with their residential situation. The delicate balance between

an appropriate level of structure and mental health in- volvement versus independence and autonomy in the community was consistently a visible and difficult issue related to community-living situations.

Individuals who lived with family members identified a sense of belonging and of knowing that there were oth- ers who cared as an important aspect of their living sit- uation. For a number of consumers living at home, the caretaking, including laundry, cleaning, food, etc., pro- vided by family members was an important part of their comfort and satisfaction with the situation.

Family members evaluated adequacy of living situa- tion much the same way that clients did but identified other factors as well. The physical appearance of the set- ting was more likely to be identified as inadequate by family members. These concerns included cleanliness and general upkeep. Family members were also more concerned with how well the setting matched their as- sessment of what the consumer needed in order to func- tion at their best possible level. Thus, it was possible for the client to be quite satisfied with the living situation and for family members to find it inadequate due to their assessment of the individual’s needs.

In general, family members were satisfied with the programs in mental-health-supported living situations. Families perceived situations in which clients lived alone or with others as more adequate when the client had a case manager who monitored aspects of the living situ- ation. A number of family members, especially among the high-utilizer client groups, were candid about feel- ing relief that their family member had a place to live other than the family home, even if they felt the living situation was not as safe, comfortable, or structured as the family home.

While the two groups of family members (those with client family members in the study and advocacy-group family members) had similar opinions and assessments of the living situations of their mentally ill family mem- bers, there were a few areas of difference. Advocacy- group members were more critical of the residential services provided by the RSNs. Overall, they were sat- isfied with the quality of the available programs but felt that the RSNs had not moved quickly enough to increase supported residential services in the community. Many stated that the RSNs had been responsible with the re-

sources they were given but questioned some of the pri- orities the RSNs had established that had used resources that advocates felt should have been devoted to resi- dential options. Questions were also raised about deci- sions related to which clients were eligible for residential services.

Residential Stability. To address the question of residen- tial stability, clients were asked about their previous liv- ing situations, how long they had been in their present living situations, and about any anticipated moves. Fam-

Clients and Family Members 87

ily members were asked the same questions about their client family member. Over 85% of clients in all of the groups had been in their current living situations for over a year. Predictably, the groups with the most unstable residential history were the high utilizers and, of course, the clients in the dropout group who used the shelter. Two high-utilizer clients who lived in supported residen-

tial settings reported admission to the state hospital and return to a supported community setting in the year prior to the interview, while another four reported moving among two or three residential programs during the year due to changes in symptoms and interpersonal conflicts within the settings.

The most stable living situation for all groups was liv- ing with family members. Only 3 of the 30 clients who lived with family members reported any residential change during the year prior to the interview. Nearly as stable were clients who lived alone. Residential changes for clients living alone involved a friend or family mem- ber moving in with them rather than leaving the resi- dence. Although the year prior to the interview had been stable for most participants, clients in the African- American, high-utilizer, and community-maintained groups all gave histories of a number of moves in the past and talked of expecting to move again in the future.

As clients talked of their plans and expectations for future living situations, their plans were not immediate nor very well formulated. Possible moves were discussed in terms of a desire for something better, such as a safer place, or a place that provided more opportunity for in- dependence, or other desired goals such as being nearer family members or friends, or access to better shopping opportunities. The perceived barriers to desired moves were almost all related to the cost of housing. While most individuals were relatively satisfied with their cur- rent living situations, the perception (and reality) of very few affordable options was an important factor contrib- uting to residential stability.

Use of Community Mental Health Support Services The Act embodied a change in treatment philosophy from a more traditional facility-based, outpatient- treatment model of service delivery to a community- support model that emphasized a case-management approach aimed at providing the services and resources necessary to enable the client to remain in the commu- nity and function at their full potential. To achieve this goal, RSNs were charged with strengthening and devel- oping both case management and comprehensive crisis services. In this section, the experiences and perceptions of clients and family members/significant others in re- lation to these mental health services will be explored.

