quality of life in the evaluation of community support systems

Evaluation and Program Planning, Vol. 5, pp. 69-19, 1982

Printed in the U.S.A. All rights reserved.

0149-7189/82/010069-11$03.00/O

Copyright B 1982 Pergamon Press Ltd

QUALITY OF LIFE IN THE EVALUATION OF COMMUNITY SUPPORT SYSTEMS

FRANK BAKERAND JAMES INTAGLIATA

State University of New York at Buffalo

ABSTRACT

As a result of the authors’ experience in conducting an evaluation of the community support system (CSS) program in New York State, they have identified five reasons for focusing on quality of life (QOL) as a desired outcome for programs for the chronically ill. These reasons are presented and problems in QOL evaluative research are discussed. Psychological indicators are distinguishedfrom social indicators of QOL, and two methods of operationalizing perceived QOL, the psychological well-being and life domains methods, are examined. A conceptual model is presented and the results of an exploratory study of the QOL of I18 chronic psychiatric patients receiving CSS services are presented.

Deinstitutionalization of chronic mental patients which began in the early 1950s has continued into the 1980s. Recent efforts to prevent deinstitutionalization from becoming “transinstitutionalization” have cen- tered around attempts to develop community support systems to provide needed services to help clients con- tinue to live in the community rather than returning through the hospital revolving door. Nationally, attempts to develop a comprehensive system or network of components and services in the community have been stimulated by NIMH through its funding of community support programs (Turner & TenHoor, 1978).

New York State has made the development of community support systems the major goal in its own state- wide mental health programs. Such attempts to make sure the clients have access to relevant community ser-

vices and opportunities to develop life satisfaction require the conceptualization of a set of complex outcomes in order to evaluate these programs. The authors have been conducting a program evaluation project in New York State which is attempting to assess the quality of life (QOL) of chronically mentally ill persons who have been deinstitutionalized from state psychiatric centers and who are receiving community support systems (CSS) services (Baker and Intagliata, 1981). This paper reviews the reasons for focusing on quality of life as a desired outcome for this type of mental health program, some of the problems in quality of life evaluation research, definition of QOL methods for measurement, a conceptual model, and the results of an initial exploratory pilot study of quality of life of CSS clients.

REASONS FOR FOCUSING ON QUALITY OF LIFE

There seem to be a number of reasons for focusing on the best that one can hope for with present knowledge quality of life as a desired outcome for programs for is to comfort the suffering. In the case of long-term the chronically ill. These reasons include the follow- psychiatric patients, it is now generally recognized that ing: it is unrealistic to expect high levels of rehabilitation

for the majority of these clients and most will not 1. Comfort Rather than Cure return to competitive employment or attain a high level Some conditions are just not susceptible to “cure” and of social functioning. Lamb (1981) has recognized the

The authors gratefully acknowledge the research assistance of Diane Ruden and Jonathan Perry and the helpful comments and support of

Walter Furman, Director of the New York State Office of Mental Health (NYSOMH) Bureau of Program Evaluation. Portions of this paper

were presented at a conference, “Evaluating Quality of Life as an Outcome of Human Service Programs,” SUNY/Buffalo, June 25, 1980, and

at the 1981 Annual Eastern Psychological Association Meeting in New York, April 21, 1981. This research was supported in part by a NYSOMH contract with Psychotechnical Applied Research Organization, Inc. Requests for reprints should be sent to: Frank Baker, SUNY

Buffalo, Department of Psychiatry, 2211 Main St. -Building E, Buffalo, NY 14214.

69

IO FRANK BAKER and JAMES INTAGLIATA

importance of scaling down one’s expectations from such lofty goals to a more realistic perspective about what can be achieved with this population. He describes it as follows:

We need to realize that if we can ‘only’ improve the quality of life of these patients and make them feel comfortable living low-energy but satisfying lives in a non-hospital environment, we have taken a great step forward in the management of the long-term mentally ill and in making real the benefits expected of deinstitutionaiization. (p. 1W

and the public into the planning, governance, and evaluation of human service systems. After all, it is difficult to ultimately justify a program if a client’s life situation is not improved in some way and if the client is not happier or more satisfied after being exposed to the program.

2. Complex Programs Require Complex Outcome Measures A complex set of interventions is involved in the pro- vision of the various life supports being attempted through the community support system’s initiatives. The desired outcomes of such programs are com- plicated and difficult to measure directly, since the currently available measures are somewhat primitive and insensitive. A multi-dimensional variable such as quality of life serves to offer the hope of assessing the synergistic interaction of a number of smaller, less powerful outcome variables.

