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Original Articles

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

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Pages 581-594 | Published online: 09 Oct 2007

References

  • Ahmad , W. I. U. 2000 . “ Introduction ” . In Ethnicity, disability and chronic illness Edited by: Ahmad , W. I. U. 1 – 11 . Buckingham , , UK : Open University Press), .
  • Ahmad , W. I. U. and 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 .
  • Ali , Z. , Fazil , Q. , Bywaters , P. , Wallace , L. and Singh , G. 2001 . Disability, ethnicity and childhood: a critical review of research . Disability and Society , 16 (7) : 949 – 967 .
  • Allison , A. C. 1954 . Protection afforded by sickle cell trait against subtertian malarial infection . British Medical Journal , 1 : 290 – 294 .
  • Anionwu , E. N. 1982 . Sickle cell disorders and the school child . Health Visitor , 65 (4) : 120 – 122 .
  • Anionwu , E. N. and Atkin , K. 2001 . The politics of sickle cell and thalassaemia , Buckingham , , UK : Open University Press .
  • Atkin , K. and Ahmad , W. I. U. 1998 . Genetic screening and haemoglobinopathies: ethics, politics and practice . Social Science and Medicine , 46 (3) : 445 – 458 .
  • Atkin , K. and Ahmad , W. I. U. 2000 . “ Living with sickle cell disorder: how young people negotiate their care and treatment ” . In Ethnicity, disability and chronic illness , Edited by: Ahmad , W. I. U. 45 – 66 . Buckingham , , UK : Open University Press .
  • Atkin , K. and 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 .
  • Atkin , K. and Hussain , Y . 2003 . “ Ethnicity, disability and young people ” . In Disability, culture and identity , Edited by: Watson , N. London : Pearson Education .
  • Barbarin , O. A. 1994 . “ Risk and resilience in adjustment to sickle cell disease: integrating focus groups, case reviews and quantitative methods ” . In Psychosocial aspects of sickle cell disease: past, present and future directions of research Edited by: Nash , K. B. 97 – 121 . New York : The Haworth Press), .
  • Barnes , C. , Mercer , G. and Shakespeare , T. 1999 . Exploring disability: a sociological introduction , Cambridge , , UK : Polity Press .
  • Barton , L . 1997 . “ The politics of special educational needs ” . In Disability studies: past, present and future Edited by: Barton , L. and Oliver , M. 138 – 159 . Leeds , , UK : The Disability Press), .
  • Black , J. and Laws , S. 1986 . Living with sickle cell disease , London : Sickle Cell Society .
  • Blackman , M. 1999 . Forbidden game , Harmondsworth , , UK : Penguin .
  • 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)
  • British Medical Association . 1998 . Human genetics: choice and responsibility , Oxford , , UK : Oxford University Press .
  • Bowman , J. E. 1977 . Genetic screening programmes and public policy . Phylon , 38 : 117 – 142 .
  • Collins , P. H. 2004 . Black sexual politics: African Americans, gender, and the new racism , London : Routledge .
  • Corker , E. M. and French , S. 1998 . Disability discourse , Buckingham , , UK : Open University Press .
  • Darr , A. , Darr , A. , Atkin , K. , Anionwu , E. N. , Lindsay , J. and 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 , Leeds , , UK : University of Leeds and Birmingham OSCAR . report to the Big Lottery Fund, Project nNo. URN: RG24031
  • Davis , M. and Troupe , Q. 1990 . Miles , New York : Simon & Schuster .
  • Department of Health . 1999 . Making a difference: strengthening the nursing, midwifery and health visiting contribution to health and healthcare , London : The Stationery Office .
  • Department of Health . 2004 . The NHS framework for children, young people and maternity services , London : The Stationery Office .
  • Draper , E. 1991 . Risky business: genetic testing and exclusionary practices in the hazardous workplace , Cambridge , , UK : Cambridge University Press .
  • Dyson , S. M. 1992 . “ Blood relations: educational implications of sickle‐cell anaemia and thalassaemia ” . In Curricula for diversity in education Edited by: Booth , T. , Swann , W. , Masterton , M. and Potts , P. 277 – 283 . London : Routledge), .
  • Figueroa , P. 2000 . “ Researching education and racialization: virtue or validity? ” . In Situated ethics in educational research , Edited by: Simons , H. and Usher , R. 82 – 100 . London : Routledge Falmer .
  • Fleming , S. 2001 . “ Racial science and South Asian and black physicality ” . In ‘Race’, sport and British society , Edited by: Carrington , B. and McDonald , I. London : Routledge .
  • Fryer , P. 1984 . Staying power: the history of black people in Britain , London : Pluto Press .
  • Fuggle , P. , Shand , P. A. X. , Gill , L. J. and Davies , S. C. 1996 . Pain, quality of life and coping in sickle cell disease . Archives of Disease in Childhood , 75 : 199 – 203 .
  • 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. and 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 .
  • Gil , K. M. , Porter , L. , Ready , J. , Workman , E. , Sedway , J. and 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 .
  • Hughes , W. and Paterson , K. 1997 . The social model of disability and the disappearing body: towards a sociology of impairment . Disability and Society , 12 (3) : 325 – 340 .
  • 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 .
  • Hylton , R. , ed. 2003 . Donald Rodney: doublethink , London : Autograph .
