Quality of Life and Mental Health Services

Keith Bridges, Dr Peter Huxley, Peter Huxley, Hadi Mohamad, Joseph Oliver

• Publisher: Routledge
• Year: 2005
• ISBN:
  9781134719426
• Edition: 1
• Topic: Psychology
• Subtopic: Psychotherapy
• Index: Psychology

This book is about the lives of patients, about the health and social care services provided to help them, and about ways of examining the impact these services make on them. Based on the authors' experience of using and developing a particular operational measure, the Lancashire Quality of Life Profile, which has been used successfully in many different studies and countries, it provides managers and practitioners in mental health with valuable normative data, insights and ideas about the role of QOL in service evaluation.

Part I
Concepts and theory

Chapter 1
Definitions and conceptual issues concerning
quality of life

INTRODUCTION

In 1985, our UK research began into the quality of life of clients on the caseloads of social and health care agencies in the north-west of England (Oliver 1991a). At that time, the term had only recently been applied to chronically mentally ill people, with most research until then concentrating on the ‘adverse effects of the treatment and indirect effects of the illness’ (Tantam 1988:243). Arguably, the most striking work existing in respect of the quality of life of long-term mentally disordered people had appeared in papers by Baker and Intagliata (1982) and Lehman (Lehman et al. 1982; Lehman 1983a). Stimulated by these studies, our research began as an attempt to incorporate this research into the UK context.

RATIONALE FOR EMPLOYING QUALITY OF LIFE MEASURES

Before going on to look at the various stages and products of our endeavours, we wish to review briefly some basic elements of life quality research, particularly as they apply to mentally ill people. These have very much influenced our thinking as we have progressed. Those readers who are well versed in this subject will find the following discussion largely familiar.

Various writers have discussed the reasons for making life quality a focal point for mental health evaluation. Some of the reasons are simply negative, dwelling on all the things which are incorrect in the way that we conceptualise mental disorders and treat people with them; others are more positive, focusing on potential gains to the client, the helping professions and the general community of focusing on life quality issues. It is safe to say that while the overwhelming majority of readers will prefer the latter, most will accept that both types of reasons are legitimate. Hence, we begin with a consideration of why quality of life has come to assume an increasingly important place in the evaluation of services for mentally disordered people. While the list of reasons which we offer is by no means meant to be exhaustive, its length serves to give some justification for our concentration on this subject, as well as its growing popularity.

Baker and Intagliata (1982) have suggested the following reasons (1–5):

1. Comfort not cure. As most severely disabled psychiatric patients cannot realistically be expected to regain full levels of functioning, treatment and rehabilitation should have more modest goals. Traditional measures of the effects of illness have focused on ‘traditional medical outcomes: mortality and symptom severity’ (Tantam 1988:243). However, in mental disorders, ‘not only is the mortality low, but the disability produced by identical impairments varies from person to person depending on their own appraisal of them and on the presence or absence of counter-acting social factors’ (Tantam 1988:243). Maintaining a satisfactory quality of life is a realistic goal for service providers and one which is acceptable to patients.
2. Complex programmes require complex outcome measures. Psychiatric patients and their conditions are complex and so are their treatments. Broad-based concepts and multi-dimensional scales to operationalise outcomes are more likely to be valid than less complex ones. Quality of life is one such broad-based concept which frequently results in a multi-dimensional set of measurements (Fillenbaum 1985).
   Another related point is that traditional measures of effectiveness do not presume unwanted negative side-effects of the treatment intervention. In the case of certain drugs used for schizophrenia, and other illnesses such as some forms of cancer, the magnitude of the unwanted side-effects of the treatment are of the same magnitude as the symptoms themselves. Therefore there has been recognition of the need to widen the assessment of benefit to include these indirect effects of illness and treatment (Goldberg and Jones 1980). Under such conditions, ‘as far as quality of life is concerned, it is less important to know whether a treatment is effective, than whether it is desirable’ (Tantam 1988:244).
3. Keeping the customer happy. In an era of increased accountability and consumer involvement, service providers must be seen to address individual needs. Life quality measures ensure that the focuses of treatment and other service provisions remain on individualised improvements following exposure to interventions.
4. Re-emergence of the holistic perspective. There is a gradual turning away from narrow views of the patient’s life predicaments in favour of seeing them in their ‘person-situation configuration’. Also there is movement away from concentration on narrow pathology levels and types and towards health promotion, a much wider idea implying a ‘state of complete physical, mental and social well-being’ (WHO 1991:5). The scientific challenge is one of describing adequately the totality of a patient’s existence, not simply part of it, thus producing a holistic, comprehensive model. Hence, ‘the patient’s existential situation is the outcome criterion’ (Malm et al. 1981:478).
5. Quality of life is good politics. In the USA, the emphasis on the ‘pursuit of happiness’ is enshrined in the Constitution. The ‘feel-good factor’ is a recognised motivation in voting patterns. ‘Quality time’ has become a sought-after element of family life. A range of life quality dimensions are becoming the legitimate aspirations of citizens, to be pursued by politicians on their behalf. This suggestion has been mirrored by Zautra and Goodheart (1979), who emphasised that people are interested in knowing about this subject in an attempt to increase the quality of their own life.
   
