cultural influences on perceived quality of life

Cultural Influences on Perceived Quality of Life

Patricia A. Marshall

S CIENTIFIC AND technological advances in medical care make possible the prolongation

of life for a growing number of patients. The ef- ficacy of life-sustaining therapies in thwarting the inevitability of death is unquestionable. However, the goal of survival is only one dimension of patient care. Health professionals and consumers alike are increasingly concerned about the quality of life in the context of experiencing and adjusting to chronic or acute illness.

In the last decade, quality of life has become a factor in medical decision-making, ‘J and the concept has been used in studies examining psychosocial factors, life satisfaction, and physical impairment in diverse patient populations. 3-7 Quality of life may refer to broad social indicators such as income, housing, and education; it also refers to an individual’s experience of emotional and physical well-being. Numerous instruments have been designed to measure both the subjective and objective dimensions of quality of life.8,9 Investigators use various definitions of what constitutes quality of life, and there is considerable diversity in their methodological approaches to the problem. lo-i3

Although the literature on quality of life and its relationship to health and illness is increasing, there have been few systematic attempts to exam- ine cross-cultural aspects of the concept. 14-i7 This article briefly explores cultural influences on perceived quality of life with special attention to the cultural construction of individual well-being. Problems in the cross-cultural use of quality of life instruments in health research are addressed, and suggestions for the development of culturally sensitive methods to assess quality of life are outlined.

From the Medical Humanities Program, Loyola University Snitch School of Medicine, Maywood, IL.

Patricia A. Marshall, PhD: Assistant Director, Medical Hu- manities Program.

Address reprint requests to Patricia A. Marshall, PhD, Med- ical Humanities Program, Loyola University &itch School of Medicine, 2160 S First Ave, Maywood, IL 60153.

0 1990 by W.B. Saunders Company. 0749-2081/90/06@#-0006$0.500/0

CULTURE, ETHNICITY, AND ACCULTURATION DEFINED

Culture refers to learned patterns of behavior, beliefs, and values shared by individuals in a particular social group; it implies a set of assumptions about the nature of the social and physical envi- ronment and one’s place within it. Perhaps the most important aspect of culture is that it provides human beings with a framework for understanding experience. Culture acts as an interpretive guide for the symbolic significance individuals attach to human behavior, human interactions, and the ma- terial products of human life. Geertz’* defines culture as, “an historically transmitted pattern of meanings embodied in symbols, a system of inher- ited conceptions expressed in symbolic form by means of which men communicate, perpetuate, and develop their knowledge about and attitudes towards life.”

Ethnicity is characterized by an individual’s identification as a member of a social group with a common racial, national, tribal, religious, or linguistic background. The majority of nation states throughout the world are composed of diverse ethnic groups. Thus, it is possible to speak in broad terms about American culture or the American worldview, but most Americans will identify themselves as members of a particular ethnic group. To identify oneself as African American suggests a life experience quite different from that implied by an ethnic identification of, for example, Vietnamese, Italian, Polish, or Mexican.

Acculturation or enculturation is the process through which one learns to be a member of a specific culture or ethnic group. This socialization process occurs within the context of family and community relationships and ensures that children will become skilled manipulators of their social, emotional, and physical environments. Accultura- tion may also refer to the process through which one ethnic group assimilates and adapts to another ethnic group or another culture. For example, a recent emmigrant from Mexico to the US will experience an adjusted diet, a new language, and

278 Seminars in Oncology Nursing, Vol 6, No 4 (November), 1990: pp 276-264

CULTURAL INFLUENCES AND QUALITY OF LIFE

new social customs, and, in time, may adopt some of the values of the dominant culture. Accultura- tion may be assessed by examining the extent to which one ethnic group conforms to the language and customs of another ethnicity. The key element in acculturation is the degree to which underlying values are incorporated into individual life styles and attitudes.

Many individuals are bilingual or multilingual, but a fluent grasp of language does not in itself indicate acculturation within a society or ethnic group. Some individuals are bicultural, implying an ability to understand and to function within the cultural constraints of two particular ethnic groups, These individuals are able to master the social nuances suggested by the process of acculturation, and they are more likely to accommodate their behavior to the cultural expectations of particular set- tings and relationships.

