Elderly people's definitions of quality of life

Elderly people's definitions of quality of life

~ Pergamon Soc. Sci. Med. Vol. 41, No. 10, pp. 1439-1446, 1995 0277-9536(95)00117-4 Copyright © 1995 Elsevier Science Ltd Printed in Great Britain...

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Pergamon

Soc. Sci. Med. Vol. 41, No. 10, pp. 1439-1446, 1995

0277-9536(95)00117-4

Copyright © 1995 Elsevier Science Ltd Printed in Great Britain. All rights reserved 0277-9536/95 $9.50 + 0.00

ELDERLY PEOPLE'S DEFINITIONS OF QUALITY OF LIFE MORAG FARQUHAR The Medical College of St Bartholomew's Hospital, University of London, London, England Abstract--The subject of this paper is the definition and measurement of the concept of quality of life, and questions the operationalization of quality of life simply in terms of health status measures and scales of functional ability. It is based on a review of the literature, and the initial analyses of the first stage of a study designed to identify individual's views of the quality of their lives and to test the relevance of various scales used to measure quality of life. The study focuses on older people living at home in two contrasting areas of south east England, and demonstrates not only that older people can talk about, and do think about, quality of life, but also highlights how quality of life varies for different age groups of the elderly population living at home, in different geographical areas. In addition, early conclusions also indicate that there is more to quality of life than health: indeed, social contacts appear to be as valued components of a good quality of life as health status. This study deals with issues high on the agenda of the current debate on quality of life and its measurement; it has implications for those involved in both quality of life research and in health and social service policy for older people.

Key words~uality of life, elderly, measurement

INTRODUCTION

The term 'quality of life' is in vogue; it has become popularized, even cliched. In recent years the term has appeared in a range of media from television and magazine advertisements to political speeches and newspaper headlines: the increasing appearance of the term 'quality of life' in these formats says something about its importance to us as a concept, or even an ideal. However, the term quality of life is not only used in everyday speech, but also in the context of research it is linked to various specialized areas such as sociology, psychology, medical and nursing science, economics, philosophy, history and geography. As a term in multidisciplinary usage it begs the question 'where has it come from'? Hanestad [1] believes that the term quality of life has gained currency partly because of its positive connotations, stating that "most people will agree that quality of life is an aim for both the individual and for groups of individuals". However this assumes that the term 'quality of life', or even the concept of 'quality', refers only to a positive state, rather than simply 'a state'. When we talk of someone's quality of life we are not simply talking about the good things in their lives, but the bad things too; descriptions centre on the nature of peoples' lives, and the ability to maintain or even improve the quality of their lives.

THE RISE OF 'QUALITY OF LIFE'

After the end of World War II, the term 'quality of life' became commonly used. For example, in American vocabulary, the term was initially used in reference to material g o o d s - - a house, a car, more

and better appliances, and the money to travel and retire [2]. Following this the use of the term gradually broadened, for example 'quality of life' was included in the report of President Eisenhower's Commission on National Goals in 1960, which referred to education, concern for the individual, economic growth, health and welfare, and the defence of the non-communist world. Then, following major political and social upheavals starting in the late 1960s, emphasis switched towards personal freedom, leisure, emotion, enjoyment, simplicity and personal caring. The term then served to indicate that the 'good life' represented more than simple material affluence [3, 4]. During the post-war years of rapid economic growth and social change there were concerted efforts to measure quality of life for the purposes of social research in both America and Europe. Objective social indicators were those measurable social statistics such as divorce or delinquency rates, or possession of consumer goods such as the n u m b e r of households with telephones or two cars, or perhaps as has been suggested elsewhere, the number of cars you have with two telephones [5]. In other words, measures which could be taken to show changes in the societal quality of life. Problems with these measures lead to the birth of the subjective social indicators movement. It was argued that because people's subjective responses are real and people act on the basis of them [6], one should take account of these subjective responses when assessing quality of life. To set this in the context of health care, the increasing use of the term quality of life in social research was followed by an increase in the use of the term in trials of clinical interventions from the