4. Reemergence of the Holistic Perspective We seem to be returning to a focus on the “whole person” that characterized the treatment of ailments before the development of the extensive specialization and corresponding division of labor which characterize modern health care (Baker, 1974; Tubesing, 1979). In- creasingly a “problems-in-living” definition of client troubles is being applied and quality of life offers a way of looking at the whole life situation rather than narrowly focusing on pathology. This is consistent with the move made by the World Health Organiza- tion (WHO) some years ago which took a step away from the narrow definition of health as merely the absence of disease and adopted a definition of health as a “state of complete physical, mental and social well-being.”

5. QOL is Good Politics

3. Keeping the Customer Happy It does not appear to be coincidental that widespread interest in quality of life has developed at the same time that a related concept “client satisfaction” has emerged as a priority for program evaluation (Bartlett, in press). We live in an era of “accountability,” and consumer involvement in health systems agencies, community mental health boards and a variety of other organizational mechanisms set up to bring the client

Many of those who write about quality of life trace its current popularity back to the use of the term in the 1960s in a speech about the Great Society given by President Lyndon Johnson. To balance the politics, some note that President Nixon emphasized concepts of quality of life in a later speech. However, one can go back further than that; and in the United States concern for the general welfare, well-being and related concepts has certainly existed as far back as the writing of the Constitution.

PROBLEMS IN QOL EVALUATIVE RESEARCH

There are a number of problems which have to be faced by a program evaluator interested in quality of life. These include:

(1.) Theoretical insufficiency, (2.) Definitional ambiguity, (3.) Insensitivity of QOL measures, (4.) Need for data on normal fluctuations in QOL

measures, (5.) Need for norms of target populations, and (6.) Need for more consumer perspective on QOL.

Theoretical Insufficiency The theoretical basis underlying virtually all work on psychological indicators of quality of life is surprisingly simple. For example, happiness is viewed as a surplus of good feelings over bad feelings. While this concept is in the best hedonistic tradition, it does not address the generation of good and bad feelings. We cannot account for why some experiences are viewed as pleas-

ant under certain conditions by certain people and why other experiences may not be seen as pleasant. Inade- quate theoretical models present problems for program designers who intend to affect psychological well-being and for program evaluators, it complicates the task of specifying what aspects of psychological well-being will be affected by services or aspects of services.

Definitional Ambiguity A confusing panoply of terms is used in discussing various aspects of the quality of life. The research literature on quality of life does not utilize consistent definitions of basic terms. This poses special problems for the evaluator, and some effort has to be given to developing standard definitions if we are to advance further.

Insensitivity of Quality of Life Measures It is not clear that available measures are sensitive enough to detect the changes produced by a program.

Quality of Life 71

Clearly, additional work has to be done to develop measures which are sensitive to the changes being evaluated.

Need for Data On Normal Fluctuations in QOL Measures One of the other problems we have with quality of life measures is that we don’t know very much about the normal fluctuations in QOL that occur independent of exposure to specific programs. We do have some information regarding mood states that suggests the importance of this kind of research. Studies of mood (Wessman & Ricks, 1966) show that there are daily fluctuations in mood states independent of any particular intervention. If we are to attempt to assess change effects, it is necessary to have studies that repeat quality of life measures over time to determine what are normal fluctuations.

populations of particular interest to evaluators. There- fore, it would seem useful to begin to gather normative data for populations who are targeted to benefit from human service programs. These include not only the mentally ill, but also the mentally retarded, people suffering from life-threatening diseases, patients recover- ing from major surgery, and a variety of other such high-risk groups targeted for program intervention.

Need for Norms on Target Populations The measures developed on normal populations have not been used very extensively, if at all, with client

Need for More Consumer Perspective on Quality of Life There is still some question of whether we know enough about how individuals view their lives and particularly what are the relevant dimensions for those trying to deal with some major illness or problem in living. For this reason, it is not only important to develop normative data using existing structured measurement tools, but it is also important to do more open-ended interviews and other kinds of exploratory data gather- ing so that we can have a better understanding of what the relevant dimensions of quality of life are with particular populations.

DEFINITION OF QUALITY OF LIFE

Before continuing our discussion of quality of life as it may relate to program evaluation of human services in general and community support systems in particular, it is appropriate to give some attention to definitions. One cynical reviewer of the literature has suggested, “There are as many quality of life definitions as there are people” (Liu, 1976). One might amend this definition and say that there are at least as many quality of life definitions as there are people studying the phe- nomenon and certainly writers in the field have not done very much to achieve definitional consistency.

