Service support to families caring for a child with a sickle cell disorder or thalassaemia: the experience of health professionals,service managers and health commissioners
Restricted accessResearch articleFirst published online July, 1998
Service support to families caring for a child with a sickle cell disorder or thalassaemia: the experience of health professionals,service managers and health commissioners
Until recently, health care policy has largely ignored sickle cell disorders (SCDs) and thalassaemia. This is despite the difficulties faced by service users and their families: the consequences of which range from denial of informed choice to avoidable suffering and stress. This article, by presenting material from a qualitative evaluation of service support to families caring for a child with a sickle cell disorder or thalassaemia, examines these problems in detail. We specifically focus on the accounts of health professionals, their managers and health commissioners, to explore treatment and support for children with a haemoglobinopathy. We conclude that ill-coordinated and poorly resourced haemoglobinopathy services represent major problems for users and their families. However, we also highlight examples of good practice; demonstrating that improvements can be made with clear planning, employment of appropriate and well-trained staff, good inter-agency working and user involvement.
Ahmad, W.I.U. and Atkin, K. (1996a). ‘ Race’ and community care. Buckingham: Open University Press .
2.
Ahmad, W.I.U. and Atkin, K. (1996b). Ethnicity and caring for a disabled child: The case of children and sickle cell or thalassaemia . British Journal of Social Work, 26, 755–775 .
3.
Ahmad, W.I.U. , Darr, A. , Jones, L. and Nisar, G. (1998). Ethnicity and deafness: A national overview. Bristol: Policy Press .
4.
Anionwu, E.N. (1993). Sickle cell and thalassaemia: Community experiences and official response. In W.I.U. Ahmad (Ed.), ‘Race’ and health in contemporary Britain. Buckingham: Open University Press .
5.
Anionwu, E.N. (1996a). Sickle cell and thalassaemia: Some priorities for nursing . Journal of Advanced Nursing, 23(5), 853–856 .
6.
Anionwu, E.N. (1996b). Ethnic origin of sickle cell and thalassaemia counsellors: Does it matter?. In D. Kelleher and S. Hillier (Eds.), Researching cultural differences in health. London: Routledge .
7.
Atkin, K. (1991). Health, illness, disability and black minorities: A speculative critique of present day discourse . Disability Handicap and Society, 6(1), 37–47 .
8.
Atkin, K. and Lunt, N. (1996). The role of the practice nurse in primary health care: managing and supervising the practice nurse resource . Journal of Nursing Management, 4, 85–92 .
9.
Atkin, K. and Rollings, J. (1993). Community care in a multi-racial Britain: A critical review of the literature. London: HMSO .
10.
Atkin, K. , Ahmad, W.I.U. and Anionwu, E. (1997). Evaluating service support to families caring for a child with a sickle cell disorder or thalassaemia. Final Report submitted to the NHS National Research & Development Programme for People with Physical and Complex Disabilities. Bradford University: Ethnicity and Social Policy Research Unit .
11.
Beratis,S. (1993). Psycho-social status in pre-adolescent children with beta thalassaemia . Journal of Psychosomatic Research, 37(3), 271-271
12.
Beresford, B. , Sloper, P. , Baldwin, S. and Newman, T. (1996). What works in services for families with a disabled child?Essex: Barnardo's .
13.
Black, J. and Laws, S. (1986). Living with sickle cell disease: An inquiry into the need for health and social service provision for sickle cell sufferers in Newham. London: Sickle Cell Society .
14.
Darr, A. (1990). The social implications of thalassaemia among Muslims of Pakistani origin in England: Family experience and service delivery. PhD thesis, University of London.
15.
Davies, S. , Modell, B. and Wonke, B. (1993). The haemoglobinopathies: Impact upon black and ethnic minority people. In A. Hopkins and V. Bahl (Eds.), Access to health care for people from black and ethnic minorities. London: Royal College of Physicians .
16.
Flynn, R. , Willams. G. and Pickard, S. (1996). Markets and networks: Contracting in community health services. Buckingham: Open University Press .
17.
Franklin, I. (1988). Services for sickle cell disease: Unified approach needed . British Medical Journal, 296, 592-592 .
18.
Glendinning, C. (1985). A single door. London: Allen and Unwin .
19.
Green, J. and France-Dawson, M. (1994). Women's experiences of screening in pregnancy: Ethnic differences in the West Midlands . Paper given at conference ‘Culture, Kinship and Genes’, 28–30March.
20.
Gubrium, J.F. and Silverman, D. (1989). The politics of field research: Sociology beyond enlightenment. London: Sage .
21.
Hill, S.A. (1994). Managing sickle cell disease in low income families. Philadelphia: Temple University Press .
22.
Lipsky, M. (1980). Street level bureaucracy: Dilemmas of the individual in public service. Russell Sage: New York .
23.
McNaught, A. (1986). Health action and ethnic minorities. London: Bedford Square Press .
24.
Merton, R.K. and Kendall, P.L. (1946). The focused interview . American Journal of Sociology, 51, 541–557 .
25.
Midence, K. and Elander, J. (1994). Sickle cell disease: A psychological approach. Oxford: Radcliff .
26.
Mishler, E.G. (1986). Research interviewing: Context and narrative. Cambridge: Harvard University Press .
27.
Modell, B. and Anionwu, E. (1996). Guidelines for screening for haemoglobin disorders: Service specification for low and high-prevalence District Health Authorities. In W.I.U. Ahmad , T. Sheldon and O. Stuart (Eds.), Reviews of ethnicity and health. York: NHS Centre for Reviews and Dissemination .
28.
Office of Public Management (1996). Responding to diversity: A study of commissioning issues and good practice in purchasing minority. London: Office of Public Management .
29.
Prashar, U. , Anionwu, E.N. and Brozovic, M. (1985). Sickle cell anaemia: Who cares?. London: Runnymede Trust .
30.
Shackle, D. and May, A. (1989). Knowledge and perceptions of haemoglobinopathy carrier screening among general practitioners in Cardiff . Journal of Medical Genetics, 26, 109–112 .
31.
Sickle Cell Society (1981). Sickle cell disease: The need for improved services. Leicester: Sickle Cell Society .
32.
SMAC (Standing Medical Advisory Committee) (1993). Report of working party on sickle cell, thalassaemia and other haemoglobinopathies (The SMAC Report). London: Department of Health .
33.
Smith, G. and Cantley, C. (1985). Assessing health care: A study in organisational evaluation. Buckingham: Open University Press .
34.
Stimmel, B. (1993). Pain analgesia and addiction. New York: Raven Press .
35.
Streetly A. , Dick, M. and Layton, M. (1993). Sickle cell disease: the case for coordinated information . British Medical Journal, 306, 1491–1492 .
36.
Twigg, J. (1997). Deconstructing the ‘social bath’: Help with bathing for older and disabled people . Journal of Social Policy26 (2), 211–232 .
37.
Twigg, J. and Atkin, K. (1994). Carers perceived: Policy and practice in informal care. Buckingham: Open University Press .
38.
Walker, R. and Ahmad, W.I.U. (1994). Windows of opportunity in rotting frames: Care providers' perspectives on community care and black communities . Critical Social Policy, 40, 46–68 .