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mid-1970s; in particular in the fields of oncology, rheumatology and psychiatry. This has been described by Ebbs et al. [5] as the medical profession beginning to realise its responsibility for the welfare of the 'whole patient'. In medicine and nursing science, quality of life offset survival as an aim as awareness that a long life is not necessarily a good life increased. Since this time, a profusion of published papers have dealt with the term quality of life, but in a heterogeneous manner making comparison difficult [5]. Indeed, where many papers refer to 'quality of life' in medical and nursing journals, what they are in fact referring to is 'health-related-quality-of-life', and not 'quality of life' itself [7] i.e. they are measuring just one domain of quality of life--usually physical functioning. DEFINING 'QUALITY OF LIFE'

Definitions of quality of life are as numerous and inconsistent as the methods of assessing it. It is a problematic concept as different people value different things. Closer inspection of medical and nursing papers that mention 'quality of life' in their titles often reveals professionals' limited perceptions of the concept. Many studies have either avoided defining what they purport to measure or have limited their definitions to what the investigators have seen as large components of the whole concept [5, 7]. This review focuses on the literature of social gerontology and social indicators research, and, is not comprehensive. In social gerontology and social indicators research, one commonly cited definition of quality of life is that by George and Bearon [8] which describes four underlying dimensions to the concept, two of which are objective and two of which reflect the personal judgement of the individual: general health and functional status; socioeconomic status; life satisfaction; and self esteem. They do not claim that these four dimensions fully assess quality of life, they are but four central dimensions out of a potentially infinite number of aspects of quality of life [8]. In addition Abrams [6] has defined the expression quality of life as the degree of satisfaction or dissatisfaction felt by people with various aspects of their lives, and Andrews [9] related it to the extent to which pleasure and satisfaction characterize human existence. In health services research, general health (both physical and psychological well being) and functional status are judged to be important dimensions of quality of life, particularly salient to the older people, with their higher rates of chronic illness [10]. As a result, much of the conceptual framework for quality of life measurement in health services research is derived from the World Health Organization's definition of health as a state of complete physical, mental and social wellbeing [11], with the emphasis on physical health and functional ability. However,

health is not the only dimension of quality of life. An understanding of the conceptual distinction between health status and quality of life and, for example, the distinction between life satisfaction and quality of life, is therefore vital when deciding how to measure quality of life validly. Some work has been carried out to begin identifying lay definitions of quality of life. For example, Hall [12] asked subjects what they thought of when they heard the words 'quality of life'. The largest single category referred to was the family, home life and marriage. A large number of respondents were unable to be specific and referred to being happy, contented or 'being satisfied inside yourself'. Health ranked quite highly and the longer the interval since the last visit to the doctor, the higher the rate of satisfaction with life. Factors which received least mention were 'pressures of life', consumer goods, equality and justice. Another example, a survey published by Age Concern [13] of the views of people of pensionable age living in private households, reported that health proved to be a vital part of quality of life; decline in health was associated with a decline in other activities, loneliness and a greater reliance on others. MEASURING QUALITY OF LIFE

Both objective and subjective indicators are used as measures of quality of life. Objective measures have the advantage that they are not subject to observer error bias, but they are insensitive to the feelings of the subject [14] and concern been expressed regarding the reliability of some measures; for example, crime rates, housing density and income [15]. Subjective parameters, such as job satisfaction, and perceptions of health and morale, involve subjects being asked to make judgements about their lives; this is a strength of subjective measures. As Abrams [16] has stated--"people's perceptions, however uninformed they may be, are real and people act on the basis of them". A large number of scales and tests have been devised to measure quality of life. They vary widely in concept, construction and content, and therefore cannot always be compared directly with each other. Not surprisingly then there is little agreement on what constitutes a quality of life measure; no indicator can ever be comprehensive enough for all uses. The validity of a quality of life measure is therefore difficult to establish--with what standard does one make comparisons with? However the same could be said when designing a quality of life measure---on whose standards should it be based? To date, the majority of scales have been developed by professionals, based on their definitions and standards of what gives a life quality. However, feelings about one's life are intrinsic, subjective matters. If people are asked about these feelings, most of them can and will talk about them; on the other hand a few may lie