Case Management Services. To understand client expe- riences with case management, clients were asked if they had a case manager, what the case manager did, and how well these services worked for them. Family members/

significant others were asked about their perceptions of the case-management services received by their relative and about their experiences with their relative’s case manager.

The majority of clients in all of the groups used case- management services and had received similar services prior to mental health reform. Most clients in the high- utilizer and community-maintained groups had case managers and, with one exception, saw their case man- agers on a regular and frequent basis. One community- maintained individual refused to see the case manager because she felt it unnecessary to see both a counselor and a case manager and chose to see just the counselor. Fifteen of the 18 African-American clients, and 9 of the 16 Hispanic clients, had case managers and saw them on a regular basis. Reasons for not having a case man- ager varied, with the most common being that the ser- vice was not offered and the client had not requested it. Although individuals in the dropout group were not ex- pected to receive any services, two individuals had non- mental-health case managers from the emergency services center.

When interview participants were compared to the chart-review sample, it was clear that the interview par- ticipants were more likely to receive case-management services. In the random sample of 1,500 charts, 57% of clients received case-management services while 88% of the interview participants had received these services. (The eight clients in the dropout group were not included in these figures since they were not in the mental health caseload at the time of participation.) It is possible that procedures for selecting interview participants could have yielded more individuals with case managers inde-

pendent of group membership. However, it is more likely that case-management services have been selec- tively targeted to the groups identified as priority pop- ulations in mental health reform, including ethnic minorities and high utilizers of hospital services, groups that were purposely sampled for interviews. It also ap- pears that case-management services were an important service element in keeping clients in the community, as illustrated by the high number of community-maintained individuals who received case-management services.

Case managers, with the multiple broad services they provide, were a primary source of community support for most of the clients. Among the commonly identified services were help with money management and housing, help with symptom management, assisting the client to resolve interpersonal problems in shared-housing situ- ations or with family members, and helping the client access other mental health services, including medication services, in urgent situations where the client had not re- filled prescriptions or had discontinued medication.

Case managers were often the first person clients turned to for help. Thus, early crisis intervention was an implicit function of the case managers. Clients fre-

88 LINDA BROWN et al.

quently talked about case managers’ willingness to see them more often than they were scheduled during diffi- cult times, and this flexibility and availability was an im- portant aspect of the services case managers provided.

In general, clients were satisfied with case-manager services and spoke very positively about “my” case man- ager. A common theme was wishing to have more time with the case manager while talking about how busy their case manager was. One common area of conflict emerged among the small group of clients (approxi- mately 10) for whom case managers served as protec- tive payee. While most of these individuals recognized that they had trouble managing their money, they wanted to be able to do so, and felt that the case man- ager had too much power in determining how their money was spent.

Another indication of the importance of the case man- ager to clients was the common concern about losing a known case manager. A number of individuals talked with a sense of sadness about the difficulty of getting used to someone new, and the loss of an old case man- ager, and the things they had done together.

Family members shared the clients’ positive percep- tions of case managers and the services they provide. Families experienced case managers as more accessible than other mental health professionals, and as their link to the mental health centers and the multiple services the client received. An important way case managers linked families with the larger service system was by providing appropriate information about the condition, treatment, and progress of the mentally ill relative. With few ex- ceptions, case managers were perceived as willing to see the family as participants in the client’s care and to both provide and receive information about the client. A com- mon theme among family members was their past ex- periences with mental health centers where the therapists “hid” behind confidentiality barriers and would neither listen to the family when they wanted to share informa- tion nor provide information that the family considered important to their ability to assist their relative in func- tioning in the community.

Family members were clear about the importance of the quality of the client’s relationship with the case man- ager and the negative impact when case managers changed frequently. An often-heard complaint from family members was that “good case managers leave.” The most frequently perceived reasons for case-manager turnover were “the good ones get promoted away from the client” and “case-manager burnout.” Families were concerned about the size of case managers’ caseloads and were aware of the multiple demands of the case-manager role. Both of these factors were cited as reasons for case- manager burnout. Advocacy-group family members were more likely to express concern about caseload size and to be aware of the demands of the case-manager role.