In general, people who focus on the objective conditions of life usually call these variables “social indicators.” They attempt to develop statistical indices analogous to the measures of economic well-being which can be applied to comparisons of communities. They use data gathered from the Census Bureau or other governmental administrative reports and make comparisons using indices such as per capita income, crime rate, number of physicians per thousand, and unemployment rates.

Some writers have argued that quality of life is most usefully defined as the availability of societal resources, as for example, McCall (1975), who states, “QOL consists in the obtaining of the necessary conditions for happiness in a given society or region.” Some authors emphasize the subjective aspects of life experience and ask individuals to report their subjective feelings, as for example, Dalkey and Rourke (Note 2), who report that: “In our instructions to the subjects we define the term ‘quality of life’ (QOL) to mean a person’s sense of well-being, his satisfaction or dissatisfaction with life, or his happiness or unhappiness.”

At the level of “psychological indicators” which deal with the phenomenological experience of life by individuals, two major approaches appear to have been used in operationalizing perceived quality of life: (1) a global measure of well-being, happiness or satisfaction is used as a criterion and a variety of more specific measures are studied as they relate to it, and (2) specific life domains are identified conceptually and/or empirically, and quality of life is defined in terms of an individual’s reaction to these specific life areas. Let us now examine these two approaches in more detail.

Psychological Well-Being Thus the literature seems to divide into “objec-

tive” QOL variables and “subjective” QOL variables. Zautra and Goodhard (1979) note the importance of considering both types of variables: “Essentially QOL pertains to the ‘goodness of life.’ We will take the view that this ‘goodness’ resides in the quality of the life experience, both as subjectively evaluated and as objectively determined by an assessment of external conditions.”

With the publication of Marie Jahoda’s book, Current Concepts of Positive Mental Health, in 1958, positive mental health as opposed to mental illness was estab- lished as a legitimate topic for study. In the early 196Os, Bradburn and Caplovitz (1965), of the National Opinion Research Center sought to develop survey research measures of the mental health of individuals. They were attempting to operationalize the notion of situational “difficulties in living” (Bradburn, 1969).

12 FRANK BAKER and JAMES INTAGLIATA

This focus on problems-in-living led them to concen- trate on the self-reports of individuals concerning their happiness, life satisfaction, or psychological well- being. One of the main products of the efforts of Bradburn and others was a lo-item scale which has been used in a number of studies (Andrews & Withey, 1976; Baier, 1974; Beiser, 1974; Berkman, 1971). Since Bradburn was concerned about short-term situational stress as related to psychological well-being, his inter- viewers asked whether the respondents had felt any of 10 different ways “during the past few weeks.”

Bradburn (1969) found that the 10 questions formed two five-item clusters according to whether an item asked about a positive or negative feeling. He named these two five-item clusters the Positive Affect Scale and the Negative Affect Scale. To the surprise of Brad- burn and other researchers, the scores on these scales were found to be independent and to some extent seemed to be correlate with different variables. Brad- burn (1969) saw negative affect scores as related “primarily to variables that have been dealt with by the traditional ‘mental illness’ approaches” (p. 12). These particular variables showed no association with positive affect scores. Bradburn later theorized that people’s feelings of psychological well-being were com- posed of two subjective feeling states, positive and negative affect, which could vary independently. He concluded that overall sense of psychological well- being was a function of the difference between one’s levels of positive and negative affect, and he opera- tionalized this concept by constructing an Affect Balance Scale (ABS) which was calculated as the difference between a person’s scores on the positive affect scale and the negative affect scale. Later researchers have expressed doubt about the usefulness of Brad- burn’s balance model. For example, Cherlin and Reeder (1975) question the use of difference scores and the underlying balance model and suggest that more information is obtainable from examining the separate scales. They quote a personal communication to them in which Bradburn is said to have commented: “Even as I was working on the book, it began to be clearer to me that the most interesting findings were in the separate relations between variables and the positive and negative affect measures, and that the combined scores did not add anything; indeed, often they obscured what was really going on” (Cherlin & Reeder, 1975, p. 211).

We will have more to say about the Bradburn scale in describing its application to a sample of CSS clients later in this paper, but first let us look at an approach to examining various domains.