Elderly people's definitions of quality of life outright, others may colour their answers to some degree, and probably most of them will be influenced to some extent by the framework in which the questions are put and the format in which the answers are expected to be given [17]. Because of these inherent problems in using measurement tools, indepth unstructured interview techniques have an important role to play in achieving a better understanding of quality of life. However, much criticism is directed to the validity of data gathered by this method. The critics maintain that it is not possible to achieve a good measure of how people evaluate their own lives. For example, they believe that most people have not given enough consideration to their conception of satisfaction and quality of life, or their feelings around these two subjects. However, Andrews [9] has gone some way towards disproving this--on asking respondents about quality of life he found that less than 1% chose the reply-type 'never thought about it'. Who else than the individual himself/herself is in a position to express his/her own experiences? As Hanestad [1] has written, "one must either say that the acquisition of this type of knowledge is impossible in principle or it must be accepted that the person wearing the shoe is the one who knows where it pinches and try, as far as possible, to correct sources of error". For example, having compared the correlation between scores obtained by professionals and patients themselves, Slevin et al. [18] concluded that if a reliable and consistent method of measuring quality of life in cancer patients is required, it must come from patients themselves and not from nurses and doctors. Similarly, Caiman [19] has argued that quality of life can only be described and measured in individual terms: as the components constituting quality of life are personal, an approach where subjects create their own definitions may be a more appropriate measure. THE STUDY

The overall aim of this study is to identify lay definitions of quality of life among people aged 65 and over, and to examine the relevance of available scales currently used to measure quality of life. It is proposed that some of problems of defining and measuring quality of life can be dealt with by asking people to describe the quality of their own lives, in their own words, using their own frames of reference. T H E SAMPLE

The sample is drawn from three existing samples of older people living at home in Hackney and Braintree, currently involved in a longitudinal survey aiming to identify factors associated with the successful survival of older people living at home, funded by the Joseph Rowntree Foundation.

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The first sample consists of the survivors of a census of traceable people who were aged 85+ in 1987, and living at home in Hackney, London [20]; the second sample consists of the survivors of a random sample of people who were aged between 65 and 85 years in 1989, and living at home in Hackney [21]; and the third sample consists of the survivors of another random sample of people aged between 65 and 85 years in 1989, but living at home in Braintree, in Essex [22]. Details of the choice of these three samples have been reported elsewhere [20-22]. Using these three established samples will enable analyses of the findings in relation to data gathered for the longitudinal survey. It also provides an opportunity to compare data gathered not only from different age groups of the elderly population, but also from different areas: Hackney is an inner London borough, with high social deprivation scores, based on census data; compared with Braintree, in Essex, which is a semi-rural area, and has a low social deprivation score, based on census data. METHODS

This study has three stages. In stage one every respondent was asked to complete one of three randomly allocated pairs of scales. Scales were selected because they are among the more commonly used to measure quality of life, or its dimensions. They were administered according to their instructions, and any difficulty with each of the scales was recorded. The scales were administered in pairs as it would have been too great a task for the elderly respondents to complete all six of the scales, and in any case it may well have been an invalid exercise for them to complete all six. In addition, a sub-sample of 70 respondents from each of the three samples (n = 210) were asked a brief set of umprompted open questions about the quality of their lives (see Fig. 1). Answers were written down by the researcher verbatim and then open coded, and any difficulties with the concept were recorded. The specific aim of this stage of the study was to test the ability of older people to talk about the concept of quality of life, and to begin gathering their thoughts about what the concept meant to them, as well as their responses to and scores attained using the various scales. This paper focuses on the respondents thoughts on what the term 'quality of life' meant to them. In stage two, in-depth unstructured interviews were conducted with forty of the respondents from Hackney (n = 20) and Braintree (n = 20) in order to gather more qualitative data about quality of life. In stage three, group discussions with established groups of elderly people from Hackney and Braintree to discuss the concept of quality of life have been carried out with the aim of identifying a wider, societal or community view of the quality of life of older people living at home, beyond the individual's views.

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Mor~ Fa~uhar i.

How would you describe

the quality of your life?

Why do you say that? 2.

What things give your life quality?

3.

What things take the quality away from your life?

4.

What would make the quality of your life better?

5.

What would make the quality of your life worse? Fig. l. Briefsetofunpromptedopenquestions. RESULTS