Crisis Services. The Act charged RSNs with developing comprehensive crisis systems that would integrate all as- pects of crisis management in the RSN. One component of the crisis system was a 24-h crisis number that clients and the larger community were educated to use. To ex- plore client and family member experiences, perceptions, and knowledge of crisis services, we asked about recent crisis situations and how they had managed them, and about their knowledge of mental health crisis services.

The findings were similar across the client groups. Most individuals had experienced at least one self- or family-defined crisis during the previous 6 months. Older clients were less likely than younger ones to re- port crises and, overall, clients were less likely than fam- ily members to define events as crises. Hispanic clients and their family members were also less likely to report crisis events. Although individuals who lived in mental- health-supported residential settings could identify up- setting events when specifically asked, they were less likely to perceive these events as crises than individuals who experienced similar events in other settings. This seemed to be due to the availability and early interven- tion efforts of mental health staff in these settings.

Crises fell into two categories: (a) events that were per- ceived as directly related to the mental illness, includ- ing increased symptoms, problems with medication, and, in a number of instances, use of alcohol or drugs, and (b) events not perceived as directly related to the ill- ness, such as not having enough money or interpersonal conflict that was not attributed to symptoms. The ac- tions taken in response to the crises were influenced by the perceptions of the situation as a mental illness event or an ordinary life event, and by the resources that were seen as available.

Clients reported seeking mental health assistance for only about half of the crises they experienced, and when they did seek mental-health assistance, they were more likely to use their case managers than RSN crisis services.

Both clients and family members were more likely to use mental health services, either case managers or the cri- sis service, for crises that were perceived to be related to the mental illness. These findings support those from the chart-review data that charts under-report the num- ber of crises clients experience.

Family-member response to crises was influenced by their knowledge of the available services and their sense of relationship with the mental health center. Family members were more likely than consumers to use the RSN crisis service if they were aware of the service, al- though they also used the client’s case manager if the cri- sis occurred when the case manager was available.

Both clients and family members had personal, infor- mal, resource systems that they used to resolve crisis sit- uations when they were not aware of mental health crisis services, could not access them; or did not think they were appropriate to the situation. These resources in-

Clients and Family Members 89

eluded friends and other family members, advocacy alone or with unrelated others, and for those in the high- groups, church support-especially members of the utilizer groups. Although mental health services, includ- clergy, local hospital emergency rooms, the 911 emer- ing day-treatment and clubhouse programs, were often gency phone number, private physicians, and, in some available, they were less likely than other clients to par- situations, the police. ticipate in these programs.

When asked about their knowledge of crisis services, including the crisis phone number, most family members and clients had some general knowledge about crisis ser- vices, but few knew the phone number or where they might find it if they needed it. Most were not aware of the 24-h nature of the services or what they could ex- pect from mental health crisis services. The local hospi- tal emergency room, 911, or the police, were perceived as the most immediate sources of assistance in a “real” crisis that demanded an immediate response.

While this picture was less common for clients who lived with family members, living with family did not ensure social connections. For approximately one-third of the individuals living with family, there was little so- cial engagement, and attempts by the family to provide some structure to daily life were often sources of con- flict between the client and the family.

Family members who lived with the mentally ill rela- tive were more likely to know about RSN crisis services and how to access them. This was also true for family members of high utilizers regardless of where the men- tally ill relative lived. Advocacy-group family members had more knowledge of crisis services.

Family members often recounted long and unsatisfac- tory histories of system responses to crises. Among the commonly identified problems were experiences in which family assessments of developing crises, and suggestions for crisis resolution, were discounted and ignored. An- other common concern was the lack of community re- sources to deal with crises, such as little-to-no emergency housing and an inability to obtain immediate medica- tion evaluation when family members thought it was in- dicated. In spite of the widespread, negative history of family-member/mental-health-system interactions re- lated to client crises, most family members felt that cri- sis services had improved with regionalization. However, there was a shared feeling that more should be done to respond to family input in crisis situations and to inter- vene earlier in potential crisis situations.

