The educational experiences of young people with sickle cell disorder: A commentary on the existing literature

Disability and Society

Volumn 22, Issue 6, 2007, Pages 581-594

  Dyson, Simon M ^a   Atkin, Karl ^b   Culley, Lorraine A ^a   Dyson, Sue E ^a  

^a DE MONTFORT UNIVERSITY   (United Kingdom)

^b UNIVERSITY OF YORK   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 35148838431     PISSN: 09687599     EISSN: 13600508     Source Type: Journal    
DOI: 10.1080/09687590701560196     Document Type: Review

References (71)

1. Ahmad, W. I. U. (2000) Introduction, in: W. I. U. Ahmad (Ed.) Ethnicity, disability and chronic illness (Buckingham, UK, Open University Press), 1-11.
2. Ahmad, W. I. U. & Atkin, K. (1996) Ethnicity and caring for a disabled child: the case of sickle cell or thalassaemia, British Journal of Social Work, 26, 755-775.
3. Ali, Z., Fazil, Q., Bywaters, P., Wallace, L. & Singh, G. (2001) Disability, ethnicity and childhood: a critical review of research, Disability and Society, 16(7), 949-967.
4. Allison, A. C. (1954) Protection afforded by sickle cell trait against subtertian malarial infection, British Medical Journal, 1, 290-294.
5. Anionwu, E. N. (1982) Sickle cell disorders and the school child, Health Visitor, 65(4), 120-122.
6. Anionwu, E. N. & Atkin, K. (2001) The politics of sickle cell and thalassaemia (Buckingham, UK, Open University Press).
7. Atkin, K. & Ahmad, W. I. U. (1998) Genetic screening and haemoglobinopathies: ethics, politics and practice, Social Science and Medicine, 46(3), 445-458.
8. Atkin, K. & Ahmad, W. I. U. (2000) Living with sickle cell disorder: how young people negotiate their care and treatment, in: W. I. U. Ahmad (Ed.) Ethnicity, disability and chronic illness (Buckingham, UK, Open University Press), 45-66.
9. Atkin, K. & Ahmad, W. I. U. (2001) Living a 'normal' life: young people coping with thalassaemia major or sickle cell disorder, Social Science and Medicine, 53(5), 615-626.
10. Atkin, K. & Hussain, Y. (2003) Ethnicity, disability and young people, in: N. Watson (Ed.) Disability, culture and identity (London, Pearson Education).
11. Barbarin, O. A. (1994) Risk and resilience in adjustment to sickle cell disease: integrating focus groups, case reviews and quantitative methods, in: K. B. Nash (Ed.) Psychosocial aspects of sickle cell disease: past, present and future directions of research (New York, The Haworth Press), 97-121.
12. Barnes, C., Mercer, G. & Shakespeare, T. (1999) Exploring disability: a sociological introduction (Cambridge, UK, Polity Press).
13. Barton, L (1997) The politics of special educational needs, in: L. Barton & M. Oliver (Eds) Disability studies: past, present and future (Leeds, UK, The Disability Press), 138-159.
14. Black, J. & Laws, S. (1986) Living with sickle cell disease (London, Sickle Cell Society).
15. Blackman, M. (1999) Forbidden game (Harmondsworth, UK, Penguin).
16. British Broadcasting Corporation (BBC) (2005) Sickle cell awareness day: Patrick's story. Available online at: www.bbc.co.uk/health/ awareness_campaigns/storiesawareness_sicklecell.shtml (accessed 6 March 2006).
17. British Medical Association (1998) Human genetics: choice and responsibility (Oxford, UK, Oxford University Press).
18. Bowman, J. E. (1977) Genetic screening programmes and public policy, Phylon, 38, 117-142.
19. Collins, P. H. (2004) Black sexual politics: African Americans, gender, and the new racism (London, Routledge).
20. Corker, E. M. & French S. (1998) Disability discourse (Buckingham, UK, Open University Press).
21. Darr, A., Darr, A., Atkin, K., Anionwu, E. N., Lindsay, J. & Thompson, J. (2005) Chronic illness, ethnicity and young people: how those with a sickle cell and thalassaemia disorder negotiate the life transitions associated with growing up, report to the Big Lottery Fund, Project nNo. URN: RG24031 (Leeds, UK, University of Leeds and Birmingham OSCAR).
22. Davis, M. with Troupe, Q. (1990) Miles (New York, Simon & Schuster).