CULTURE, ILLNESS, AND QUALITY OF LIFE

Cultural and ethnic background influence every aspect of the experience of both health and illness, including the meaning attached to physical symptoms, 19-23 responses to pain,24325 and the identification and selection of medical care.26327 The cultural construction of AIDS in Botswana28 highlights the importance of underlying explana- tions of disease and therapeutic remedies thought to be efficacious. Boswagadi is one manifestation of m&la, a disease that is believed by natives of Botswana to result from the violation of sexual taboos. Symptoms include aching legs and general bodily pain, urinary incontinence, diarrhea, and stomach pains. Some traditional healers believe that AIDS is boswagudi. Although certain healers are cynical about their power to cure those afflicted with the disease, others are more optimistic. One healer said, “Of course I can cure it. I use herbs to boil with water and give (it to) the patient to drink or inhale. ’ ’ *’

Assessments of quality of life, including the ef- fect of illness, must be understood within the cultural boundaries that maintain and reinforce life experience. Cultural beliefs as well as personal experience directly influence appraisal of symptoms and stimuli and determine not only which conditions are perceived as threatening and socially or physically constraining, but also the manner in which they are discussed. In interviews with in-

dividuals suffering from chronic neurasthenia in the People’s Republic of China, Kleinman and Kleinman found that although many patients were clinically depressed and had other psychiatric disorders, their primary complaints were somatic, not psychosocial. One patient with the classic symptoms of Major Depressive Disorder believed he had a serious heart condition although he was repeatedly reassured that his heart was normal and that his physical symptoms were associated with anxiety.

The patients’ preference to discuss physical rather than psychological distress is indicative of the way in which symptom-reporting is culturally sanctioned. Thus, it was culturally appropriate for the patients with chronic neurasthenia to talk about headaches, dizziness, weakness, and a lack of en- ergy; it was not culturally sanctioned to discuss problems in personal relationships or concerns about work or finances. This type of cultural patterning in relation to idioms for psychological distress has been observed in other societies, including that of the US.

Perceptions of quality of life are embedded in cultural beliefs about what constitutes normality and health. Value structures play a crucial role in the cultural patterning of illness30*3’ and in the cultural expression of personal well-being. Body image and physical appearance, for example, are often viewed as concrete manifestations of health and wellness. However, the value attached to specific body types vary considerably across cultures. 32 Although obesity is socially stigmatized in the US ,33 in many countries fatness is associated with health and prosperity. The symbolic meaning attached to physical appearance has important clinical implications, especially for compliance with medical treatment. Lock34 cites the case of a 20- month-old obese child of a first generation Greek mother who refused to return to a clinic after being encouraged by the pediatrician to change the baby’s diet to reduce her weight. The experience of well-being and a “good” quality of life was, in part, manifested to the mother by the baby’s robust appearance. The doctor’s definition of obesity and its implications for a reduced quality of life for the child are indicative of a very different cultural norm.

The nature and extent of family relationships have particular significance for perceived quality

PATRICIA A. MARSHALL

of life and life satisfaction generally and, more specifically, for the interpretation of physical mal- aise, subsequent treatment, and coping strategies throughout an illness episode. Spinetta35 noted strong differences in family functioning in response to cancer among Mexicans and recent Viet- namese immigrants receiving treatment at a clinic in San Diego, CA. Mexican mothers were found to rely on one another rather than on their husbands for support in dealing with childhood cancer, and direct communication with children about their illness was viewed as inappropriate. Different issues arose with the Vietnamese families, who often depend on a tribal spokesman in negotiations with members outside their community. Clinicians found that it was important to communicate, at least initially, with the tribal leader in discussing treatment concerns. This tradition is foreign to the style of direct communication between clinicians and American families.

CROSS-CULTURAL USE OF QUALITY OF LIFE INSTRUMENTS

A considerable degree of caution is warranted in cross-cultural examinations of issues surrounding perceived quality of life, especially in the implementation of standardized measurements. Klein- man36 suggests that quality of life in the context of health and sickness is directly associated with individual meanings attached to the experience of illness: “Illness refers to the perception of symptoms, the experience of disability, the acts of la- beling and communicating distress, and the coping processes drawn on by patients and families to control, order, make sense of, and live with disorder. ” Kleiurnan is critical of attempts to eval- uate quality of life that do not account for the personal significance of illness and the manner in which it is embedded and expressed in cultural norms and social relationships.

Certain investigators question whether it is ac- tually possible to quantify the diffuse experience of quality. For example, Bergsma and Enge13’ define the concept of quality of life on four levels: macro, meso, personal, and physical. The macro and meso levels broadly refer to societal and institu- tional factors that influence quality of life, while the personal level is represented by individuals’ frames of reference for health and illness. Bergsma and Engel suggest that measurements confined to the level of physical activity are inadequate and

argue that objective measures at all levels are needed.