This paper presents the initial findings from stage one of the study; specifically, it focuses on the respondents' responses to the brief set of open questions about the quality of their lives. As would be expected in samples of people aged 65 and over, the majority of respondents were female. The sex distribution of the very elderly (85+ years) Hackney sample was 88% female and 12% male; in the younger (65 < 85 years) Hackney sample it was 60% female and 40% male; and in the Essex sample it was 66% female and 34% male. The social class of the two Hackney samples (coding using the Registrar General's Classification of Occupations) was lower than that of the Essex sample: the majority of respondents the two Hackney samples were from social classes IIIm, and IV (61% of the very elderly and 68% of the younger elderly samples); the majority of the Essex sample were from social classes IIInm and IIIm (66%). Firstly respondents were asked how would they describe the quality of their lives as a whole. Replies were coded according to whether they gave a very positive (e.g. 'very good'), positive (e.g. 'quite good'), neutral (e.g. 'well it's OK' or 'I mustn't grumble'), negative (e.g. 'not very good'), or very negative (e.g. 'terrible') response, and quotes which best illustrated typical responses to the questions were selected from representative respondents across the three samples. If the responses for the three sub-samples are taken as a whole, 40% described the quality of their lives very positively; 21% described it positively; 23% either gave a neutral description or said that the quality of their lives varied day-by-day; 1%o described it negatively; and 15% described it very negatively. However, treating the elderly in a homogenous way like this masks differences not only between age groups, but also between area of residence. Table 1 shows their responses by age and area. Comparison of the percentage of respondents who described the quality of their lives very negatively in the very elderly sample to the percentages in the two younger samples, shows some of the differences by age group. For example, 25% (n = 17) of the very

elderly, compared with 6% (n = 4) and 3% (n = 2) of the two younger samples, described the quality of their lives very negatively. Similarly, comparison of the percentages of respondents who described the quality of their lives very positively in the two Hackney samples to the percentage in the Essex sample, shows some of the differences by area. For example, 52% (n = 37) of the Essex sample compared with 37% (n = 25) and 40% (n = 26) of the two Hackney samples, described the quality of their lives very positively. In addition, 6% (n = 4) of the very elderly sample in Hackney said that the quality of their lives had been good previously, but with increasing age the quality had deteriorated. And 3% (n = 2) of the very elderly sample and 6% (n = 4) of the younger elderly sample in Hackney either did not understand the term 'quality of life' or were unable to answer the question. No one in the Essex sample had any difficulty with the question. Respondents were then asked why they had described the quality of their lives in that way. Responses to this and the following questions were open coded: the categories for the coding being generated by the answers themselves. Of those giving a generally positive description of the quality of their lives, nearly half of the very elderly and a quarter or more of the younger elderly compared their lives to the lives of others in some way. For example, as two of the very elderly said: When you hear of some people what they go through--I've been lucky really I expect some people are worse off than me--and they're younger. The way some of them grumble! Table 1. How would you describe the qualityof your life? Hackney Essex

Very positive Positive Neutral Negative Very negative No. of respondents

85+

65 < 85

65 < 85

% (,) 37 (25) 19 (13) 18 (12) I (1) 25 (17) (68)

% (n) 40 (26) 27 (18) 27 (18)

% (,) 52 (37) 17 (12) 24 (17) 3 (2) 3 (2) (70)

6 (4) (66)

Elderly people's definitions of quality of life Table 2. Why do you say that? (positives) Essex

Hackney

Compared to others Social contacts Health/mobility/ability Material circumstances Activities No. of respondents

85 +

65 < 85

65 < 85

% (n) 46 07) 53 (20) 47 (18) 16 (6) 16 (6) (38)

% (n) 25 (11) 41 (18) 55 (24) 23 (10) 5 (2) (44)

% (n) 29 (14) 51 (25) 55 (27) 80 (39) 14 (7) (49)

O t h e r s referred to specific aspects o f their lives, a n d their responses are shown in Table 2 (percentages o n this a n d the following tables do n o t equal 100% as r e s p o n d e n t s were free to give as m a n y different answers as they wished). W h e n r e s p o n d e n t s spoke of their social contacts, they were usually referring to their family or children in particular; when they spoke of their material circumstances, they usually referring to their financial situation, the fact t h a t they h a d a good home, or t h a t they h a d everything they wanted. Perhaps the most striking difference between these three samples is in their material circumstances; those living in Essex appeared to be far more contented with their material circumstances t h a n those in Hackney. This was reflected in data gathered for the longitudinal survey which indicated higher percentages of h o m e ownership a n d higher levels o f income in Essex t h a n in Hackney: 55% of r e s p o n d e n t s in Essex were owner-occupiers c o m p a r e d with 14% a n d 15% of the younger a n d older samples respectively in Hackney; and, 34% o f r e s p o n d e n t s living alone in Essex h a d a weekly income o f £70 or m o r e c o m p a r e d with 18% a n d 13% of the younger and older samples respectively in Hackney. Table 3 shows the responses of those who gave a generally negative or neutral description of the quality of their lives. W h e r e r e s p o n d e n t s spoke of their reduced social contacts, these were usually due to the d e a t h of friends or family members. F o r example, one recently widowed (very elderly) lady said: Now he's gone it's not so good. Losing him was the worst thing in my life. I suppose I was lucky to have him so long, Table 3. Why do you say that? (negatives/neutral) Hackney Essex