Life Domains Another method that has been used in attempting to understand subjective quality of life has been to ques-

tion respondents about various dimensions of their lives. Flanagan (1978) provides an example of an attempt to identify relevant life domains empirically. On the basis of a review of 6500 critical incidents collected from nearly 3000 people of various ages, races and backgrounds, representing all regions of the country, he identified 15 factors defining quality of life. He then grouped these 15 categories into five general dimensions of quality of life including: (a) physical and material well-being; (b) relations with other people; (c) social, community, and civic activities; (d) personal development and fulfillment; and (e) recreation. Table 1 presents Flanagan’s 15 life domains grouped into the five general dimensions and compares them with the list of life domains identified by Blau (1977) from a study of dimensions of life identified in interviews with therapy patients, and with some dimensions studied in national surveys by Campbell, Converse and Rodgers (1976) and Andrews and Withey (1976). Dalkey (1972) has also reviewed life domains and his categories are listed for comparison purposes. Ex- amination of these particular domain uses and others reveals certain dimensions which are common across most of the studies. These include: work; leisure; relations to family members; relations with friends; financial situation; health, social and physical environment; and aspects of self-fulfillment.

The dimensions related to the self vary widely. Some researchers have used Maslow’s hierarchy of needs as a basis for identifying life domains and even those who have not consciously done so seem to agree to a remark- able extent about the necessity of considering not only the critical aspects or physical needs of people but also some of the higher level needs. Bigelow and Brodsky (Note 1) in their discussion of QOL as it relates to CSS programs, use the Maslow hierarchy of needs to dis- cuss role opportunities and demands provided by various life situations for patients.

In relating such approaches to the external environment it is useful to have a conceptual model and that will be our next topic for discussion.

A Conceptual Model Figure 1 presents a simple model of relationships between external environments, individual experience, individual health status and quality of life responses which may help to point out some differences between the various approaches to the assessment of quality of life. As noted in the Figure, Focus 1 is primarily concerned with describing the objective environment. Focus 1 represents the area of concern of those who attempt to do numerical counts of various social phe- nomena or rates of change of such numerical counts - the area of focus on social indicators. Aspects of the physical, social, economic, political and cultural environment are all of possible concern.

Quality of Life 73

TABLE 1

QUALITY OF LIFE DOMAINS

Campbell, Converse Andrews & Withey, Flanagan, 1978 Blau, 1977 & Rodgers, 1976 1976 Dalkey, 1972

Physical & Material Well-Being

1. Material well-being and financial security

2. Health & personal safety Relations with Other People

3. Relations with spouse 4. Having & raising children

5. Relations with other

relatives 6. Relations with friends

Social, Community and Civic

Activities 7. Activities related to

helping or encouraging

other people 8. Activities related to local

& national government Personal Development and

Fulfillment 9. Intellectual development

10. Personal understanding and planning

11. Occupational role (job) 12. Creativity and personal

experience Recreation

Earning

Eating; Sleeping

Loving Parenting

Social contact

Environment

Self-acceptance

Working

Financial situation;

Housing Health

Housing

Family life Family life

Friendships

Community; Organizations

Organizations

Status; Novelty

Job Job

13. 14.

15.

Socializing Passive/observational recreational activities

Active/participatory

recreational activities

Leisure; Nonwork activities

Social Contact

Religious faith

Security Affluence

Health

Neighborhood

National government

Spare time activities

Activity Sociality

Freedom;

Aggression

With Focus 11 we move from the external environment to a concern for what goes on within the person, particularly in terms of the perceived attributes of the physical environment. It is here that recognition is given to the fact that everyone does not see the world in the same way. This is what Campbell, Converse and Rodgers (1976) talk about when they note that “people live in an objectively defined environment, but they perceive a subjectively defined environment, and it is to this psychological ‘life space’ that they respond” (p. 13). We mentioned earlier that it is common in the QOL literature to divide up the environment into different domains. Although the actual names and number of domains of quality of life vary from writer to writer, it is usually recognized that people tend to separate out their perceptions of the material aspects of the environment from the social aspects, and from those things which have to do with activities.