  • Inner London Education Authority . 1989 . Sickle cell disorders of the blood , London : Inner London Education Authority . Circular 89/99
  • Jackson , P. 1968 . Life in classrooms , New York , Holt : Rinehart & Winston .
  • Jay , M. 2003 . Critical race theory, multicultural education, and the hidden curriculum of hegemony . Multicultural Perspectives , 5 (4) : 3 – 9 .
  • Jones , C. and Shorter‐Gooden , K. 2003 . Shifting: the double lives of black women in America , New York : Harper Collins .
  • Katz , M. L. , Smith‐Whitley , K. , Ruzek , S. B. and 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 .
  • King , A. A. , Tang , S. , Ferguson , K. L. and DeBaun , M. R. 2005 . An education program to increase teacher knowledge about sickle cell disease . Journal of School Health , 75 (1) : 11 – 14 .
  • Konotey‐Ahulu , F. I. D. 1991 . The sickle cell disease patient , London : Macmillan .
  • Koontz , K. , Short , A. D. , Kalinyak , K. and 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 .
  • Laurence , B. , Reid , B. C. and Katz , R. V. 2002 . Sickle cell anaemia and dental caries: a literature review and pilot study . Special Care in Dentistry , 22 (2) : 70 – 4 .
  • Midence , K. and Elander , J. 1994 . Sickle cell disease: a psychological approach , Oxford , , UK : Radcliffe Medical Press .
  • National Institutes of Health . 2002 . The management of sickle cell disease , (4th edn) , Bethesda , MD : NIH . Publication 02–2117
  • Nettles , A. L. 1994 . “ Scholastic performance of children with sickle cell disease ” . In Psychosocial aspects of sickle cell disease Edited by: Nash , K. B. 123 – 140 . New York : The Haworth Press), .
  • NHS Sickle Cell and Thalassaemia Screening Programme for England . 2006 . Screening policies Available online at: www.sickleandthal.org.uk (accessed 20 October 2006)
  • Noll , R. B. , Ris , M. D. , Davies , W. H. , Bukowski , W. M. and 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 .
  • Noll , R. B. , Vannatta , K. , Koontz , K. , Kalinyak , K. , Bukowski , W. M. and Davies , W. H. 1996 . Peer relationships and emotional well‐being of youngsters with sickle cell disease . Child Development , 67 : 423 – 436 .
  • Okpala , I. 2004 . Practical management of haemoglobinopathies , Oxford , , UK : Blackwell .
  • Oliver , M. 1990 . The politics of disablement , London : Macmillan .
  • Oshodi , M. 1989 . “ Blood, sweat and fears ” . In Black plays: 2 Edited by: Brewster , Y. 93 – 142 . London : Methuen), .
  • Reverby , S. M. , ed. 2000 . Tuskegee’s truths: rethinking the Tuskegee syphilis study , Chapel Hill , NC : University of North Carolina Press .
  • Rutter , M. , Maughan , B. , Mortimore , P. and Ousten , J. 1979 . Fifteen thousand hours: secondary schools and their effects on children , London : Open Books .
  • Savundra , P. A. 1996 . Audio‐vestibular dysfunction in the sickle cell syndromes . Journal of Audiological Medicine , 5 (3) : 167 – 173 .
  • Schatz , J. 2004 . Academic attainment in children with sickle cell disease . Journal of Pediatric Pyschology , 29 (8) : 627 – 633 .
  • Schatz , J. , Brown , R. T. , Lambert , R. , Hsu , L. and DeBaun , M. R. 2001 . Poor school and cognitive functioning with sickle cell disease and silent cerebral infarcts . Neurology , 56 (8) : 1109 – 1111 .
  • Serjeant , G. R. and Serjeant , B. E. 2001 . Sickle cell disease , (3rd edn) , Oxford , , UK : Oxford University Press .
  • Shakespeare , T. 1995 . Back to the future? New genetics and disabled people . Critical Social Policy , 15 (2/3) : 22 – 25 .
  • Shakespeare , T. 1999 . Losing the plot, medical and activist discourses of contemporary genetics and disability . Sociology of Health and Illness , 21 (5) : 669 – 688 .
  • Shapiro , B. S. , Dinges , D. F. , Orne , E. C. , Bauer , N. , Reilly , L. B. , Whitehouse , W. G. , Ohene‐Frempong , K. and 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 .
  • Sickle Cell Society . 2006 . Teaching resource Available online at: www.sicklecellsociety.org/education/teachres.htm (accessed 1 February 2006)
  • Stamatoyannopoulos , G. 1974 . “ Problems of screening and counselling in the haemoglobinopathies ” . In Birth defects , Edited by: Motulsky , A. G. and Lenz , W. Amsterdam : Excerpta Medica .
  • Swain , J. , Finkelstein , V. , French , S. and Oliver , M. 2004 . Disabling barriers: enabling environments , London : Sage .
  • Tapper , M. 1999 . In the blood: sickle cell anemia and the politics of race , Philadelphia , PA : University of Pennsylvania Press .
  • Telfair , J. 1994 . “ Factors in the long‐term adjustment of children and adolescents with sickle cell disease: conceptualizations and review of the literature ” . In Psychosocial aspects of sickle cell disease , Edited by: Nash , K. B. 69 – 96 . New York : The Haworth Press .
  • Thomas , V. J. and 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 .
  • 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 .
  • World Health Organisation . 1988 . The haemoglobinopathies in Europe: combined report of two WHO meetings , Copenhagen : WHO Regional Office for Europe . Document EUR/ICP/MCH 110
  • Zeuner , D. , Ades , A. E. , Karnon , J. , Brown , J. , Dezateux , C. and Anionwu , E. N. 1999 . Antenatal and neonatal haemoglobinopathy screening in the UK: review and economic analysis . Health Technology Assessment , 3 (11) : 1 – 177 .

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