Helplessness/disability/ ill health Unhappy/miserable Old age/desire to be young Reduced social contacts Material circumstances No. of respondents

SSM 41/10~H

85+

65 < 85

65 < 85

% (n)

% (n)

% (n)

47 (14) 20 (6)

32 (7) 14 (3)

24 (5) 24 (5)

17 (5) 17 (5)

9 (2) 9 (2) 36 (8) (22)

10 (2) l0 (2) 24 (5) (21)

(30)

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Table 4. What things give your life quality? Hackney Essex

Nothing Family (children) Activities Other social contacts Health Material circumstances No. of respondents

85+

65<85

65<85

% (n) 12 (8) 34 (23) 29 (20) 25 (17) 10 (7) 10 (7) (68)

% (n) 3 (2) 40 (26) 23 (15) 23 (15) 35 (23) 23 (15) (66)

% in) 49 (34) 49 (34) 21 (15) 24 (17) 21 (15) (70)

but that doesn't make it any better when it comes ... my life's gone with him really ... the same thing could have happened to him. The very elderly sample seemed more concerned with their state of health a n d reduced functional ability, but did n o t m e n t i o n i n a d e q u a t e material circumstances here. R e s p o n d e n t s were then asked what things gave their lives quality (irrespective of how they h a d described the quality of their lives). Twelve percent (n = 8) of the very elderly a n d 3 % (n = 2) of the younger elderly samples living in Hackney said nothing gave their lives quality; no one in the Essex sample said this. Table 4 shows these and other respondents' responses a n d d e m o n s t r a t e s that activities were m e n t i o n e d most frequently by the younger Essex sample, a n d b o t h of the younger samples more frequently m e n t i o n e d health as something that gave their lives quality t h a n the very elderly sample. One very elderly lady said: I like the sunshine--1 don't care for the wind if I can sit on my chair on the balcony in the sunshine, I can sit and read, and watch the people go b y . . . see the kids go by from school. Reference to their family was usually related to their children, a n d activities could be those within or outside of the h o m e such as going out to clubs or out to the park, watching television or reading. O t h e r social contacts were not specifically family, such as friends a n d neighbours, or simply enjoying other people's c o m p a n y , and again their material circumstances referred to their financial situation, their home, or the fact that they h a d everything they wanted. R e s p o n d e n t s were then asked what things took the quality away from their lives. Thirteen percent (n = 9) of the very elderly a n d 6 % (n = 4) of the younger elderly samples living in Hackney, a n d 21% (n = 15) of the Essex sample said that nothing t o o k the quality away from their lives. These a n d the responses of other r e s p o n d e n t s are s h o w n in Table 5. Reduced social contacts a n d feelings o f loneliness were again often due to the d e a t h of friends or family; ill health included pain or loss o f sensory ability; a n d feelings of misery or u n h a p p i n e s s was

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Morag Farquhar

Table 5. What things take the quality away from your life? Hackney Essex

Nothing Reduced social contacts II1 health Helplessness/immobility Housebound Material circumstances Miserable/unhappy No. of respondents

85+

65 < 85

65 < 85

% (n) 13 (9) 32 (22) 26 (18) 21 (14) 16 (ll) 10 (7) 10 (7) (68)

% (n) 6 (4) 30 (20) 17 (11) 6 (4) 6 (4) 39 (26) 11 (7) (66)

