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Importance

The importance of informal carers in the support of people with complex disabilities is well established. They are a major resource. Their activities are central to the success of clinical interventions and to policies aiming to reduce the length of hospital stays. The tasks undertaken by informal carers include nursing care, assisting with the administration of medications and injections, monitoring the cared-for person's general health and condition, and enabling early discharge from hospital (Dunnell and Dobbs, 1982; Robinson, 1985; Nolan and Grant, 1989; Twigg, 1990; Atkinson and McHaffie, 1992).

A large body of research demonstrates that carers face considerable stresses and burdens because of their role in health care (Parker, 1990). It also emphasises the importance of health services - hospital and community - in supporting them (Blaxter, 1976; Dunnell and Dobbs, 1982; Hunter et al., 1988; Smith and Cantley, 1985; Twigg, 1992, 1993; Twigg and Atkin, 1993). However, the evidence is that the response of health service professionals to date is ad hoc, confused and variable. Not only is there rarely a formal policy in relation to carers - they are often not visible to NHS professionals who may have little understanding of the problems carers face. This is partly because there is no clearly defined role for carers within the service system and no formal way of ensuring their needs are adequately addressed. Services focus primarily on the disabled person.

Recent research suggests that professionals have ambiguous, often confused, perceptions of carers. They may be seen as resources for the health care system, as co-workers, as clients in their own right - or as all three simultaneously. (Twigg, 1992.) These different conceptualisations shape the support that is offered. However, there is little evidence of carers' views or those of the person they are supporting being taken into account in service development. There is a need, therefore, to develop new forms of support for carers, drawing specifically on their perceptions of how they want to be perceived and supported. In many cases it will be appropriate to develop models of support which recognise that care is given within an existing relationship and to build on the views of the person who needs support, not only those of the presumed carer. This will require detailed information on the care needs arising from different conditions in order to develop both general models of support and more specific interventions. Carers of people with physical impairments due to spinal injury, for example, may have needs which are quite different from those of someone caring for a person with cognitive deficits following stroke or trauma. Terminal illness requiring palliative care may pose different demands from chronic illness or conditions such as Perthes Disease in young children. On the other hand, all seem likely to create common needs. Research needs to establish carers' needs at key transition points in the 'career' of the person they are looking after, and how this differs in relation to different conditions and for different types of carer. Whether differences between carers should be taken, systematically, into account in developing services is also a matter for research. Age, class ethnic and cultural differences are all potentially important. Personal factors may be equally important. Virtually nothing is known about the cost-effectiveness of different ways of supporting carers. Fundamental to the evaluation of new forms of support based on carers needs and preferences the development of appropriate outcome measures and the collection of full and accurate information on costs.

Examples of Research and Development Objectives

Note: the potential for overlap between Priority 4 and Priority B6 are such, that these priorities are supported by a common set of references and should be read together.

References

Atkin, K. (1992) 'Similarities and differences between informal carers' in Twigg, J. (ed) Carers: Research and Practice, London HMSO.

Atkin, K. and Rollings, J. (1992) 'Informal care in Asian and Afro-Caribbean communities: a literature review', British Journal of Social Work, 22, 3: 405-418.

Atkinson, F.I. and McHaffie, H.E. (1992) A Systematic Approach to Assessing Carers' Needs and Providing Nursing Support: An Evaluation of Outcomes, Edinburgh: Nursing Research Unit, University of Edinburgh.

Baldwin, S.M. And Parker, G. (1991) 'Support for informal carers', pp 163-198 in Dalley, G. (Ed) Disability and Social Policy, London: Policy Studies Institute.

Blaxter, M. (1976) The Meaning of Disability, London: Heinemann.

Dunnell, K. and Dobbs, J. (1982) Nurses Working in the Community, London: OPCS.

Green, H. (1988) General Household Survey 1985: Informal Carers, London HMSO.

Hills, D. (1991) Carer Support in the Community: Evaluation of the Department of Health Initiative: Demonstration Districts for Informal Carers 1986-1989, London: HMSO.

Hunter, D.J., McKeganey, N.P. and MacPherson, I.A. (1988) Care of the Elderly: Policy and Practice, Aberdeen: Aberdeen University Press.

Martin J, White A. The prevalence of disability among adults. OPCS surveys of disability in Great Britain Report 1. OPCS Social Survey Division. London: HMSO, 1988.

Martin J, White A. The financial circumstances of disabled adults living in private households. Report 2. OPCS Social Survey Division. London: HMSO, 1988.

Martin J, White A, Melter H. Disabled adults: services, transport and employment. OPCS surveys of disability in Great Britain Report 4. OPCS Social Survey Division. London: HMSO, 1989.

Meredith, H. (1992) 'Supporting the young carer', Community Outlook, May, 15-18.

Nolan, M.R. and Grant, G. (1989) 'Addressing the needs of informal carers: a neglected area of nursing practice', Journal of Advanced Nursing, 14: 950-61.

Parker, G. (1992) 'Counting care: numbers and types of informal carers', in Twigg, J. (Ed) Carers: Research and Practice, London: HMSO.

Parker, G. (1990) With Due Care and Attention: A Review of Research on Informal Care, second edition, London: Family Policy Studies Centre.

Parker, G. (1993) With This Body: Caring and Disability Marriage, Buckingham: Open University Press.

Robinson, J. (1985) 'Health visiting and health', in White, R. (Ed) Political Issues in Nursing: Past, Present and Future, Chichester: John Wiley.

Smith, G. and Cantley, C. (1985) Assessing Health Care: A Study in Organisational Evaluation, Milton Keynes: Open University Press.

Smyth M, Robus R. The financial circumstances of families with disabled children living in private households. Report 5. OPCS Social Survey Division. London: HMSO, 1989.

Twigg, J. (1990) 'Personal care and the interface between the district nursing and home help services' in Davies, B.P., Bebbington, A.C. and Charnley, H. (eds) Needs, Resources and Outcomes, Aldershot: Gower.

Twigg, J. (1992) Carers: Research and Practice, London: HMSO.

Twigg, J. and Atkin, K. (1993) Carers Perceived: Policy and Practice in Informal Care, Buckingham: Open University Press.