The actual state or degree of health and well-being of an individual is represented by Focus Ill in the model. The internal states of the person- one’s needs,

desires, knowledge, beliefs, values and attitudes are of concern here. Some QOL researchers have been concerned about comparison between perceptions (Focus 11) and needs (Focus 111) and suggested that degree of satisfaction is related to the degree of fit. For example, Andrews and Withey (1976) reacting to a model of person-environment fit proposed by French, Rodgers and Cobb (1974) conclude:

Although the person-environment fit model is not a fully proven theory, we concur with its suggestion that satis- factions (and also evaluations of life aspects) are probably the result of some comparisons between a perception of the environment and a set of needs or aspirations. (p. 16)

Zautra and Goodhart (1979) also point out the importance of comparisons between perceptions and current levels of need and the relevance of adaption-level theory to QOL research. They observe that the level of adaptation acts as a standard which “affects people’s appraisals of their QOL by influencing the degree to


FOCUS I

ENVIRONMENTAL SYSTEM

l Physical

l Social

l Economic

l Political

l Cultural

T

FOCUS II*

EXPERIENCED ENVIRONMENT

(Life conditions and events as perceived)

MATERIAL l Housing

l Food

l Air

l Water

l Possessions

l Financial

l Transportation

SOCIAL l Family

l Friends

l Community

ACTIVITIES l Work

l Leisure

l Creative

l Religious

FOCUS Ill* FOCUS IV

BIO-PSYCHO SYSTEM

(Individual Internal States, “Health” Status)

PHYSICAL STATUS l Nutrition

l Fitness

l Etc.

MENTAL STATUS l Self-Esteem

l Sense of Purpose

l Personal Involvement

l Security, Etc.

NEED LEVELS

KNOWLEDGE

BELIEFS & ATTITUDES

BEHAVIOR

l Coping

l Adaptation

l Reports on QOL

(satisfaction,

haDDiness.

‘FOCUS II and FOCUS Ill are within the person.

Figure 1. Model of Relationships Between External Environment, Individual Experience, Individual Health Status and QOL Responses.

which positive experiences contribute to life satisfac- just to painful life experiences but they also actively

tion and negative experiences to distress” (Zautra & seek to increase skills, competence and to change the

Goodhart, 1979, p. 5). environment (Zautra & Goodhart, 1979). Also, of

Finally, we turn to Focus IV which is concerned with course, it is through their behavior, particularly their

the behavioral outcomes of the person’s encounters behavior in response to questionnaires and interviews,

with various environmental situations. Individuals that we learn about their perceived levels of quality of

cope, adapt and do what they can to deal with unplea- life.

sant environments. They not only seek to avoid or ad-

EXPLORATORY STUDY OF QOL OF CSS CLIENTS

Now we turn to a pilot study of the perceived levels of quality of life of a group of chronically ill persons. As part of a much broader ongoing evaluation of the ef- fectiveness of New York State’s Community Support System program, the authors conducted an exploratory study of the quality of life of a sample of the chronic psychiatric patients receiving CSS services. The initial data that will be presented here are based on a sample of 118 clients selected from two CSS programs in the western region of the state. The first program is funded through a private voluntary agency and serves both an urban and a rural area; the second program is based at a state mental hospital and serves a primarily rural area.

Method A variety of data were gathered on all 118 clients in the sample, including demographic information (age, sex, type of residence) gathered from agency records, ratings of health and mental health status made by each client’s case manager which included the Global

Assessment Scale (Endicott, Spitzer, Fleiss & Cohen, 1976), and two brief subjective measures of Quality of Life administered to clients by their case managers in a face-to-face interview, including the Affect Balance Scale (Bradburn, 1969) and a self-report measure of clients’ satisfaction with 15 major life domains.

As noted above, the Affect Balance Scale was developed by Bradburn (1969) as a measure of psychological well-being. It consists of 10 questions, five of which ask about the respondents’ recent positive affective experiences and the other five which focus on recent negative affective experiences. On the positive side, respondents are asked whether they have during the past two weeks felt particularly excited or interested in something, proud of having been complimented, pleased at having accomplished something, on top of the world, or that things were going their way. The negative experiences which are probed deal with whether the respondent has felt too restless to sit still, lonely or remote from other people, bored, depressed or upset about being criticized.

Quality of Life 75

The Satisfaction with Life Domains Scale (SLDS), a residence. With respect to primary psychiatric diag-

measure of respondent satisfaction with various life noses, 55.9% were classified as schizophrenic, 13.6%

areas was constructed by adapting the “faces” response as affective disorders, 5.1% as substance abuse, 3.4%

format developed by Andrews and Withey (1976) to as organic mental disorders, with the remaining clients

assess client’s satisfaction regarding 15 life domains. distributed among a variety of other diagnostic catego-

The respondent is asked to indicate his/her feelings by ries. All of the clients had met the eligibility require-

choosing one of seven faces ranging from a “delighted” ments specified by New York State for the CSS pro-

face with a large upturned smile (scored 7) to a “terri- gram. Specifically, all had had significant histories of

ble” face with a deep frown (scored 1). The CSS clients psychiatric hospitalization in state facilities or were

were asked to pick the face that best represented their judged to be significantly impaired in their community

degree of satisfaction with the following life areas: functioning due to chronic psychiatric illness.

