پریشانی مراقبت کننده: مطالعه آینده نگر مبتنی بر جمعیت

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.

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).

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 and amenable to policy interventions (Oyebode, 2003). To that end, policy makers should: • Recognise caregiving as a public health issue. The aim here would be to release additional health care resources for developing carer support services and encourage a more thoroughgoing approach to policies that promote carers’ health and prevent ill health. Public health programmes for maintaining health and function across the life course also need to take into account the potential benefits of alleviating the adverse health effects of caregiving. • Include caregiving on the health inequalities agenda. This move would require consideration of caregiving alongside other social determinants when tackling health inequalities, and monitoring health trends and outcomes. Moreover, it would encourage government departments to assess the health impacts of their policies and programmes on carers, and to consider whether and how they can reduce caring-related health inequalities. At the local level, progress towards genuine partnerships between primary and social care is opening up new possibilities for jointly commissioned and jointly provided carer services, and improved collaboration between frontline staff around carer support. The challenge is to find good evidence of their effectiveness and cost effectiveness, and their acceptability to carers and care recipients alike (Pickard, 2004).