Caring-related inequalities in psychological distress in Britain during the 1990s

Journal of Public Health, Dec 2003

Background This paper examines recent trends in inequalities in psychological distress associated with the provision of unpaid care by those who look after frail older people and younger disabled adults and children. Caring activities intensified during the 1990s, associated with increasing amounts of time devoted to the more demanding types of care and to those relationships that typically make heavy demands on the carer. Heavy involvement in caregiving is often associated with symptoms of anxiety and distress, and the intensification of care may increase rates of distress in carers relative to that in non-carers. Methods A secondary analysis was carried out of data drawn from the first 10 waves of the British Household Panel Survey covering 1991–2000, based on around 9000 adults interviewed personally in successive waves. Symptoms of psychological distress, including anxiety and depression, were assessed using the 12-item General Health Questionnaire. Results Carers present higher rates of distress than noncarers and the health gap widens as the definition of caregiving focuses on those living with the person they care for, and those devoting 20 h or more per week to their caring activities. Differences in distress rates between carers and non-carers are greater for women than for men. There is no support for the hypothesis that inequalities in distress associated with caregiving have increased over time. Conclusion There was no change during the 1990s in the extent of inequalities in psychological distress associated with caregiving in Britain. The need to maintain carers' emotional and mental health is as compelling as ever it was.

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Caring-related inequalities in psychological distress in Britain during the 1990s

Journal of Public Health Medicine DOI: 10.1093/pubmed/fdg082 Caring-related inequalities in psychological distress in Britain during the 1990s Michael Hirst 0 1 0 Social Policy Research Unit, University of York , Heslington, York YO10 5DD 1 Michael Hirst, Research Fellow Background This paper examines recent trends in inequalities in psychological distress associated with the provision of unpaid care by those who look after frail older people and younger disabled adults and children. Caring activities intensified during the 1990s, associated with increasing amounts of time devoted to the more demanding types of care and to those relationships that typically make heavy demands on the carer. Heavy involvement in caregiving is often associated with symptoms of anxiety and distress, and the intensification of care may increase rates of distress in carers relative to that in non-carers. Methods A secondary analysis was carried out of data drawn from the first 10 waves of the British Household Panel Survey covering 1991-2000, based on around 9000 adults interviewed personally in successive waves. Symptoms of psychological distress, including anxiety and depression, were assessed using the 12-item General Health Questionnaire. Results Carers present higher rates of distress than noncarers and the health gap widens as the definition of caregiving focuses on those living with the person they care for, and those devoting 20 h or more per week to their caring activities. Differences in distress rates between carers and non-carers are greater for women than for men. There is no support for the hypothesis that inequalities in distress associated with caregiving have increased over time. Conclusion There was no change during the 1990s in the extent of inequalities in psychological distress associated with caregiving in Britain. The need to maintain carers' emotional and mental health is as compelling as ever it was. health inequalities; carers; gender; psychological distress - Introduction Most disabled and elderly people live in private households and the support they receive in the community is almost wholly provided by family, friends or neighbours. In 2000, there were an estimated 6.8 million adults providing unpaid care for disabled and elderly people in Britain, including 1.7 million who devoted at least 20 h a week to their caring activities.1 Recent policy initiatives have drawn attention to carers’ needs for information, support, and help in maintaining their own health.2 Driving current policy interest in supporting the caring role of individuals and families is the need to plan for an increasing number of elderly people who will require health and social care.3 A related issue, and the focus of this paper, is the changing nature of unpaid care – the types of help given and the time spent on caring activities – and the implications for carers and for carer support. Recent trends Comparing patterns of caregiving in the 1985, 1990 and 1995 General Household Survey, Parker detected ‘a continuing sharpening of the sharp end of caring’, that is an intensification of caring activities particularly in households where the carer lives with the person they care for.4 The proportion of carers with sole responsibility for the person they look after increased, especially after 1990.5 Carers providing the more demanding forms of care – help with personal care (for example, bathing, dressing or using the toilet) and mobility – also increased, as did the amount of time devoted to their caring activities.6 It is estimated that the number of carers providing at least 20 h care per week to someone aged 65 and over increased by 190 000 between 1985 and 1995.7 These trends were associated with increases in spouse care and parents caring for children under 16 years; caring for elderly parents who lived in a different household from that of the carer also increased, particularly parents aged 85 years and over; in contrast, the less intensive forms of practical help (for example, housework or shopping) to friends and neighbours declined.8 The latest General Household Survey, conducted in 2000, indicates that these trends have mostly continued beyond 1995, or have not been reversed.1 Comparable trends are evident when charting annual changes in caring activities from 1991 to 1998 using the British Household Panel Survey.9 More adults are becoming heavily involved in providing longer episodes of care,10 