QUALITY OF LIFE MEASURES IN HEALTH

QUALITY OF LIFE MEASURES IN HEALTH AND THEIR APPLICABILITY TO NON-WESTERN SITUATIONS                   KATELE KALUMBA               SENIOR FELLOW               DEPARTMENT OF COMMUNITY MEDICINE               UNIVERSITY OF ZAMBIA       PAPER ORIGINALLY PRESENTED TO THE MEETING ON QUALITY OF LIFE IN HEALTH CARE, DIVISION OF MENTAL HEALTH, WORLD HEALTH ORGANIZATION, 1991

QUALITY OF LIFE MEASURES IN HEALTH AND THEIR APPLICABILITY TO NON-WESTERN SITUATIONS

Katele Kalumba, Senior Fellow

Dept. of Community Medicine

University of Zambia, Lusaka.

1.INTRODUCTION:                                

A major health transition thesis has been promoted for sometime since the 1980s (Caldwell & Caldwell, 1989; Terris, 1983; Commission on Health Research for Development, 1990). It stipulates that differences in mortality rates among rich and poor countries are paralleled by differences in disease patterns. In the early stages of development, infectious and parasitic diseases coupled with malnutrition predominate, affecting especially infants and children. As income levels, environmental conditions and life styles change, problems of infectious diseases and malnutrition are contained, and non-infectious diseases such as malignant neo-plasms and diseases of the circulatory system emerge as principal causes of illness and death, affecting both children and adults more than ever before. The many chronic degenerative diseases of later life progressively limit mental function, physical mobility and vision.

A report of the Commission on Health Research For Development (CHRD,1990) drew attention to the fact that in developing countries, both stages of the health transition were occurring within very severely limited human and financial resources. High mortality of mothers and children from preventable infections  and malnutrition and from closely spaced pregnancies persists among the poor. For those who survive, there is the demand for health services to treat the chronic diseases. Above all developing countries face problems that have thus far received little attention. These include: tuberculosis, parasitic infestation, problems in women's health, injury, blindness, mental illness and other disabling illnesses. New problems such as AIDS and a fresh appreciation of emerging threats such as tobacco and illicit drugs, occupational hazards, and environmental contamination are excessively taxing the capacities of developing and developing countries.

These health trends must be seen within the context witnessed particularly since the decade of the 1980s. Ecological failures such as droughts that sometimes have given rise to food scarcities and other sanitation-related problems; increased use of all forms of technology, increased demands for human rights particularly with respect to women's health; re-privatization and/or decentralization of health care services and payments and the re-emergence of private clinics side by side with public health infrastructure; a growing number of urban and the rural poor as a consequence of the down-classing of the middle-class; dwindling real material investments by external Non-governmental and intergovernmental agencies, among other trends suggest     that a much more sophisticated understanding of quality of life issues as they apply to developing countries in Africa is needed.

The concept of transition also underlies Maurice King's argument that 'Health is a sustainable state' (King, 1990). King argues that part of the developing world is also going through a three-phase ecological and demographic transition. The first phase, according to King, involves expanding human demands within the carrying capacity of the ecosystem. In the second phase, demands exceed the sustainable yield of the ecosystem. While human demands expand, biological reserves are consumed ever more rapidly. In the third phase, human consumption is forcibly reduced as the ecosystem collapses. If we accept the premise that Zambia like many other African countries are faced with this demographic-ecosystem and epidemiologic transition of coping with communicable and non-communicable health problems, then we must begin to narrow the conceptual gap between Western and non-Western quality of life threats.

2. QUALITY OF LIFE ISSUES: CONCEPT AND ITS UNIVERSALITY?

A key defining concept of health in Alma Ata Declaration on Health For All (WHO, 1978) is "well-being". Closely related to well-being is the concept of "quality of life". Quality of life refers to a composite of measures of physical , mental and social well-being (Szalai & Andrews, 1981). Yet, attempts to operationalise this concept has to a large extent focused on physical indicators. In the Global Strategy for Health by the year 2000 (WHO, 1981), at least 13 indicators of 'quality of life' are suggested for European regional strategies. These are:

1. Proportion of persons disabled as a result of permanent impairment- in selected groups

2. Incidence of waterborne diseases

3. Percentage of population in households with an adequate water supply of safe water

4. Percentage of households with an adequate waste disposal system

5. Percentage of population exposed to given levels of selected pollutants

6. Percentage of children below a certain nutritional state- by age

7. Birthweight in selected groups

8. Absenteeism from work

9. Absenteeism from school

10.Criminality rates

11.Levels of education in various groups

12.Percentage of population satisfied with their own level of health

13.Percentage of people over 70 years with low dependency status 

Except for item number 12 in the list above, these social indicators are constructed as objective measures of social circumstances. Advocates would say they are adequate in helping us to map out variabilities within populations, to identify inequities, to anticipate public demand, and to predict trends. They are applied to the assessment of quality of life on the basis that as the level of education rises, the adequacy of medical care improves, the amount of substandard housing is reduced, and the purity of water and air is increased, quality of life will improve. This belief in objective measures circumvents one key observation that quality of life lies in the experience of life (Campbell, 1977). While these conditions might be assumed to influence life experiences, they do not assess that experience directly.

Advocates of psychological measures insist that there is a difference between the objective circumstances in which people live and their experience of these circumstances. Angus Campbell (1977) concluded after his American study that: "the major determinants of well-being are psychological rather than economic or demographic" (p334). In Campbell's (1977) study, at least three major dimensions of the "experience of well-being" were identified:

1. Satisfaction with ten domains of life (eg. work, marriage, housing, community, health, standard of living etc.) has an essentially cognitive quality.

2. Experiencing pleasantness of life is a measure of the affective quality of life (Life is interesting, enjoyable etc).

3. Absence of perceived stress is an affective-physiological quality.

Campbell stressed that

"people living in different life circumstances express different patterns of well-being and that these patterns reflect the peculiar quality of the situation they live in"(p334)

In a discussion of Campbell's work, Ansbacher (1977) suggested a recasting of the findings particularly on the use 'absence of perceived stress’ as a dimension of well-being. Following Hans Selye's (1956) dictum that stress is part of life... a natural by-product of all human activities, Ansbacher (1977:345) concluded that:

1. Satisfaction with life as a cognitive dimension of well-being, increases throughout the life circle and remains high even at the stages where "experience of pleasantness" --an affective dimension of well-being, declines.

2. "Perceived stress" is better understood as a concomitant of intensity of living ( vitality) than as a component of reduced well-being or unhappiness.

3. Persons who do not successfully meet or fulfill one of Alfred Alder's three life tasks, love and marriage ( others are work and friendship) are likely to be low in physiological well-being.

Two issues I would like to return to in the preceding discussion. The first is the role of stress and the second is the situational interpretation of experience. Ansbacher seems to suggest essentialism. The fact that stress occurs with the intensity of living does not make the experience of stress any more satisfying or pleasant. The occurrence of a common cold in every day life does not make it any more acceptable. The linkage between stress and other health problems particularly in the occupational literature has been strongly established (Coburn, 1981; Kalimo et al, 1987).

On the situational interpretation of experience, literature seems to suggest that we bear in mind that the same factor may be good for some and bad for others, good in some situations and bad in others. According to Levi (1987), cultural factors strongly condition attitudes towards specific situations such as work environment. But again how much do we know about the conditioning influence of culture in the face of rapid social change. The transition thesis seems to suggest that we do not overstretch the etic-emic distinction in matters of health. The question is: can we identify cognitively and affectively universal intrepretive structures of experience?

Recent studies and documentation based on evaluations of the living conditions in low-income settlements (Carballo and Martin-Lira, 1984; Rossi-Espagnet, 1986; WHO, 1986) suggest that social and cultural disintegration and impoverishment, whether in urban or in rural settings, violates adult mental health. According to these studies, at least three major pathological consequences of low-income settlements characteristic of rapid urbanization in Africa and other third World countries support the transition thesis. First, there is the continuation of diseases of poverty such as gastro-intestinal infections.  Second is the emergence of chronic degenerative diseases associated with poor living and working conditions. Lastly, there are conditions associated with the stress precipitated by social isolation, insecurity, dissolution of primary relation of family and cultural conflicts (cf. Ekblad, 1990). Does this transition suggest a convergence in the perception and experience of stressors which would suggest that certain objective events have tendentially, similar significations for health cross-culturally?

