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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