and further increases in caregiving by elderly spouses or partners are anticipated.3 Public health implications A sustained trend towards more intensive caregiving would have three major implications. First, there is the impact on carers themselves. Although carers can derive considerable satisfaction from their caring experiences,11 there is an abundance of studies which show that caring for disabled and elderly people is associated with increased rates of psychological distress, including anxiety and depression.12,13 There are also carers’ own reports of adverse effects on their social and emotional well-being, as well as evidence of increased psychiatric illness and compromised immune response in those burdened by caring responsibilities.1,14,15 Evidence of adverse effects on carers’ physical health is less conclusive, although some carers face particular risks of injury associated with heavy caring activities.16 Thus, an increase in the intensity of caring activities might increase the health risks for carers, especially of psychological distress. Second, the health of carers is important for maintaining the quality of their caring relationships. Coping with the demands of care, and a willingness to continue caring, are both associated with lower levels of stress in carers.17 Equally, carer ill health or distress is often an important contributory factor in elderly people’s use of health services including: admission to, delayed discharge from, or unplanned readmission to hospital; referral to a day hospital or geriatric unit; and admission to residential care or nursing homes.18–29 Poor health in the carer population therefore can have important implications for service planning in the formal health and social care sectors. Third, an intensification of caring activities is likely to increase demands from carers for recognition and support. Under the Carers Act 1995, local social services authorities must, when asked, assess the needs of carers who provide a ‘substantial amount of care on a regular basis’.30 The Carers and Disabled Children Act 2000 strengthened carers’ rights to assessment and service support, and practitioners are now required to consider the sustainability of the caring role.31 Research shows that those devoting more than 20 h a week to their caring activities are most likely to be providing personal and physical assistance to someone who lives in the same household with no help from other people.32 This threshold has assumed considerable importance in assessing carers’ support needs and identifying those who are most at risk.30,33 An increasing number of heavily involved carers would require additional resources to assess their needs and provide appropriate support, including services for carers to take a break from caregiving. This paper does not address these issues directly but rather prepares the ground by examining trends in carers’ mental health over a recent 10 year period. More specifically, it aims to assess whether differences in rates of psychological distress between carers and non-carers have changed over time. Sample design The analysis is based on data drawn from the British Household Panel Survey (BHPS). The BHPS is an annual survey of a nationally representative sample of more than 5000 private households in England, Scotland and Wales, yielding almost 10 000 adult interviews each year.34 The panel was recruited in 1991 when information was gathered on all those living in private households at addresses selected according to a twostage clustered probability design and systematic sampling. The sample for subsequent waves includes all adults enumerated at wave one plus their natural descendants on turning age 16. Other adults in their current household are also interviewed. Because the sample is augmented in this way, it remains broadly representative of the general population throughout the 1990s. Each wave can be treated as a cross-sectional survey to investigate time trends and this report is based on the first 10 waves of the BHPS covering 1991–2000. Identifying carers Respondents over 16 years are asked whether they provide care for someone who is sick, elderly or disabled. Caregiving is defined as looking after, giving special help or some regular service that is not provided in the course of paid employment. This definition includes carers looking after clients of voluntary organizations but these carers are excluded here because what motivates them to care, and the choices available to them, are distinct from those of family carers. Care provided by children and young people is not recorded in the BHPS. Carers are distinguished according the locus of care and the amount of time spent on caring activities. The term ‘co-resident’ describes those who provide care inside their own household; ‘extra-resident’ denotes caring for someone living in a different household or a communal establishment. Individuals who provide care in both spheres are counted as co-resident carers. For reasons given above, the analysis also distinguishes heavily involved carers: those providing at least 20 h of care a week. Psychological distress Mental or emotional distress was assessed by the General Health Questionnaire (GHQ), a widely used measure of subjective well-being with demonstrable validity and reliability.35 It asks respondents about their recent experience of symptoms known to be indicative of anxiety and depression, social dysfunction, loss of confidence and self-esteem. Because the GHQ covers a wide range of symptoms, it is considered more appropriate for measuring the mental health of carers than instruments for detecting depression alone.36 The 12-item version of the GHQ was used to count the number of symptoms of distress. The symptom scale is often used for identifying adults with common mental health problems and estimating the prevalence of psychiatric illness. It ranges from zero to 12 and validity studies indicate that presenting four or more symptoms is associated with an 80 per cent probability of a formal psychiatric diagnosis.37 This threshold is used here to investigate differences between carers and noncarers in the proportion presenting high distress scores. Pevalin found no evidence of retest effects across seven waves of the BHPS and concluded that the GHQ12 is a reliable instrument for measuring