Author
STOLTZ Peter; UDDEN Giggi; WILLMAN Ania;
Title
Support for family carers for an elderly person at home: a systematic literature review.
Journal citation/publication details
Scandinavian Journal of Caring Sciences, 18(2), June 2004, pp.111-119.
Summary
This review of 26 quantitative and qualitative studies focuses on the experiences and support needs of the family carers of older people, and is intended to inform Swedish policy and practice. It is based almost solely on US literature but the authors believe that there is no particular reason why this evidence should not be of relevance elsewhere
Context
In Sweden , as in many other countries, an ageing population with increasing care needs is facing a steady decline in the provision of formal care services. Family carers are likely to have to take on an even greater burden of care, and government policies are increasingly focused on supporting them. This review contributes to the knowledge base on this issue by focusing on carers' perspectives of their support needs.
Methods
What sources were used?
Medline, CINAHL (Cumulated Index to Nursing and Allied Health Literature) and the Cochrane Database of Systematic Reviews were searched. Searches of the internet, named Swedish ‘reference databases' and publications of the Swedish Board of Health and Welfare were also carried out. The material identified from these latter searches was ‘primarily used for background description and for discussion of findings'. The references of selected studies were not checked, and the authors note that both the number of databases searched and the search strategy may have been inadequate to identify ‘all relevant references'.
What search terms/strategies were used?
The following were used, or adapted as necessary to the particular database: family, intergenerational relations, spouses, home nursing, informal caregiver, family carer, family caregiver, family caring, aged, aged 80 and over, frail elderly.
What criteria were used to decide on which studies to include?
Studies focusing exclusively on co-habiting family carers of people aged 65 or over, and using either quantitative or qualitative methods, were selected. In addition studies had to deal primarily with ‘support' (types, needs for, experiences of etc), and be in English or a Scandinavian language. No date limitations were imposed.
Who decided on their relevance and quality?
The searches delivered 734 papers, of which 333 were acquired in full text as potentially meeting the inclusion criteria. After an ‘initial screening process' 37 remained, which ‘were subjected to a deeper classification and quality assessment' using methods derived from the evidence based medicine guidance literature. The final set of studies was graded on a scale laid out in Table 1, and based on type of method and quality of its implementation. No details of specific responsibilities for relevant/quality assessment are given, but it is stated at the end of the paper that this was done by two independent reviewers. The roles of the authors are also summarised at the end of the paper.
How many studies were included and where were they from?
The review covers 26 papers. There is no descriptive tabulation of the studies or specific indication of their geographical origin, but the authors note that the studies ‘almost exclusively concern family carers of persons with Alzheimer's disease in the USA '.
How were the study findings combined?
The 26 papers ‘were read repeatedly' and the findings extracted and summarised in tables, which are not reproduced in the paper. The synthesis combined both qualitative and quantitative findings, and the authors admit that ‘methodological considerations may have been insufficiently explored when fusing the results…into a coherent text'. The findings were graded according to scientific strength: A-graded conclusions were supported by two or more studies of high quality, or by one high quality and two more medium quality studies; and B-graded conclusions were supported by one high and one medium quality study, or by at least two medium quality studies.
Findings of the review
The conclusions are summarised in Table 2, which lists each conclusion, the strength of evidence, and the supporting references with details of the type of study and its quality. They fall into four main categories.
The need for support
Eleven studies (five high quality, five medium, one low) dealt with this issue. There is strong evidence to show that carers want to satisfy their learning needs in groups with peers, and desire respite care. There is moderate evidence to support a desire for networking in social support groups.
Supportive interventions
Five studies (one high quality, one medium, three low) addressed interventions to improve carer outcome. There is moderate evidence in favour of carer education programmes as a method of supporting both carers and their elderly charges. However, there is insufficient evidence in support of hospital-based respite care, or of the role of positive thinking and focusing on rewards in caregiving as a way of helping carers to keep going on a day-to-day basis.
Experiences of family caring
Seven studies focused on this area (one high, four medium and two low quality). There is strong evidence that carers experience negative emotions, burden, stress and worry when caring. There is moderate evidence to support fears of social isolation, and fears of loss of control, relationship role changes and loss of reciprocity.
Ethnicity
Two studies covered caring from an ethnic or cultural perspective (one high and one low quality). However, there is insufficient evidence to show that there are ethnic differences in how carers perceive their role.
Authors' conclusions
The findings show a mis-match between the generally good quality of evidence on what carers feel (fears of isolation and the burden of care) and want (networking and respite care), and the poorer quality of evidence on the effectiveness of interventions where they have been provided. There is also a lack of balance in the evidence on the experience of caring, which largely reflects negative experiences, even though ‘it is not unreasonable to assume that such emotions are counterbalanced by the positive aspects of caring'. Overall, ‘the question of what constitutes support for family carers may still await a comprehensive answer'.
Implications for policy or practice
The lack of good evidence on interventions means that no specific recommendations are made in this area. However, the better quality evidence on carers' experiences and wants may suggest that policy makers and practitioners ‘could perhaps emphasize the social dimension in support for family carers, rather than the current instrumental approach in service provision'. At present, ‘such forms of [instrumental] support, however well intended, might not all be appreciated by the cared-for person or the family carer'. The authors also comment on transferability issues. Although the review is dominated by US research, ‘so far no indicators have been made explicit suggesting that the experiences of family caring are so widely disparate that transferability would be impossible'.