Results (1.) Their house/apartment/place of residence. (2.) Their neighborhood as a place to live. (3.) The food they ate. (4.) The clothing they wear. (5.) Their health. (6.) The people they lived with. (7.) Their friends. (8.) Their relationship with their family. (9.) How they get on with other people.

(10.) Their job/work/day programming. (11.) The way they spend their spare time. (12.) What they did in the community for fun. (13.) The services and facilities in their area. (14.) Their economic situation. (15.) The place they live in currently compared with

the state hospital.

In addition to data gathered on the entire sample of 118 CSS clients, lengthier open-ended interviews were conducted with a subsample of 20 clients. These interviews were designed to gather more extensive information from clients regarding the 15 major domains of their life that were briefly assessed with the SLDS. These open-ended interviews generally lasted about one hour and were conducted by a trained member of the evaluation team staff. The intent of conducting these interviews was to develop a more qualitative sense of the patients’ life experience that might be used to complement and validate the quantitative self-report QOL measures administered by their case managers.

Pilot Study. In order to illustrate the usefulness of an in-depth view of client perceptions of various aspects of their lives, let us briefly consider two clients with whom our staff conducted the lengthy open-ended interview. In comparing these clients, we have examples of two extremes. One client, Karen, has a very positive view of most life areas, and the other, Tony, displays an extremely negative view of at least half of the life domains covered in the interview. The young woman with the very positive view of her life seemed objectively to have a number of positive things in her environment including a number of helpers, family, a nice place to live, and more than adequate resources. By contrast, Tony has few social supports and lives an essentially isolated existence in one room without adequate fur- niture, his own kitchen, or bath facilities. While Karen has many helpers, including not only a case manager but also a therapist and a visiting nutritionist, Tony has only a case manager who is just beginning to get to know him. He has recently gone through the loss of his earlier residence and all his possessions because of ar- son. Tony’s essentially negative description of life on the faces scale is matched by his interview description of a series of stressful recent experiences and major deficits in his current living situation.

Subjects The ages of the 118 clients in the sample ranged from 20 to 86 years with an average of 53.3; 61% were females, 39% were males. Regarding community living arrangements, 42% resided in formally supervised set- tings including 25% in adult homes, 14% in family- care homes, 2% in skilled nursing homes, and 1% in group homes. The remaining respondents living in set- tings without formal supervision included 8(‘1o in board- ing or rooming houses, 7% in a private residence with their spouse, 16% in a private residence with parents or other relatives, 5% in a private residence with unrelated others and 22% were living alone in a private

In descriptive terms, the overall picture that emerges from the 20 in-depth interviews is of a life that, by normal standards, is at least somewhat restricted. Some clients seem socially isolated to an extreme degree, so that the extent of their contacts is with only two or three other persons. Other clients, though by no means isolated, do not have satisfying relationships with their families or acquaintances. Another life domain which causes severe difficulties for these individuals is financial security, their funds being largely limited to the amount they receive from public welfare sources. For some clients the amount that they currently receive is barely enough to live on. Some clients express concern about recent changes in government policies and what this will mean to their economic situations. Func- tional limitations associated with their disorders as well as personal preferences and interests appear to play important roles in determining the life quality of the chronically mentally ill who were interviewed and


provide constraints on the outcomes of the CSS program.

Brief Self-Report QOL Measures. Because the brief self-report measures yielded results generally consistent with the more extensive interview, only the brief measures were used in studying the overall client sample (n = 118). The two quantitative measures of QOL that were used in this exploratory study were Brad- burn’s Affect Balance Scale (ABS) and the Client Satis- faction with Life Domains Scale (SLDS) described above. Table 2 presents the proportion of CSS clients recalling positive and negative experiences in response to the Bradburn Scale items in the present study. For purposes of comparison, the results of administering these items to a national sample in 1978 (Campbell, 1981) are also presented in this table.

As was the case with the national sample, the CSS clients were generally more likely to remember positive experiences than negative ones. The specific percentages varied with the particular wording of the questions, but there is an overall pattern of noticeably fewer CSS clients remembering positive experiences in the past few weeks than the national sample.