   Our own research (Oliver 1991a) has produced a number of further reasons for employing quality of life measurements. Three more (6–8) are:
   
   
   
6. Acceptance by patients and relatives. In order to succeed, the implementation of any system of evaluation requires the consent and cooperation of patients and their relatives. Life quality measures are positively regarded, and compliance rates with interviews, and especially re-interviews, are high. Importantly, many clients find such interviews intrinsically therapeutic and empowering (because they focus on areas which are of central importance to them).
7. A common basis for multi-disciplinary work. Many mental conditions are the result of multiple causative factors (overdetermined), with treatment involving a variety of professionals with divergent, sometimes opposing, views. Under such circumstances, the means of evaluation can easily become controversial, providing a focus for disagreements and professional rivalries. Quality of life measurements are sufficiently wide to encompass many perspectives, proving acceptable to a range of different practitioners and thus encouraging teamwork.
8. Economical measurements for underfunded targets. In both health and social care settings, mental illness services are universally regarded as low priority and are, hence, underfunded. Among these, the chronic services are lower priority than the acute. Evaluation is lower priority than service delivery. In fact, neither money nor time is readily made available for such tasks. Brief quality of life measures can be employed without adding appreciably to the agency wage bill, thus overcoming worker and management resistance to doing evaluative work.
   
   Closely related to this is the fact that in a time of diminishing financial resources, services are increasingly called upon to justify costs. However, in the health field, gains cannot always be expressed in monetary terms and concern the quality of life of carers as well as patients. In cost-effectiveness analysis these less tangible benefits can be quantified in terms of the cost of the interventions which are required to demonstrate change. In order to demonstrate change, standardised scales should be employed; this makes possible the comparison of different interventions and services.
   
   In our reading we have encountered many other authors who have also suggested reasons for including quality of life measures such as:
   
   
9. Technical advances in data processing have made studies of communities, individuals and even nations more feasible. This is especially true when powerful statistical packages and the computers on which to process vast amounts of data rapidly are available to clinical practitioners and local service managers (Zautra and Goodheart 1979).
10. Studying quality of life helps planners to avoid mistakes made previously. Social and behavioural research has confirmed that the social environment has a major influence on the causes, courses and outcomes of illness (Cochrane 1983). This is especially important when one is considering the lives of more vulnerable groups, such as mentally ill people (Zautra and Goodheart 1979).
11. Quality of life data is useful in planning the location and evaluation of community mental health services (Zautra and Goodheart 1979). Accessibility and acceptablity are key principles in the implementation of community care. Socio-demographic factors heavily influence these (Huxley et al. 1990).
12. 12 Empirical measures associated with theory. ‘The combination of data and conceptual framework can be used in making decisions about the delivery of mental health services’ (Bigelow et al. 1982:34), only if they are closely linked together. This is a scientific point with very important practical consequences for people who wish to see the techniques of social sciences being employed by direct service providers. Many writers have presented models of quality of life (e.g. Lehman et al. 1982; Baker and Intagliata 1982; Franklin et al. 1986) which might be employed to facilitate the making of these links.
13. Satisfaction and role performance are central. This point is really about accountability. The problems of defining models of life quality are perennial. Each of the main contributors to the debate has eventually got around to proposing some model of quality of life in mental health. Whatever models are proposed, no matter how complex their operation or broad or narrow their content, two features remain central. These are satisfaction and role performance. Satisfaction can be the opposite of dissatisfaction or the absence of distress or symptomatology; role performance is essentially about social adaptation and adjustment (Bigelow et al. 1982).

As practitioners as well as academics, we particularly endorse this last point. Whatever we, as professionals, may think that we are doing or may wish to do in community mental health programmes, we are certain that the public, including the patients and their families, expect us to be centrally concerned with fostering satisfaction and enhancing role performance. Consequently, come what may, our reality as social and health care professionals is to be held accountable in these areas and we believe that our evaluations should reflect this reality.

THE EVOLUTION OF THE CONCEPT OF QUALITY OF LIFE

According to Flanagan (1982), efforts to measure life quality began in the USA during the decade of the 1950s, with the Eisenhower Commission on National Goals, which noted a variety of social and environmental influences (President’s Commission on National Goals 1960:56). This was followed by a number of national government initiatives, which have since become part and parcel of the work of governments. The purpose of this research initiative was to ‘chart the social progress of the nation and to develop a regular system of social reporting’ to inform efforts to plan and evaluate social policy (Dann 1984:2–3). In 1960, the study by Gurin and colleagues ‘explored the psychologic disturbances, physical symptoms, professional help sought and the individual’s present happiness. This survey provided reports on sources of happiness and unhappiness, things causing worries and estimates of probable happiness in the future’ (Gurin et al. 1960:56).