The second picture was a life in which the individ- ual was less isolated and was actively engaged in some programs and activities. Individuals in this group de- pended primarily on the mental health center and the structure it provides for their engagement with the world. These clients commonly participated in day- treatment and clubhouse programs, had a case manager, and were likely to live in mental-health-supported resi- dences. This picture was common for individuals in the middle high-utilizer and the community-maintained

groups. The last picture, common for Hispanic clients and for

several clients in the community-maintained and Afri- can-American groups, was a daily life characterized by engagement with family members/significant others. Clients in these situations had definite social responsi- bilities and an active role in the social world of the fam- ily and the larger community with which the family interacted. The church was frequently an important part of the family social life in which the client participated.

Normalization of Daily Life Developing regional service systems that would support clients in living productive, integrated lives in the com- munity was an explicit goal of the Act. To explore this topic, we asked participants about their daily life activ- ities, including participation in such normalizing activ- ities as work or vocational programs, and about their social relationships and activities.

The client and family-member interviews made it clear that, for many clients, achieving a productive and sat- isfying life in the community was difficult. The client’s living situation emerged as a major, important factor in assisting the client to accomplish this. Individuals who lived with family members with whom they were en- gaged, or in mental-health-supported settings, were most successful with the task. Clients in these settings partic- ipated in a number of normalizing activities, including shared responsibilities for daily living activities such as laundry, housekeeping, meal preparation, etc., that pro- moted a sense of being a part of an important social unit.

Structure of Daily Life and Social Engagement. As clients talked about their daily lives, several pictures emerged. One common picture was a life characterized by social isolation and little engagement in normalizing life activ- ities. The daily lives of these clients were unstructured and determined primarily by the individual. Most re- ceived some help with the tasks of daily living on an as- needed basis from family members or a case manager. This pattern was especially common for clients who lived

Participation in Work and Vocational Programs. The important role of work and work-related activities to the normalization of life has long been recognized by men- tal health professionals and advocates for the mentally ill (Black, 1988; Danley & Mellen, 1987). Increasing the vocational services and employment opportunities for clients in the community has long been a goal of the MHD. The Act highlighted this goal with an emphasis on services to promote productive and meaningful en- gagement in the community. To explore clients’ experi- ences related to work and vocational services, we asked

90 LINDA BROWN et al.

about their current and past experiences with work and vocational programs.

The interviews showed limited participation in work and vocational activities, that seemed to reflect the Iim- ited employment opportunities and vocational services that were available. In response to the broad question, “Do you work?” 25% (21 clients) said they were work- ing. As we explored “work” with these participants, we found that most (14 clients) were working in programs associated with day-treatment/clubhouse programs in which they had assigned duties and responsibilities. The other 7 cIients who considered themselves to be working were employed in part-time, nonmental-health-related positions.

The self-defined aspect of “work” was an interesting one. A number of participants reported doing the same tasks, or having similar assigned responsibilities in their residential settings, but they did not define these activi- ties as “‘work”. For these participants the activities were considered “chores” they needed to do as part of living in the situation rather than “work.”

Onfy four clients were participating in mental-health- sponsored vocational-training programs. Two clients, a young high-utilizer and a young community-maintained individual, reported that they had discontinued training programs at the mental health center because they did not like the work. Three others were waiting to enter mental-health-system-sponsored programs, and two par- ticipants had applications pending for Department of Vocational Rehabilitation (DVR) services. Two clients spoke of participating in work-training programs in the

past. As clients talked about work and vocational pro-

grams, several themes emerged. One was a sense of wanting to work some time in the future but not now. It was common for individuals to express a wish to work, paired with statements like, “but I’m not really ready to work now,” and “but it would just be too stressful now,” and “I’d really like to but I just can’t, you know.” An- other theme was the lack of employment or vocational programs that offered the kinds of work the client wanted. Overall, client perceptions and feelings about work and vocational programs were ambivalent and mixed.

