Carer distress: A prospective, population-based study

https://doi.org/10.1016/j.socscimed.2005.01.001Get rights and content

Abstract

This study investigates whether transitions into and out of unpaid caregiving are associated with increased risk for onset of or delayed recovery from psychological distress, and traces the prevalence of distress across successive years of caring activity and after caregiving has ceased. The analysis is based on data from the British Household Panel Survey covering 3000 would-be carers, 2900 former carers, and 11,100 non-carers during the 1990s; their psychological well-being was assessed at annual intervals using the General Health Questionnaire. Carers providing long hours of care over extended spells present raised levels of distress, women more so than men. Compared with non-carers, risk for onset of distress increases progressively with the amount of time devoted to caregiving each week. Adverse effects on the psychological well-being of heavily involved carers are most pronounced around the start of their care episodes and when caregiving ends. Ongoing care increases their susceptibility to recurring distress, and adverse health effects are evident beyond the end of their caregiving episodes. Several groups of carers experience psychological health inequalities compared with non-carers, especially those looking after a spouse or partner, and mothers caring for a sick or disabled child. The findings underline the importance for effective carer support and health promotion of early identification of carers, monitoring high risk groups, timing appropriate interventions, and targeting resources.

Introduction

An existing wealth of studies show that providing unpaid care for disabled and older people is associated with increased rates of anxiety, depression, and psychiatric illness compared with control groups or population norms (Schulz, O’Brien, Bookwala & Fleissner, 1995; Singleton et al., 2002). Carers report that caregiving adversely affects their emotional well-being and social functioning (Maher & Green, 2002). Compromised immune response in carers provides further evidence of emotional distress and may increase susceptibility to physical illness (Kiecolt-Glaser, Dura, Speicher, Traske & Glaser, 1991); mental or emotional distress may also increase risk of mortality among elderly spouse carers (Schulz & Beach, 1999).

Longitudinal perspectives show that rates of distress vary at different stages in a caring relationship (Aneshensel, Pearlin, Mullan, Zarit & Whitlatch, 1995; Nolan, Grant & Keady, 1996). A handful of studies have followed samples of non-carers until those who become caregivers can be compared with those who do not take on a caring role (Burton, Zdaniuk, Schulz, Jackson & Hirsch, 2003; Lawton, Moss, Hoffman & Perkinson, 2000; Seltzer & Li, 2000). Others have identified carers around key events such as discharge of the cared-for person from hospital (Canning, Dew & Davidson, 1996; Nieboer et al., 1998). Rather more studies have followed existing groups of carers, often covering the period after the cared-for person dies or enters institutional care (Bass & Bowman, 1990; Collins, Stommel, Wang & Given, 1994; Levin, Sinclair & Gorbach, 1989; Pot, Deeg, & Van Dyck, 1997; Seltzer & Li, 2000; Schulz et al., 2001).

Overall, the longitudinal evidence supports two broad conclusions. First, carers face increased risk of recurrent or persistent distress. A majority of studies report little variation or no systematic change in distress rates during care episodes; coupled with higher than expected levels of distress in the carer population, constant rates would indicate that carers are likely to report recurring symptoms (Ballard, Eastwood, Gahir & Wilcock, 1996; Buck et al., 2000; Kiecolt-Glaser et al., 1991; Pevalin & Goldberg, 2003; Taylor, Ford & Dunbar, 1995). Secondly, transitions into and out of care, and at key turning points, are often associated with significant change in levels of carer distress (Baumgarten et al., 1994; Burton et al., 2003; Cannuscio et al., 2002; Collins et al., 1994; Lawton et al., 2000; Levin et al., 1989; Nieboer et al., 1998; Pot et al, 1997; Seltzer & Li, 2000).

Longitudinal studies of carer distress are often difficult to compare as the groups of carers are different and because some designs have methodological limitations similar to those identified in Baumgarten's (1989) review of earlier cross-sectional studies: small, unrepresentative or non-probability samples, different measures of stress and caregiving, absence of comparison groups, and uncontrolled confounding effects. Evaluating longitudinal studies is further complicated by differences in the number and spacing of follow-up interviews, and lack of baseline measures before caregiving starts.