% (n) 21 (15) 31 (22) 17 (12) 14 (10) 14 (10) 14 (10) (70)

often a c c o m p a n i e d by a feeling t h a t they h a d no future. O f m o s t note are the higher percentages reporting helplessness/immobility a n d h o u s e b o u n d ness in the very elderly sample, a n d the high percentage o f the younger elderly in H a c k n e y reporting p r o b l e m s with their material circumstances. As two very elderly r e s p o n d e n t s said: I miss someone to be able to talk to, to make decisions with ... I don't like to be so lonely. So many things--the freedom to be able to go out is worth such a lot. You meet other people, you converse with them ... in this life you are waiting for someone to turn up. I won't be sorry when it's all over. R e s p o n d e n t s were asked w h a t would m a k e the quality o f their lives better. Ten percent (n = 7) of the very elderly sample, a n d 2 9 % (n = 19) of the younger elderly sample living in Hackney, a n d 2 1 % (n = 15) of the Essex sample said t h a t n o t h i n g could m a k e the quality o f their lives better or, more often, t h a t they did n o t w a n t to change any aspect o f their lives. F u t u r e analyses will identify w h e t h e r or not this g r o u p is c o m p o s e d mainly o f those with a p o o r self rated quality o f life, whose aspirations m a y have been lower. Table 6 shows the responses o f these a n d o t h e r respondents. T h o s e w h o w a n t e d to be more mobile/able usually specified t h a t they w a n t e d to be able to go out more a n d n o t just to be more mobile within their home; those w a n t i n g to m o v e house usually wanted to be nearer their families; those w a n t i n g more c o m p a n y spoke mainly a b o u t a need for 'real' f r i e n d s h i p s - friendships t h a t were equally balanced; a n d those w h o wanted to improve their material circumstances Table 6. What would make the quality of your life better? Hackney Essex

Nothing More mobile/able Better health Move house Company Material circumstances No. of respondents

85+

65 < 85

65 < 85

% (n) 10 (7) 40 (27) 18 (12) 13 (9) 12 (8) 10 (7) (68)

% (n) 29 (19) I I (7) 9 (6) 30 (20) 9 (6) 33 (22) (66)

% (n) 21 (15) 16 (11) 21 (15) 17 (12) 3 (2) 34 (24) (70)

Table 7. What would make the quality of your life worse? Hackney Essex

Losing anything Losing family Immobility/housebound Ill health Losing home/income No. of respondents

85+

65<85

65<85

% (n) 6 (4) 40 (27) 22 (15) 21 (14) 15 (10) (68)

% (n) 3 (2) 52 (34) 14 (9) 23 (15) II (7) (66)

% (n) 56 (39) 34 (24) 21 (15) 7 (5) (70)

usually w a n t e d a higher income or a desired specific items such as a new radio. One lady said: If I could only be somewhere where there's other people to look at, or to talk to. So many hours of the day I'm on my own. I go and lean on the doorway if it's warm, just to see someone. G i v e n the results so far, neither the higher percentage of very elderly r e s p o n d e n t s w h o wanted to be m o r e mobile or able, n o r the higher percentage o f younger r e s p o n d e n t s in H a c k n e y who wanted to improve their material circumstances was surprising, however w h a t was not anticipated was that over a third o f those in Essex also m e n t i o n e d material circumstances. Finally, r e s p o n d e n t s were then asked what would m a k e the quality o f their lives worse. Six percent (n = 4) o f the very elderly a n d 3 % (n = 2) o f the younger elderly in H a c k n e y said t h a t to lose a n y t h i n g would m a k e the quality o f their lives worse. Table 7 shows the responses o f these a n d those other respondents w h o were able to be more specific t h a n this. R e s p o n d e n t s w h o m e n t i o n e d b e c o m i n g immobile or h o u s e b o u n d usually specifying loss o f independence; a n d those referring to the deterioration in their material circumstances usually spoke of losing their home, their pension, or specific possessions. One very elderly gentleman said: The loss of the use of my limbs altogether.., if I had to sit in the chair and have people wait on me. I'd hate that. That's why I ask my son not to. CONCLUSIONS C o n t r a r y to the critics, these results d e m o n s t r a t e t h a t older people are willing a n d able to talk a b o u t quality o f life. This confirms the findings of a n A m e r i c a n researcher, A n d r e w s [9], who concluded t h a t people have given t h o u g h t to such matters. Indeed, a few o f m y respondents m e n t i o n e d the term 'quality of life' d u r i n g the m a i n interview before they were asked specific questions a b o u t the concept, a n d others indicated t h a t it was something they h a d t h o u g h t a b o u t previously. As one 91 year old said: It's surprising how you get used to things ... that's why Morag, make the most of your youth. I didn't think my