Berry's work (1974) hypothesized  a crucial link between the ecological demands on a cultural group and the socialization practices of that group. In turn, these demands and practices shape the characteristic manner in which the group perceives and interprets events and phenomena occurring in their everyday lives. The concepts of field-dependence and field-independence follow from this work and refer to varying degrees of perceptual discrimination. For Berry, variations in perceptual interpretations are inextricably linked to the complex interaction of ecological and societal factors that determine the cognitive development of a subject within some culture.

Berry's work would lead us to reject any cultural convergence thesis. But a critique of this work on field-independence/dependence has been that it is essentially centri-cultural acquiring "unattractively ethnocentric overtones" (Serpell, 1977; Ciborowski, 1979). One question we need to ponder along this line is that: is there a point beyond which an event, such as the fact of crowding, would signify a stressor for a Chinese just as it would for an American or African child? Christopher Alexander (1974) argued that certain built environments such as urbanism generate overtime, universally valid psychological experiences like the phenomenon he called autonomy-withdrawal syndrome which greatly threaten the social human nature. The differences that may be observed from one urban context to another in this case, becomes simply a question of degree.

That there may be universal perceptual signification in health is suggested in one study in which Zambia participated. Between 1981-2, an international collaborative study, "Recording Health Problems Triaxially"  under the auspices of the WHO Mental Health Division, developed an instrument which allowed for the recording of social and psychological problems alongside with physical ones. These problems were presented in the form of 50 international case vignettes from Africa, Asia and the Americas which had been selected from 340 collected. These were then presented to primary health care workers in seven countries for rating. What came out of that study is the high degree of inter-rater reliability on psychological (0.73), social (0.75), and physical (0.78) scales. While these high correlations would be said to overshadow a wide range of reliability across specific categories of measurement, individuals, workers and countries, the overall correlations suggest, even if partially, the limits of cultural mediation in  certain interpretive schemes of health workers (WHO, 1983;  Freund and Kalumba, 1982) .

QUALITY OF LIFE CONCEPTS: AN EXAMPLE OF APPLICATION TO ZAMBIA

One area in which quality of life concepts have been suggested for application is in the management of disabilities. In the management of childhood disabilities, the concept of eco-culture  seems to have emerged. The application of this concept entails an appraisal of the child's behavioral repertoire as it evolves within its cultural and physical milieu. A child's 'developmental niche' consists  of various "interlocking  and embedded  systems: care-giver-child microsystems, family and friendship networks, instructional programmes, career paths etc" (Serpell and Nabuzoka, 1989; cf Heron and Myers, 1983; Super & Harkness, 1986).

Community-based rehabilitation  (CBR), formed a major thrust of the application of the eco-culture concept to the enhancement of the quality of life of disabled children. Serpell and Nabuzoka (1989) have reported the application of the assessment technology and intervention of CBR in Zambia. A Home Environment Potential Assessment schedule (HEPA) was applied in an evaluation of the impact of CBR. This study revealed the high  reliability and validity of locally developed schemes for assessment of the  current level of functioning of Zambian children with intellectual disability and of selected features of the child's regular affective environment. The authors report that:

Factor analysis of the scores on relatively reliable items within [HEPA] scales, by rural and peri-urban samples in three ecologically and culturally contrastive regions of Zambia, generated two recurrent factors across age groups (0-2, 2-6, and 7-12 years). One factor, loading heavily on the scales of Emotional Support, Individualising and Responsibility Training was tentatively identified as representing an underlying dimension of active 'Promotion' of the child's personality. The other which loaded heavily on the scales of Physical Support and Framing, was interpreted as reflecting a dimension of family 'Stability' (Serpell & Nabuzoka, 1989:3-4).

The compendium of assessment batteries developed after the initial national campaign to reach the disabled child, followed from empirical observation of health worker assessment performance. While most health workers were astute at assessing physical disabilities over the age of 5 years, they had great difficulties in grasping problems of hearing, speech and intellectual functioning. One key lesson of this exercise is that it is wholly feasible with effective training of health workers and the development of appropriate assessment instruments to apply a fairly complicated scheme of quality of life intervention in Zambia. Serpell's (1983, 1986, 1988) argument in this respect would be that the limits of quality of life measures would be internal to their centri-cultural design  than to their strictly scientific applicability. Scientific applicability calls for eco-cultural adaptation. The question here is not 'either-or' but : to what extent can quality of life measures developed in one culture be modified to respond to the specificities of a given eco-culture?