Family members were not ambivalent in their assess- ments and expectations for vocational services. They consistently identified the lack of mental health services focused on employment as a current and long-standing problem. WhiIe family members acknowledged barriers to employment, including the presence of psychiatric symptoms, empIoyers’ reluctance to hire mentally ill in- dividuals, and lack of client moti~~ation, there was a strong and shared feeling among family members that the mental health system should do more to encourage and support employment services. Families tended to view clients as capable of more productive activities than

they were engaged in, and considered it a failure of the mental health system that clients’ vocational and em- ployment potentials were not more fully realized.

Case managers and other RSN staff were aware of these expectations and expressed frustration at what they perceived to be unrealistic expectations. They also ac- knowledged that they were not able to provide the level of vocational service they considered appropriate. Case managers cited high unemployment rates in most com- munities as a factor contributing to the lack of employ- ment opportunities. In addition, they cited problems in getting appropriate vocational services for clients through DVR programs. Barriers to DVR services included rigid interagency boundaries, DVR concerns about clients’ symptomatology, lack of appropriate programs for in- dividuals with chronic mental illness, and low client mo- tivation to participate in available programs.

Overall, client participation in employment and vo- cational programs was limited across all the client groups. Family members and service providers were more concerned about the lack of relevant services and limited participation in work and vocational activities than were clients.

Perceptions of Change To explore client and family member awareness and per- ceptions of change in the mental health service system, participants were asked if anything had changed and their opinions of that change. Family members were more aware of changes than clients, and advocacy-group family members were more aware of changes than other family members.

Only 25% of the clients were aware of change, even though most of the chents had received continuous ser- vice during implementation of reform. The changes cli- ents identified were primarily positive and included increased case-management services and more programs in the community such as clubhouse programs. Nega- tive changes included case-manager turnover and hav- ing to wait longer for services because more people were being served.

Family members agreed with the clients’ perceptions of change. In addition, families noted positive changes in crisis services and felt that communication between families and the mental health system had improved largely due to the role of the case managers. Family members also thought that admission to the state hos- pitals was less likely to occur due to the services that were provided in the community. While most changes were positive, family members also identified some negative changes, including a perceived increase in case-manager caseloads and an increase in turnover of case managers.

Among advocacy-group family members, some of the negative aspects were not observed change but the ab- sence of change they had anticipated with implementation of reform. A particular area of concern was development

Clients and Family Members 91

of mental-health-supported housing. A number of fam- ily members cited the need for more housing and for a wider range of residential options in the community.

Family Experience of Caregiving Burden To better understand the experiences of having a men- tally ill relative, family members were asked about their experiences of burden (Maurin & Boyd, 1990). Partici- pants in all the client groups spoke movingly about their experiences and the responsibility they felt for their men- tally ill relative. Among the common themes were hav- ing to accept the chronic nature of the illness and mourn the loss of hope that the person would ever be well; the feeling of responsibility for another adult who was un- able to act as an adult while desperately wanting to; the helpless sense of knowing what would help without the ability to make it happen; and the sense that others, in- cluding mental health professionals, expected more from the family than they could provide. Through all of these concerns, we heard the pain family members felt for the mentally ill member and for their inability to “make it all better.“This was often compounded by their lack of understanding of the nature and course of the illness.

Family members, especially parents, also spoke of the impact of the mentally ill family member on the rest of the family. Concerns in this area included a sense of neglecting other children and family members while car- ing for the mentally ill person, conflict and misunder- standing between partners about management of the illness, social isolation of the family when others do not understand mental illness, and the ongoing financial bur- den. A common theme among older parents who were primary care providers was concern about who would care for their child when they were no longer able.

While these were shared themes, we also heard dif- ferences among the groups. Burden was a less common concept among Hispanic family members. The mother of a Hispanic client clearly expressed this when she said: “Burden? It is not a burden. It is my duty to understand. I don’t think anyone else can as much as I can because I’m his mother.”