Patrick et a138 note that the value orientation and cultural content of standardized measures for assessing health status are expressed in several ways including: “(1) the conceptualization of health on which the measure is based; (2) tbe different dimensions of health described by the measure; (3) the division of each dimension into discrete statements denoting level or degree of health; and (4) the relative weighting of each statement or level within and across different categories of health states.” Translation of questionnaires into different languages adds yet another dimension to the problem of cross-cultural application. Literal translations do not necessarily address underlying semantic structures, idiomatic expressions, and cultural interpretations of response categories. 39

Cultural relativity in the translation of questionnaire items relating to quality of life is an important factor to consider in research design. Results of cross-cultural studies using standardized health measurements cannot be understood apart from their so&cultural context. The adaptation of the Ferrans and Powers Quality of Life Index (QLI) for a non-western setting exemplifies both the problems and the potential for constructing a culturally sensitive and culturally appropriate standardized instrument. 4o

The Femurs and Powers QLI was designed to measure quality of life for people in good health and for those experiencing illness.i2 The instrument contains 35 items and explores 18 dimensions of life goals, stress, physical health, and life satisfaction. An important aspect of this instrument is that it measures both the degree of satisfaction with the specific life domain (eg, How satisfied are you with your family’s health?) and the relative importance of the domain for the individual (eg, How important is your family’s health to you?).

The Ferrans and Powers QLI was translated into Chinese and given in Taiwan to a convenience sample of 135 men and women in a study of urban adult children caring for older parents.40 The Tai- wanese version of the Femurs and Powers QLI was developed using a method of back-translation. Back-translation is a process whereby questions are first translated from one language to another and then translated back again into the original language by independent translators. This process insures an accurate translation of the questionnaire

CULTURAL INFLUENCES AND QUALITY OF LIFE 281

items. Ideally, the new instrument should be compared with instruments previously validated for the culture being studied.

In adapting the Ferrans and Powers QLI, the questions were first translated from English to Chi- nese and then back again to English by independent translators. Several items were changed to conform to cultural mores concerning particular behavioral domains. For example, the question, “How satisfied are you with your sex life?,” be- came “How satisfied are you with your intimacy with your spouse?” Results of analyses supported the reliability and validity of the instrument, ex- cept in the domain of the family. Since the ex- tended family plays an important social role in Tai- wanese culture, additional questions were created for the Quality of Life Index subscale in order to measure family variables. The investigators are currently in the process of retesting the instrument for internal consistency and reliability. This study calls attention to the need for measurements that are sensitive to cultural variation in family compo- sition and its influence on family functioning and individual well-being.

The Sickness Impact Profile (SIP) is often used in addition to other measures of quality of life in studies assessing physical impairment and the ef- fect of illness on social and emotional functioning. The SIP is a standardized instrument composed of 136 yes/no statements. It examines physical, social, and psychological dysfunction as a result of sickness.41’42 This instrument has been used in cross-cultural studies of illness.43,44

In an attempt to determine whether or not the values attached to health states are similar among English-speaking cultures, Patrick et a13* asked health professionals and consumers in Seattle, WA, and London, UK, to rate the severity of dysfunction described in the items contained on the SIP. Results show that judges in the two countries gave similar ratings to most items. However, agreement was higher on items rated as more dys- functional than on items rated as less dysfunc- tional. The investigators point out that, while En- glish-speaking societies may generally agree upon the relative values assigned to health states, the meaning of the concept of dysfunction and its sa- lience for specific dimensions of health may vary considerably. For example, when considering the impact of sickness on behavioral functioning, most people would prefer mobility to confinement in a

hospital bed or an unrestricted diet compared with one that restricted fat and sodium intake. However, the meaning of behavior and its implications for quality of life may differ across social and cultural groups despite the use of a common language.31

The SIP was also used in a cross-cultural investigation of low-back pain among Spanish- and En- glish-speaking patients attending a walk-in clinic in San Antonio, TX.44 A Spanish translation of the SIP was developed using the procedure of back- translation. A bilingual interviewer gave the Span- ish and English versions of the SIP to 120 adults. The sample included non-Hispanic patients, Mex- ican Americans who used an English version of the SIP, and Mexican Americans who used the Span- ish SIP. The reliability and clinical validity of the responses of these groups were compared, and internal consistency was found to be excellent. How- ever, important differences emerged when construct validity was examined by correlating SIP scores with several measures of disease severity. While non-Hispanic responses appeared to be valid, the responses of Mexican Americans using the Spanish version of the SIP did not. The validity coefficients for the responses of the Mexican Americans using the English SIP were intermedi- ate between the other two groups.

The investigators suggest that levels of Western acculturation, including educational background and familiarity with questionnaire research, could account for the differences in observed validity. In other words, the instrument, originally constructed in English for a North American culture, was most successful with English-speaking individuals so- cialized into the normative behavior and normative expectations of North American society. The individuals for whom construct validity was the strongest spoke English fluently, and it was also their native language. Moreover, they were more likely to be educated in North American schools and to be accustomed to the questionnaire style of survey research. The results of this study point to the difficulties involved in the translation and implementation of instruments cross-culturally. Ac- curate measurements of the variables investigated and effective interpretation of results depend upon the respondents’ ability to understand the language and the method of investigation.