As compared to the general population, the CSS clients appear to have little in their lives to feel particularly interested in or excited about and have con- siderably fewer opportunities to feel pleased about personal accomplishments or to receive compliments about these accomplishments. However, there is little difference in the proportion of CSS clients and the national survey group who feel “that things are going their way” and 7% more of the CSS clients say they

have felt “on top of the world” in the past few weeks. This may reflect some confusion about the wording of these statements for the clients or it may simply have been a relative judgment on their part, comparing their current living situation in the community with their previous experience of psychiatric hospitalization.

With regard to the measures of negative affect, the CSS clients were much more likely to report negative feelings than were persons in the national sample. Specifically, CSS clients were generally twice as likely to report such negative experiences as “feeling very lonely or remote from other people,” “bored,” and “depressed or very unhappy.” These results are consistent with interviewer observations that these clients have relatively few social interactions and little to do during their waking hours. In summary, CSS clients were generally less positive about their experiences than the general population sample and were significantly more likely to report negative experiences.

Table 3 presents the distribution of CSS clients’ responses to the Satisfaction with Life Domains Scale. For purposes of comparison, the results of administering items with a similar wording to a national sample (Andrews & Withey, 1976) are also presented in this table.

As was the case with the studies of Andrews and Withey with the Faces Scale, there is a substantial clustering of responses at the positive end of the scale. Even with the skewness in the distribution, there are some differences that can be noted. For example, it is clear that the most positive feelings are expressed about the place where the client lives at the time of the interview compared with the state hospital, and the

TABLE 2 COMPARISON OF CSS CLIENTS AND NATIONAL SURVEY RESPONDENTS ON PERCENTAGES OF YES RESPONSES

TO BRADBURN SCALES OF POSITIVE AND NEGATIVE AFFECT

CSS Clients National Survey*

Items 1981 1978

Positive Affect During the past few weeks have you ever felt:

Particularly excited or interested in something? 61 74 Proud because someone complimented you on something you had

done? 66 77 Pleased about having accomplished something? 65 a7 On top of the world? 49 42 That things were going your way? 72 74

Negative Affect So restless ths: you couldn’t sit long in a chair? 49 46 Very lonely or remote from other people? 61 24 Bored? 70 30 Depressed or very unhappy? 56 30 Upset because someone criticized you? 29 22

Number of cases 118 3692

*These results of an administration of the Bradburn Affect Balance Scale to a national survey sample are from Campbell

(1981).

Quality of Life II

TABLE 3 PERCENTAGES OF RESPONSES OF CSS CLIENTS TO FACES SCALES OF LIFE DOMAINS

Life Domain Questions

sample mean

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

15.

Which face comes closest to expressing how you feel

about your house/apartment/place of residence? Which comes closest to expressing how you feel

about this particular neighborhood as a place to

live? Which comes closest to expressing how you feel about

the food you eat? Which face comes closest to expressing how you feel

about the clothing you wear? Which comes closest to expressing how you feel about your health? Which face comes closest to expressing how you feel

about the people you live with? Which comes closest to expressing how you feel about your friends? Which comes closest to expressing how you feel about

your relationship with your family? Which comes closest to expressing how you feel about how you get on with other people? Which comes closest to expressing how you feel about your job/work/day programming?

Which face comes closest to expressing how you feel

about the way you spend your spare time? Which comes closest to expressing the way you feel about what you do in the community for fun? Which comes closest to expressing how you feel about the services and facilities in this area?

Which comes closest to expressing how you feel about your economic situation? Which comes closest to expressing how you feel about the place you live now, compared with the state

hospital?

25 32

21

(::,

29

(&

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(Z, (Z)

(Z, (Z)

18

(Y,

23

(::,

:94

73 16

(ii) (ii)

10

14

:;

12

(i)

2:,

10

(:Y,

294

19

(:Y,

(Z,

3

t:,

t:,

3

5 13

(5)

5

(:)

(Y)

1

(:)

(:)

9

(:,

;2q,

2

7 2

2 6

(i, (i,

3

(b

(:,

6

(2,

(Z,

1

2

(b 10

(0)

4

(:,

(Y)

5

(:I 10

(5)

3

5.51

5.38

5.37

5.17

4.75

5.59 5.65

5.16

5.46 5.27

5.10

4.82 5.25

4.56

6.39

A’ = 118 *The numbers in parentheses are percentages from a national survey using similar wording (Andrews & Withey, 1976). 7 = delighted; 1 = terrible

most negative feelings are expressed about his or her current economic situation and health. Combining the neutral and three frowning faces, it appears that the areas which have the largest proportion of neutral or unhappy feelings include not only their economic situation and health, but also the way clients spend their spare time, their relationships with family, the clothing they wear, and the services and facilities available in their area.