psychological distress in population-based studies with a 1 year interval between applications.38 The GHQ12 can also be scored to produce a severity scale of psychological distress (range 0–36). Results based on this scale produced virtually identical conclusions to those based on the symptom scale and are not presented here. Analysis Differences between carers and non-carers in the proportions with high GHQ scores were assessed by analysis of variance. Potential confounding variables were selected a priori because of their probable associations with both psychological distress and caregiving (see Appendix). When age, marital status and other socio-demographic factors are taken into account, differences between the proportions of carers and non-carers with high distress scores can be interpreted as caring-related inequalities. Interaction terms were included to investigate changes in the extent of inequalities over time, and trends were smoothed to take account of year-on-year fluctuations as a result of sampling variations. The analyses were conducted separately for men and women because their experiences of providing care differ widely, and gender inequalities in psychological health are marked.39,40 Sample numbers are given in the Appendix. Table 1 shows the proportion of non-carers who present more than three GHQ symptoms and the differences in proportions between carers and non-carers after adjusting for potential confounders. Most carers do not present high distress scores; however, carers present higher rates of distress than non-carers. As the definition of caregiving focuses on co-resident carers, and those devoting at least 20 h a week to their caring activities, the health gap widens. Distress rates are higher in women than in men, reflecting the female excess of psychological symptoms across the life course;40 however, inequalities associated with caregiving are greater for women than men. Across the study period, the difference in women’s distress rates between non-carers and those providing 20 h or more care per week is twice that of their male counterparts: over 12 and no more than six percentage points, respectively. Men who are heavily involved in their caring activities present similar distress rates to those of women who are reportedly not providing care (around 23 per cent on average). Between 1991 and 2000, differences in rates of distress between carers and non-carers fluctuate within a narrow range, and the interaction terms shown in Table 2 indicate that there is no significant widening or narrowing of inequalities over time. There is no support for the hypothesis that differences in levels of distress associated with caregiving increased during the 1990s. Equally, caring-related inequalities did not diminish: differences in rates of distress, especially between women who do and do not provide care, persist throughout the study period. There is a small but significant increase in women’s distress rates, amounting to around one percentage point every 3 or 4 years (Table 2). This trend is found irrespective of their involvement in caregiving, and differences in distress levels between women with and without caring responsibilities are more or less constant over time. Consequently, the rise in rates of distress for women providing care cannot be attributed solely to the intensification of their caring activities. Closer inspection of Table 1 indicates that men who provide care present higher rates of distress over time relative to noncarers, and the unadjusted interaction term in Table 2 reaches borderline significance (p = 0.09). This widening health gap is driven in part by a slight decline in non-carers’ distress rates so the increase in carers’ rates is somewhat less than implied. Following adjustment for age and other confounders, the observed increase in distress associated with men’s caring activities is halved and not statistically significant (Table 2). This paper describes recent trends in psychological distress associated with the provision of unpaid care. The expectation Non-carers All carers Co-resident carers† 20 h or more Non-carers All carers Co-resident carers† 20 h or more *Adjusted for potential confounders and sampling fluctuations over time. †Co-resident includes those providing both extra-resident and co-resident care. Table 2 Mean differences in the proportion of carers reporting more than three GHQ symptoms, relative to non-carers, by carer status, locus of care, hours caring per week and gender Interaction term: carer status by year All carers –0.06 Co-resident carers† –0.11 20 h or more –0.43 Women Unadjusted Adjusted Unadjusted Adjusted Men †Co-resident includes those providing both extra-resident and co-resident care. **p <0.01. *p <0.05. was that the gap in rates of distress between carers and noncarers would widen over time, in line with the observed intensification of caring activities. Carers present higher rates of distress than non-carers and the differences are greater where carers look after someone inside their own household, or devote more than 20 h a week to their caring activities. Rates of distress are also higher for women with caring responsibilities than for their male counterparts. Gender differences might be expected because rates of distress in the general population are invariably higher for women than men. However, inequalities in distress between those with and without caring responsibilities are greater for women than for men, drawing attention to gender differences in the experience of carer burden.41,42 Inequalities in rates of distress between carers and noncarers persisted across the study period. Differences in rates of distress associated with caregiving had not increased; equally, the health gap between carers and non-carers had not diminished by the end of the 1990s. Several processes may account for the lack of any observable impact of caregiving intensification on inequalities in reported distress: The first explanation touches on the definition and measurement of unpaid care. People who are closely involved at an emotional level with the person they look after, a spouse, partner or child especially, might regard caring as part of their normal everyday activities or simply fulfilling family obligations.43 If so, they might be less inclined to adopt the ‘carer’ label, especially where