Application of other instruments measuring different dimensions of quality of life have been used with varying degrees of success in cross-cultural

282 PATRICIA A. MARSHALL

research.45-47 For example, a Chinese version of the Purpose in Life Questionnaire was given to more than 2,000 Chinese secondary school stu- dents and was found to have high internal consistency as a scale.45 Investigators exploring the emotional well-being of elderly American Indians used the Life Satisfaction Index Z-scale, the Oars Mul- tidimensional Functional Assessment Question- naire, and a semistructured interview schedule and found that subjective measures of life satisfaction were more predictive of mental health than were the objective measures.47 Table 1 presents a list of cross-cultural studies in which standardized instruments have been used to document various aspects of perceived quality of life.

structured survey approach. In a review of health interview surveys in developing countries, Kroeger49 argues that the anonymity of survey research and the idea of answering questions by choosing from arbitrary categories is foreign to many people of the world, especially those in less developed countries. He suggests that the limita- tions of this method of questioning may be over- come by using an interview style that conforms to the mode of everyday communication.

METHODOLOGICAL ISSUES INFLUENCED BY CULTURE

Social, cultural, and linguistic differences between the interviewer and respondents can bias results in studies of quality of life and health status. For example, investigators using the Hispanic Health and Nutrition Examination Survey with Mexican Americans, Puerto Ricans, and Cuban Americans found significant intragroup differences that were strongly influenced by the language in which the person was interviewed.48 Clinicians working with Mexican patients attending oncology clinics found that poorer and less educated families were uncomfortable talking freely with a bicultural, bilingual psychologist; they were more self- disclosing with an older Mexican woman who had lost a child to cancer.35

In cross-cultural investigations of quality of life, it is imperative to collect data regarding indigenous beliefs and meanings attached to the variables under consideration. For example, in addition to ask- ing about satisfaction with recreational activities or family relations, one must also determine what constitutes social interactions or activities, what is important about them to the individual, and under what conditions they become salient. Data based on semi-structured interviews, open-ended questionnaires, and direct observation of behavior and affect greatly enhance survey findings. When these methods are an u&fordable luxury given the ex- igencies of research, every attempt should be made to document underlying sociocultural determinants in the experience and expression of quality of life.

The use of a standardized self-report instrument assumes literacy among the study population. In addition, an instrument with closed questions and fixed alternatives, even when it has undergone a sensitive and meaningful translation and is admin- istered by an interviewer, may be difficult to comprehend for individuals unfamiliar with the

The development of culturally sensitive research instruments depends upon a sound knowledge of the language of the study population. When translations of English forms to other languages are required, Tripp-Roemer” recommends following the suggestions of Brislin, Lonner, and Thomdike.‘l Sentences should be simple and short and written at an easy level of understanding; met- aphors and idiomatic expressions should be avoided; nouns should be repeated rather than using pronouns; specific rather than general terms open to broad interpretation should be used. These are good rules to follow in questionnaire construction regardless of the cultural background of the

Table 1. Examples of Cross-Cultural Studies Using Standardized Instruments to Measun, Dimensions of Ouallty of Life

Instrument

Ferrans and Powers QLI SIP SIP Life Satisfaction Index Life Satisfaction Index Purpose in Life Questionnaire Modified Purpose in Life Questionnaire Qualitative semistructured interviews,

Karnofsky scale, Glasgow Outcome scale Qualitative in-depth interviews

Sample

Taiwanese American/English Anglo/Mexican American American Indian Anglo/Mexican American Chinese AmericanlTaiwanese Finnish

Dutch

Study

Ferrar# Patrick et aI= Deyo* Johnson et al4’ Cleeland et aIt6 Shep Chang4a Koivukangas and Koivukangass*

Tymstra et aiw

CULTURAL INFLUENCES AND QUALITY OF LIFE 283

individuals being studied, but they become crucial in the implementation of a cross-cultural study.

SUMMARY

Cross-cultural investigations of quality of life will provide a more well-rounded picture of the multidimensional aspects of life satisfaction and personal well-being. Careful attention must be given to the nuances of language and sociocultural context in the translation of questionnaires and the

implementation of cross-national research. Future explorations of the concept of quality of life should incorporate qualitative and ethnographic data to in- sure an adequate representation of the social and emotional context surrounding perceptions of well- being and life satisfaction. A meaning-centered approach to the examination of quality of life will facilitate understanding of the nature of wellness and the impact of illness on individuals and families of every cultural background.

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