23. Department of Health (1999) Making a difference: strengthening the nursing, midwifery and health visiting contribution to health and healthcare (London, The Stationery Office).
24. Department of Health (2004) The NHS framework for children, young people and maternity services (London, The Stationery Office).
25. Draper, E. (1991) Risky business: genetic testing and exclusionary practices in the hazardous workplace (Cambridge, UK, Cambridge University Press).
26. Dyson, S. M. (1992) Blood relations: educational implications of sickle-cell anaemia and thalassaemia, in: T. Booth, W. Swann, M. Masterton & P. Potts (Eds) Curricula for diversity in education (London, Routledge), 277-283.
27. Figueroa, P. (2000) Researching education and racialization: virtue or validity? in: H. Simons & R. Usher (Eds) Situated ethics in educational research (London, Routledge Falmer), 82-100.
28. Fleming, S. (2001) Racial science and South Asian and black physicality, in: B. Carrington & I. McDonald (Eds) 'Race', sport and British society (London, Routledge).
29. Fryer, P. (1984) Staying power: the history of black people in Britain (London, Pluto Press).
30. Fuggle, P., Shand, P. A. X., Gill, L. J. & Davies, S. C. (1996) Pain, quality of life and coping in sickle cell disease, Archives of Disease in Childhood, 75, 199-203.
31. Gaston, M. H., Verter, J. I., Woods, G., Pegelow, C., Kelleher, J., Presbury, G., Zarkowsky, H., Vichinsky, E., Iyer, R., Lobel, J. S., Diamond, S., Holbrook, T., Gill, F. M., Ritchey, K., & Falletta, J. M. (1986) Prophylaxis with oral penicillin in children with sickle cell anemia: a randomized trial, New England Journal of Medicine, 314, 1593-1599
32. Gil, K. M., Porter, L., Ready, J., Workman, E., Sedway, J. & Anthony, K. K. (2000) Pain in children and adolescents with sickle cell disease: an analysis of daily pain diaries, Children's Health Care, 29(4), 225-241.
33. Hughes, W. & Paterson, K. (1997) The social model of disability and the disappearing body: towards a sociology of impairment, Disability and Society, 12(3), 325-340.
34. Hughes, W. (2002) Bauman's strangers: impairment and the invalidation of disabled people in modern and post-modern cultures, Disability and Society, 17(5), 571-584.
35. Hylton, R. (Ed.) (2003) Donald Rodney: doublethink (London, Autograph). Inner London
36. Education Authority (1989) Sickle cell disorders of the blood, Circular 89/99 (London, Inner London Education Authority).
37. Jackson, P. (1968) Life in classrooms. (New York, Holt, Rinehart & Winston).
38. Jay, M. (2003) Critical race theory, multicultural education, and the hidden curriculum of hegemony, Multicultural Perspectives, 5(4), 3-9.
39. Jones, C. & Shorter-Gooden, K. (2003) Shifting: the double lives of black women in America (New York, Harper Collins).
40. Katz, M. L., Smith-Whitley, K., Ruzek, S. B. & Ohene-Frempong, K. (2002) Knowledge of stroke risk, signs of stroke, and the need for stroke education among children with sickle cell disease and their caregivers, Ethnicity and Health, 7(2), 115-123.
41. King, A. A., Tang, S., Ferguson, K. L. & DeBaun, M. R. (2005) An education program to increase teacher knowledge about sickle cell disease, Journal of School Health, 75(1), 11-14.
42. Konotey-Ahulu, F. I. D. (1991) The sickle cell disease patient (London, Macmillan).
43. Koontz, K., Short, A. D., Kalinyak, K. & Noll, R. B. (2004) A randomized controlled pilot trial of a school intervention for children with sickle cell anaemia, Journal of Paediatric Psychology, 29(1), 7-17.
44. Laurence, B., Reid, B. C. & Katz, R. V. (2002) Sickle cell anaemia and dental caries: a literature review and pilot study, Special Care in Dentistry, 22(2), 70-4.
45. Midence, K. & Elander, J. (1994) Sickle cell disease: a psychological approach (Oxford, UK, Radcliffe Medical Press).
46. National Institutes of Health (2002) The management of sickle cell disease, Publication 02-2117 (4th edn) (Bethesda, MD, NIH).
47. Nettles, A. L. (1994) Scholastic performance of children with sickle cell disease, in: K. B. Nash (Ed.) Psychosocial aspects of sickle cell disease (New York, The Haworth Press), 123-140.