The sense of burden was strong among family mem- bers of the young and middle high-utilizer clients. The clients’ unpredictable behaviors and frequent hospital- izations created a sense of always waiting for something to happen. While some family members felt they had been able to relinquish some of the burden to the men- tal health system when the relative was placed in a resi- dential setting, they lived with the concern that the client might “blow another good thing.” This meant losing the residential placement and the family, again, having to pick up the burden, which was a familiar cycle for these family members.

In spite of the frequent hospitalizations common to the high-utilizer group, one of the burdens family mem- bers experienced was their inability to access inpatient

care for their relative. Several families described living through episodes of dangerousness, when they feared for their safety and that of others, but were unable to con- vince the mental health system that their relative should be hospitalized.

Family members of the older high utilizers were less burdened, perhaps because they were more distant and less involved in the daily lives of their relatives. This was reflected in the fact that 2 of the 4 elderly high utilizers selected their case manager as their most important sup- port person.

Although the notion of burden was more familiar to family members selected from the advocacy groups, and they were more articulate about their experiences of bur- den, the experiences recounted and the feelings expressed were very similar among the groups. For all family mem- bers, the core of burden seemed to be the sorrow and frustration of watching their relative live with a perva- sive and chronic illness, and the helplessness they felt about their ability to improve life for the family member.

SUMMARY

Interviews with clients and family members about their experiences and perceptions of mental health services and mental health reform revealed a number of common experiences and some definite groups differences. Par- ticipants reported little change in either the adequacy or stability of residential situations with reform. Concern about the limited options available for affordable housing was common. The residential situation was an impor- tant factor in determining the structure of daily life for clients. Individuals who lived with family or in mental- health-supported housing lived more structured and so- cially active lives than those who lived in other situations. Hispanic clients were much more likely to live with fam- ily members than any other client group while clients in the high utilizer and community maintained groups were more likely to live in mental-health-supported settings. Family members were positive about mental-health- supported housing and many felt the RSNs should have placed a higher priority on developing more supported housing early in the implementation of reform.

The expansion of community support services by the Act was seen in the experiences of both clients and fam- ily members. The majority of clients in all of the groups received case management services and case managers were perceived as a primary source of community sup- port by both clients and family members. The increase in case management services was identified by many as one of the positive changes associated with implemen- tation of the Act. Although crisis services were expanded with the Act, many clients and family members were not aware of the changes and did not know how to access RSN crisis services through the 24-h emergency number. Case managers as well as informal networks were used

92 LINDA BROWN et al.

by both clients and family members in up to 50% of cri- sis situations. Family members who were aware of ex- panded crisis services were satisfied with the service but felt that earlier intervention to prevent crises needed to be strengthened.

Although normalization of life in the community through expanded opportunities for work and voca- tional services was an explicit goal of the Act, clients and families reported limited opportunities in these areas. Very few clients either worked or participated in any vo- cational activities. Among the barriers identified by cli- ents and family members, as well as by case managers, were high unemployment rates and difficult access to ap- propriate vocational training programs through the State Department of Vocational Rehabilitation.

Family members were more likely than clients to be aware of changes in the mental health system. Among the changes they identified were increased case manage- ment services, improved communication between fam- ilies and the mental health system, and less likelihood that their relative would be admitted to a state hospi- tal. Negative changes were seen as increased case loads for case managers and more turnover among case man- agers. Among the 25% of clients who were aware of sys- tem changes an increase in case management services was the most frequently identified change.

Family members in all of the client groups identified aspects of burden in caring for a mentally ill family member. The sense of burden was most acute among families of the young and middle-age high utilizer cli- ents whose frequent crises and use of the state hospitals left family members with a sense of always waiting to see what the next crisis might be. Family members of the Hispanic clients were less likely to report a sense of burden.

Overall, the experiences of clients and family mem- bers related to mental health reform reveals a system that is changing in directions specified by the Act.

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