This study produces new evidence on the extent, timing and persistence of distress across the carer population, and identifies high risk or priority groups of carers. It examines individual change in psychological distress around transitions into and out of caregiving, and traces distress rates across successive years of caring activity and after caregiving has ceased. The findings relate to the experiences of unpaid caregivers in Britain during the 1990s. Throughout that period, there were around 6.5 million adults providing unpaid care for disabled and elderly people, including over 1.5 million who devoted 20 h per week or more to their caring activities (Maher & Green, 2002; Rowlands & Parker, 1998).

Section snippets

Methods

The study uses data from the first ten waves of the British Household Panel Survey (BHPS) covering the period 1991 to 2000. The BHPS is a general-purpose survey of the population living in a nationally representative sample of around 5000 private households in England, Scotland and Wales (Buck, Burton, Laurie & Lynn, 2002). When the panel was recruited in 1991, around 10,000 adults aged 16 years and over were interviewed. The sample for subsequent waves, conducted at approximately 1-year

Results

Table 1 summarises patterns of care in the first year of caregiving (c1), drawing attention to gender differences in the provision of care, contrasts between co-resident and out-of-household care, and variations in the intensity of care situations. Most carers look after someone living in a different household (women 78%, men 71%), and most carers provide under 10 h care per week (women 74%, men 76%).

More women than men take on a caring role (136 per 100 men) and women account for 60% of the

Discussion

While most caregivers do not present emotional health problems because of their caring responsibilities—chiefly those supporting someone who lives in a different household—risk of psychological distress increases with intensity of care. Carers providing long hours of care over extended spells present raised levels of distress, women more so than men. Adverse effects on the psychological well-being of heavily involved carers are most pronounced around the start of their care episodes and when

Conclusions

There will always be a need to refine our understanding of the health effects of caregiving, not least because the demands on unpaid carers are changing and their responses and expectations will evolve (Pickard, Wittenberg, Comas-Herrera, Davies & Darton, 2000). In the meantime, the findings draw attention to the importance of health promotion, prevention strategies and service responses to the psychological needs of carers. The adverse effects of caring on health are, in principle, avoidable

Acknowledgements

This research was funded by the UK Department of Health. The author wishes to thank members of the project's advisory group for reading draft reports and offering valuable comments. The journal's review process provided helpful suggestions on an earlier version of this paper. Data from the British Household Panel Survey were originally collected by the Research Centre on Micro-Social Change at the University of Essex and made available through The Data Archive. The analysis and interpretation

References (45)

  • M. Baumgarten et al.

    Health of family members caring for elderly persons with dementia

    Annals of Internal Medicine

    (1994)
  • B. Bowers

    Inter-generational caregivingadult caregivers and their ageing parents

    Advances in Nursing Science

    (1987)
  • D. Buck et al.

    Psychological morbidity among informal caregivers of older peoplea 2-year follow-up study

    Psychological Medicine

    (2000)
  • Buck, N., Burton, J., Laurie, H., & Lynn, P. (2002). Quality profile: British Household Panel Survey waves 1 to 10:...
  • L. Burton et al.

    Transitions in spousal caregiving

    The Gerontologist

    (2003)
  • C. Cannuscio et al.

    Reverberations of family illnessa longitudinal assessment of informal caregiving and mental health status in the Nurses’ Health Study

    American Journal of Public Health

    (2002)
  • C. Collins et al.

    Caregiving transitionschanges in depression among family caregivers of relatives with dementia

    Nursing Research

    (1994)
  • Department of Health (2002). Women's mental health: into the mainstream. Strategic development of mental health care...
  • D. Goldberg et al.

    The validity of two versions of the GHQ in the WHO study of mental illness in general health care

    Psychological Medicine

    (1997)
  • D. Goldberg et al.

    A user's guide to the General Health Questionnaire

    (1991)
  • J. Hippisley-Cox et al.

    Married couples’ risk of same diseasecross-sectional study

    British Medical Journal

    (2002)
  • L. Kalra et al.

    Training carers of stroke patientsrandomised controlled trial

    British Medical Journal

    (2004)
  • Cited by (270)

    View all citing articles on Scopus
    View full text