THE NEED FOR MORE INNOVATION IN HEALTH: A FINAL NOTE

The need to explore new ways in which the concept of well-being is to be advanced in countries such as Zambia is driven by very objective factors. In this section, I want to argue that these factors make imperative certain and wholly acceptable silences on arguments about cultural fragility. Great cultural upheavals are taking place whose consequences can not readily be predicted.

Three  major trends appear to pose serious challenges to health and the to the quality of life in Zambia in general.  The first major trend affecting quality of life  is clearly the economic process of structural adjustment which has introduced stiff economic policy measures. These include the decontrol of prices , devaluation of the national currency, removal of food subsidies, and cost recovery in social services such as health. These and other fiscal policy measures have unpredictable effects on prices and income, money supply and inflation, Zambia's balance of payments, and employment. Above all, they have potentially far‑reaching consequences for the continued provision of curative and preventive health services and on the nutritional status of children and women.

The growing demand for increased public revenue and reduced economic distortions through a greater reliance on user charges for public services  and restructured general tax systems presuppose public institutional/managerial  capacities for the definition of clear   priorities and concentration on quality for efficient and effective public spending. Such adjustments entail policy changes in the health sector whose impact would raise issues of social entitlement (as rights), political relations, population effects etc. Zambia has already experienced political upheavals with very momentous consequences for the political system arising out of popular disenchantment with deteriorating conditions of living.

The second major trend is demographic. The past two decades have shown a rising population growth rate currently estimated at 3.2 per cent per annum. A high fertility rate of 220 per 1000 women aged 14‑49 accounts for much of the population growth pressures as are more enabling factors such as culture.  Current figures suggest that 20 per cent of the population is under five years. The social service needs of such a large number of children are immense and likely to increase in the 1990s.

The third trend is the emergency of new viral and aggressive parasitic infections such as HIV/AIDS and chloroquine resistant malaria and tuberculosis. These epidemiological trends pose new threats to public health and to child care in particular. One emerging consequence of HIV/AIDS specifically, is the inevitable increase in orphaned children. The decade's new "Children in Distress" , will themselves either be victims of the HIV virus or of the effects of loss of parental care, including malnutrition and psychological trauma.

The rise of AIDS has  also compounded the crisis of restorative medicine. At personnel level these epidemiological trends signal health worker stress or "burnout" in the face of increasing mortality. The current medical profession's attempts at developing guidelines and policies to deal with AIDs is challenged by the dearth of systematic research on the effect of the disease on physicians' attitudes and practices.  These issues deserve sustained attention at the level of policy and research.  The critical question is to what extent are conventional forms of health care adequate to meet what is emerging as a complex demand structure of physical, social and psychological problems in the population?

If the ultimate goal of our health system remains that of creating a healthy future for ourselves and our children, then active efforts at imaging desirable trends to improve the quality of life of people in Zambia and other developing countries, ought to be explored.

As in all areas of human intervention, there are bound to be serious obstacles in exploring any new strategy for a healthy future. The first is the lack of public/community understanding about health, illness and human potential. There are still deeply rooted beliefs in Zambian society which functions to support the view that health and illness are not subject to individual control. Beliefs in witchcraft cut across various segments of society.

Secondly, there is the dependence upon a mechanistic paradigm and mythology of medicine that gives undue emphasis to the role of medical professionals to exclusion of other disciplines. Hence, there will be need to increase awareness of the impact of personal behavior (lifestyle) on health and well-being; provision of more public health-relevant information leading to greater awareness; and application of quality of working and social life concepts in social and economic policy interventions.

Dogmatic/traditional thinking and expectations about the health care system as well as lack of cooperation, collaboration, communication and inappropriate competition between health care providers within the modern health system as well as between traditional and modern systems are obstacles likely to hinder health improvements. There are in contrast, many positive impacts of technology on communications, diagnosis and treatment; recognition of the differential roles of social categories such as women and children in health promotion in addition to greater consumer power in health services which are trends likely to facilitate the process of attaining improvements in thinking about the nature and realization of well-being.

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