48. NHS Sickle Cell and Thalassaemia Screening Programme for England (2006) Screening policies. Available online at: www.sickleandthal.org.uk (accessed 20 October 2006).
49. Noll, R. B., Ris, M. D., Davies, W. H., Bukowski, W. M. & Koontz, K. (1992) Social interactions between children with cancer or sickle cell disease and their peers: teacher ratings, Journal of Developmental and Behavioural Pediatrics, 13, 187-192.
50. Noll, R. B., Vannatta, K., Koontz, K., Kalinyak, K., Bukowski, W. M. & Davies, W. H. (1996) Peer relationships and emotional well-being of youngsters with sickle cell disease, Child Development, 67, 423-436.
51. Okpala, I. (2004) Practical management of haemoglobinopathies (Oxford, UK, Blackwell).
52. Oliver, M. (1990) The politics of disablement (London, Macmillan)
53. Oshodi, M. (1989) Blood, sweat and fears, in: Y. Brewster (Ed.) Black plays: 2 (London, Methuen), 93-142.
54. Reverby, S. M. (2000) (Ed) Tuskegee's truths: rethinking the Tuskegee syphilis study (Chapel Hill, NC, University of North Carolina Press).
55. Rutter, M., Maughan, B., Mortimore, P. & Ousten, J. (1979) Fifteen thousand hours: secondary schools and their effects on children (London, Open Books).
56. Savundra, P. A. (1996) Audio-vestibular dysfunction in the sickle cell syndromes, Journal of Audiobgical Medicine, 5(3), 167-173.
57. Schatz, J. (2004) Academic attainment in children with sickle cell disease, Journal of Pediatric Pyschology, 29(8), 627-633.
58. Schatz, J., Brown, R. T., Lambert, R., Hsu, L. & DeBaun, M. R. (2001) Poor school and cognitive functioning with sickle cell disease and silent cerebral infarcts, Neurology, 56(8), 1109-1111.
59. Serjeant, G. R. & Serjeant, B. E. (2001) Sickle cell disease (3rd edn) (Oxford, UK, Oxford University Press).
60. Shakespeare, T. (1995) Back to the future? New genetics and disabled people, Critical Social Policy, 15(2/3), 22-25.
61. Shakespeare, T. (1999) Losing the plot, medical and activist discourses of contemporary genetics and disability, Sociology of Health and Illness, 21(5), 669-688.
62. Shapiro, B. S., Dinges, D. F., Orne, E. C., Bauer, N., Rally, L. B., Whitehouse, W. G., Ohene-Frempong, K. & Orne, M. T. (1995) Home management of sickle cell-related pain in children and adolescents: natural history and impact on school attendance, Pain, 61, 139-144.
63. Sickle Cell Society (2006) Teaching resource. Available online at: www.sicklecellsociety.org/education/teachres.htm (accessed 1 February 2006)
64. Stamatoyannopoulos, G. (1974) Problems of screening and counselling in the haemoglobinopathies, in: A. G. Motulsky & W. Lenz (Eds) Birth defects (Amsterdam, Excerpta Medica).
65. Swain, J., Finkelstein, V., French, S. & Oliver, M. (2004). Disabling harriers: enabling environments (London, Sage)
66. Tapper, M. (1999) In the blood: sickle cellanemia and the politics of race (Philadelphia, PA, University of Pennsylvania Press).
67. Telfair, J. (1994) Factors in the long-term adjustment of children and adolescents with sickle cell disease: conceptualizations and review of the literature, in: K. B. Nash (Ed.) Psychosocial aspects of sickle cell disease (New York, The Haworth Press), 69-96.
68. Thomas, V. J. & Taylor, L. M. (2002) The psychosocial experience of people with sickle cell disease and its impact on quality of life: qualitative findings from focus groups, British Journal of Health Psychology, 7(3), 345-363.
69. Wailoo, K. (2001) Dying in the city of the blues: sickle cell anaemia and the politics of race and health (Chapel Hill, NC, University of North Carolina Press).
70. World Health Organisation (1988) The haemoglobinopathies in Europe: combined report of two WHO meetings, Document EUR/ICP/MCH 110 (Copenhagen, WHO Regional Office for Europe)
71. Zeuner, D., Ades, A. E., Karnon, J., Brown, J., Dezateux, C. & Anionwu, E. N. (1999) Antenatal and neonatal haemoglobinopathy screening in the UK: review and economic analysis, Health Technobgy Assessment, 3(11), 1-177.