Elderly people's definitions of quality of life retirement would be like this... I thought I would be baking and on holiday. I used to keep my wardrobes tidy, but I don't now. It's very sad. This conclusion indicates that in-depth, unstructured, interviews about quality of life are possible; and this was confirmed in stage two of the study. When using the term 'quality of life', respondents were not simply talking about the good things in peoples' lives, but the bad things too. When they were asked to describe the quality of their lives, respondents spontaneously gave an adjective, such as 'good' or 'bad', and they were able to say why the quality of their lives was 'good' or 'bad'; they talked about the nature of their lives, not just its attributes. However, a few respondents did answer by saying that their lives had 'no quality'. As the same 91 year old said: Once you get beyond a certain age there is no quality, that's my view ... I don't suppose the Queen Mother would say that. The results also show that, for older people living at home, there is more to quality of life than health. Indeed it appears from these initial questions that family relationships, social contacts, and activities are as valued components of a good quality of life as general health and functional status. This finding compares well with the findings of Hall [12] who found that the largest single category referred to was the family, home life and marriage, followed by happiness and health. However, some caution is required here as social contacts and activities are to a certain extent dependent on reasonable health and functional status. As a very elderly respondent in Hackney said: If I had a bit better health, which would enable me to go to the theatre or the cinema (even though I can't see it), I would like that. It appears from these initial findings that the very elderly are more likely to describe the quality of their lives in very negative terms than the younger elderly. As there is no very elderly sample in Essex with which to compare this finding, it could be argued that this is purely a reflection of their area of residence. However, if this were so, then one would have also expected a higher percentage of the younger elderly sample living in Hackney to have described the quality of their lives in this way. And finally, it appears that those living in a semi-rural area are more likely to describe the quality of their lives in a very positive way than those living in an inner city area. Again, it could be argued that this is a reflection of the fact that the Essex sample comprises of only the younger elderly, however the differences are apparent even when comparing only the two younger samples in each area. These last two conclusions could be the result of differences in the sex and social class distributions of the three samples.

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Future analyses will examine the relevance to these findings to the scales completed by respondents in stage one. Analyses of the in-depth interviews conducted in stage two and data collected at stage three will further test the conclusions drawn from stage one to date and help clarify model for quality of life, making its measurement more valid and meaningful. This study dealt with issues high on the agenda of the current debate on quality of life research: most notably, the definition and measurement of the concept. It has implications for those involved in both quality of life research and in health and social service policy for older people. In terms of quality of life research, and in particular health services research, this study calls for a consensus or, at the very least, clearer definitions of the term quality of life. It also questions the validity of the operationalization of quality of life simply in terms of health status measures and scales of functional ability given the finding that social contacts appear to be as valued a component of a good quality of life. If researchers must use the term quality of life in the context of research methodologies that focus purely on health status measures or measures of functional ability, they should describe them as measures of 'healthrelated-quality-of-life', not quality of life itself. This study suggests that measures of quality of life for older people living at home should only be selected if they include measures of social contacts and activities, emotional wellbeing (including life satisfaction), adequacy of material circumstances, suitability of the environment, as well as health and functional ability. Scales covering most of these dimensions do exist but may not be selected because they are, for example, either population or disease specific, or because of their length. An alternative would be to use a measure composed of valid and reliable scales covering each of the dimensions of quality of life. Examples of these can be found in review texts such as McDowell and Newell, 1987 [23], or, more recently, Bowling, 1991 [24]. In terms of health and social service policy for older people, this study calls for policies aimed at maintaining or improving the quality of life of older people living at home to be both age and area sensitive. For example, although the maintenance of social contacts was important for maintaining a good quality of life for most respondents, those respondents living in Hackney were more concerned with their generally poorer material circumstances than those living in Essex, and respondents from the very elderly sample were more concerned with their health and reduced functional ability than those from the two younger samples. One of the limitations of this study is that it focuses on older people living at home. It is unknown how generalizable the findings are to the older population in general (i.e. including people from outside the areas of study, and those living in

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institutions), n o r indeed h o w these findings relate to people u n d e r retirement age. These could be areas for future research. F u t u r e analyses o f this d a t a will focus o n the reliability a n d validity o f the coding the responses to the brief set o f open questions, as well as the representativeness o f the three sub-samples, c o n t e n t analysis o f the indepth interviews a n d c o m p a r i s o n o f the scores from the scales tested. Acknowledgements--The author would like to thank Dr Ann Bowling for her supervision, Gill McAllister for her support, those who commented on oral versions of this paper, as well as the ongoing cooperation of the respondents without whom this work would not have been possible. REFERENCES

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