Relationships Between QOL Measures. When clients’ scores on the ABS and SLDS were related to other client data, the results were generally consistent with those reported in the QOL literature. To begin with, clients’ affect balance scores and total satisfaction scores on life domains were positive and quite signif-

icantly related to each other (r = .64, p < .OOl). Thus, although they represent two somewhat different approaches to assessing clients’ subjectively experienced quality of life they apparently tap common dimensions of life satisfaction.

Regarding demographic characteristics, age, sex and residence type were not significantly related to CSS clients’ ratings of the overall life quality. However, younger clients were significantly more likely (r = - .18, p < .05) than older clients to report negative affective experiences on the Bradburn Affect Balance Scale. These results are generally consistent with the QOL literature which has reported no strong or consistent relationships between these demographic factors and general life satisfaction among samples of “normal” adults (Cameron, 1974; Dickie, Ludwig & Blauw,


1979; Edwards & Klenmack, 1973; Palmore & Luikart, on both the ABS (r = .17 p < .05) and on the SLDS 1972). (r = .29 p < .OOl). As with the findings regarding

While client demographic characteristics were not demographic characteristics, these results are quite significantly related to their overall quality of life consistent with the general QOL literature. In fact, the scores, ratings of clients’ mental health status were significant positive relationship between health/mental quite significantly related to their reported life quality. health status and subjective quality of life is one of the Specifically, clients’ mental health status, as measured strongest and most consistent findings in this litera- by the Global Assessment Scale, was positively and ture. significantly related to clients’ self-reported life quality

SUMMARY

The findings of our exploratory study regarding the quality of life of CSS clients were generally encouraging. The two brief self-report QOL measures used seemed to provide data that reasonably reflected actual variation in the life quality of CSS clients, though there were some problems of positive response bias with the Satisfaction with Life Domain Scale. Such a finding is similiar to that typically reported in consumer satisfaction research, where levels of reported satisfaction often range from 70 to lOO%, regardless of the client population doing the ratings (Bartlett, in press).

It is difficult to determine to what extent the results in consumer satisfaction studies and in this particular form of rating of life domains reflect an expression of dependency needs or a desire to please the interviewer. Perhaps they represent a “grateful testimony” reflect- ing the client’s being glad to be out of the hospital in whatever kind of situation they may be in and to be receiving case management services. There appears to be no way to completely determine whether the high levels of positive feelings represent a sincere evaluation of aspects of the clients’ lives and reflect the client’s actual perceptions of the environments or are due to grateful testimonials or other biasing factors. The answer probably lies somewhere in between.

Despite skewness in clients’ responses, the QOL measures used did show the expected variations in

satisfaction with different life domains. Clients in- dicated that they felt least satisfied with their economic situations, use of leisure time, and their health; they displayed greatest satisfaction with being out of the hospital. Further, the relationships found between individual client characteristics and their overall reported life quality are consistent with those found throughout the QOL literature.

The willingness of the CSS clients to report more negative feelings on the Bradburn negative affect items is consistent with other studies which have suggested that these items are to some degree a measure of mental illness (e.g. Beiser, 1974). The negative feelings expressed are also more consistent with the privation of these clients’ lives than some of their responses to positively worded items. It does raise questions about the program’s effects that only repeated administration of the measures can answer.

In conclusion, it appears the focus on quality of life in the evaluation of community support systems for chronic psychiatric patients is both feasible and war- ranted. Given the unavailability of norms to provide a standard by which to judge such programs, perhaps the best evaluative strategy will be to focus on changes in the perceptions of clients receiving the services of a CSS program and those who are in other programs or not receiving this type of aftercare service.

REFERENCE NOTES

1. BIGELOW, D. A., & BRODSKY, G. A theory of mental health.

Unpublished manuscript, Oregon Mental Health Division, 1978.

2. DALKEY, N. C., & ROURKE, D. L. The Delphr procedure and raring quality ofhfefactors. Unpublished manuscript, University

of California at Los Angeles, undated.

REFERENCES

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quality of life in the evaluation of community support systems

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