However, concern about the nature of human welfare, happiness and quality of life are not new, though some of the terms themselves may be contemporary. Indeed, the ideas which underpin these are likely to be found in among the very essential notions of human community, family, social and economic life. Concern for the state of one’s self, family, friends, village, town, city and nation are inherent in one’s consciousness about human behaviour itself.

Considerations of what constitutes well-being have traditionally been more the province of philosophers and theologians than scientists. Systematic consideration of ‘happiness’ certainly existed among the classical Greek philosophers who have influenced Western thought. For example, in Ethics (see Ross 1947) Aristotle considered the nature of human conduct. He identified the desired (i.e. ethical) human behavioural goal as lying with mankind’s pursuit of good. This goal he identified as the condition of eudaemonia, literally ‘a favourable providence’, or well-being. Aristotle maintained that the most virtuous path along which human conduct could travel (i.e. our highest aspiration) was the individual’s pursuit of a well-being which resided in the achievement of physical and moral excellence—in his instance, through living a rational life. This is not dissimilar to a quest in order to realise one’s true potential (or a process of ‘self-actualisation’).

In contrast to this meaning, eudaemonia has been translated into the modern idiom as ‘happiness’ and understood, in the Epicurian sense, as a desired state to be achieved by an individual through obtaining excesses of pleasure over pain in one’s economic, social and psychological life. This latter, ‘hedonistic’, view of well-being has been integrated into Western thought by the utilitarian philosophers and writers, commencing with Bentham, Mill and Ricardo. Of course, Sigmund Freud’s influential early theoretical writings in psychology also postulate human motivation as being closely linked to this ‘pleasure principle’.

The point has been made that had the translation of eudaemonia concentrated on the pursuit of excellence or virtue rather than pleasure/happiness, the studies of psychological well-being of the past decades (and our subsequent review) would have been quite different and concentrated on the former rather than the latter (Waterman [1984] cited in Ryff 1989).
Rescher (1972) used the terms ‘hedonic’ and ‘aristic’ to describe this division of objectives. He equates ‘hedonic’ to well-being in terms of happiness or satisfaction (experienced subjectively) while ‘aristic’, derived from the Greek work aristos, which means the best, most noble or excellent, he equates to quality. In using these terms it is important to acknowledge that judgements made regarding the quality of the external, ‘public’, material world are capable of being shared with others who may agree or disagree. These may be more or less easily quantified with the reliability of such judgements compared against more ‘objective’ criteria. Those judgements made of the internal worlds of the human psyche are of a substantively different type, being, by nature, ‘private’ and subjective. Put another way, the ‘aristic’ is concerned with the welfare of the individual while the ‘hedonic’ is concerned with their personal well-being— welfare ‘refers to the needs of an individual within society’, while well-being refers to the personal experience of life (Osborne 1992:442). Consequently, according to Rescher, we are always the best judge of our own subjective satisfactions and feelings but we are not always the best judge of what may be in our best interest, our welfare, the objective dimensions of our lives.

EVOLUTION OF DIFFERENT WAYS TO MEASURE QUALITY OF LIFE

Having considered some of the roots of our concerns for ‘happiness’, we next consider the lineage of attempts to measure it. According to the psychologist Angus Campbell (1976), Western nations have been em-ploying statistics for centuries to ascertain both the levels of welfare of their citizenry and the means of meeting their needs. These statistics have related principally to the economic dimensions of life, including levels of income, expenditures and savings, the production and sales of goods and services and commercial activities. While Campbell suggests that the main reason for concentrating on economic measures is the ease with which information relating to these activities is gathered, others propose different reasons for their emergence.

Economic indicators

Hankiss (1983) maintains that the use of economic indicators originated with the concerns of early mercantilists, who assumed the existence of a direct relationship between various commercial activities, such as trade, employment and production, and the general ‘commonweal’ of a nation. According to this train of thought, well-being is governed by levels of economic activity and, hence, it is axiomatic that evidence of economic growth within a nation implies also growth in welfare or well-being for the nation. Though there has been substantial diversity of opinion among different schools of economic thought regarding the potential value, content and function of economic indicators, various measures have be...

Table of contents

• COVER PAGE
• TITLE PAGE
• COPYRIGHT PAGE
• ILLUSTRATIONS
• FOREWORD
• ACKNOWLEDGEMENTS
• INTRODUCTION
• PART I: CONCEPTS AND THEORY
• PART II: SERVICE APPLICATIONS
• PART III: ISSUES ARISING FROM APPLICATION IN SERVICE
• APPENDIX 1
• APPENDIX 2
• BIBLIOGRAPHY