they are coping successfully with their caring responsibilities. However, the establishment of carers’ rights and the development of services and benefits have given priority to heavily involved carers, as have carers’ organizations at both national and local levels, and the importance of carers is now argued on moral, social and economic grounds.2 Consequently, the growing recognition of carers as a distinctive group of people with particular needs may have encouraged those who do not present symptoms of distress to identify themselves in household surveys. If this has happened, any tendency towards widening inequalities in rates of distress between carers and non-carers would have been contained or reversed. The second argument recognizes that widening inequalities may require a substantial increase in the number of carers at risk of psychological distress, a sustained increase in the risk of caring-related distress, or both. Although the number of heavily involved carers has increased,6,7,9 they still form a minority of the carer population: in 2000, no more than a third of carers looked after someone inside their own household, and one in four provided 20 h or more care per week.1 There is no firm evidence from this study that the risk of psychological distress in these carer sub-groups increased over time. Moreover, Pickard found that the number of adult children providing heavy care to elderly parents in the same household declined in the 10 years to 1995.7 Taken together, these trends indicate that the intensification of caregiving might have been insufficient to have a detectable impact on inequalities in distress rates at the population level. The third line of reasoning argues that increased recognition and support for carers has prevented or alleviated the adverse health effects of caregiving. During the 1990s, particular attention focused on developing carer support in doctors’ surgeries and the potential benefits for carers of closer collaboration between health and social services, and carers’ organizations. However, the impact of such developments has been limited and often short term, and questions remain about their effectiveness, the adequacy of the resources available, and the targeting of heavily involved carers.44–46 Implementation of the 1995 Carers Act, which gave carers’ the right to an assessment of their support needs, has also been patchy, and positive outcomes for carers are difficult to detect.47 Local support services that might help carers maintain their own health and well-being are under-resourced and underdeveloped; heavily involved carers were no more likely to take a break from caring in 1995 than in 1985.48 Grants for local authorities to develop services for giving carers a break from caring, and other initiatives launched as part of the Carers Strategy in 1999,2 would have occurred too late in the study period to have any discernible impact at the national level. None the less, existing care services might have protected carers’ health by targeting disabled and elderly people in greatest need of intensive support at home.49,50 Between 1992 and 2000, the number of home help or home care contact hours purchased or provided by English local authorities increased by 65 per cent, and the intensity of domiciliary care provision doubled from 3.2 h to 7.0 h per household per week.51 Whether such provision cushioned the impact of more intensive care demands on unpaid carers is debatable, however. Formal service providers rarely support heavily involved carers who are close relatives of the person they care for, or where they share the same household.52 Indeed, the number of people receiving home care fell during the 1990s;51 fewer than one in four people whose carer lived in the same household received any formal service support in 2000, a proportion that has declined since 1985.53,54 The impact of cohort effects on health gains might be expected to feed through fairly quickly because of rapid turnover in the carer population.10 Improvements in the psychological health and coping strategies of successive cohorts of carers would reduce caring-related inequalities if their impact were disproportionate to that of comparable gains in the general population. However, there was no evidence of such an effect. Trends in the psychological health of carers essentially parallel those of non-carers, pointing to some common underlying factor, or to different factors producing comparable outcomes in both groups. The national strategy for carers emphasizes the importance of promoting their health and well-being.2 Recent trends demonstrate a continuing need to maintain the emotional and mental health of carers, especially those women with heavy caring responsibilities; the evidence for doing so is as compelling as it ever was. Although the links between caregiving and psychological distress are imperfectly understood, caring-related inequalities in anxiety and depression are, in principle, avoidable and amenable to policy interventions. The challenge is to develop appropriate, co-ordinated responses from community health and social care services.55 Towards that end, the findings provide a national baseline against which to monitor the impact of prevention strategies and health promotion aimed at maintaining carers’ health and well-being. Acknowledgements The research was funded by the Department of Health as part of its Inequalities in Health Research Initiative. I am grateful to members of the research advisory group for reading an earlier draft of this paper and offering valuable comments. Data from the British Household Panel Survey were made available through The Data Archive in accordance with current ethical guidelines and data protection regulations. The data were originally collected by the ESRC Research Centre on MicroSocial Change at the University of Essex. Neither the original collectors of the data nor the Archive bear any responsibility for the analyses or interpretations reported here. The views expressed are those of the author and are not necessarily shared by any individual, government department or agency. 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Michael Hirst. Caring-related inequalities in psychological distress in Britain during the 1990s, Journal of Public Health, 2003, 336-343, DOI: 10.1093/pubmed/fdg082