1. Anie K, Smalling B, Fotopoulos C (2000) Group work:
Children and adolescents with sickle cell. Community Practitioner
73 (4): 556 - 558
2. Anionwu E N (2000) Review: Patient perceptions of crisis
pain management in sickle cell disease: a cross cultural study. Nursing
Times Research 5 (3): 214
3. Anionwu E N, Atkin K (2001) The Politics of Sickle
Cell and Thalassaemia UK: Open University Press
4. Arya R, Bellingham A (1994) Sickle Cell Disease and
Surgery. Care of the Critically Ill 10 (2): 8487
5. Avila P (2000) Acute Chest Syndrome in Sickle Cell
Disease. The New England Journal of Medicine 343 (18):
1336 - 1337
6. Ballas S K, (2000) Hydration of sickle erythrocytes using
a herbal extract (pfaffia paniculata) in vitro. British Journal of
Haematology 111: 359 - 362
7. Ballas S.K (1990) Treatment of Pain in Adults with Sickle
Cell Disease. American Journal of Haematology 34: 49 -
54
8. Ballas S K (1998) Sickle Cell Pain USA:
International Association for the Study of Pain
9. Bain B J (2001) Haemoglobinopathy Diagnosis
London: Blackwell Science Ltd
10. Beris P, Darbellay R, Extermann P (1995) Prevention of
B-Thalassaemia Major and Hb Bart's Hydrops Fetalis Syndrome Seminars
in Haematology 32 (4): 224 - 261
11. Bloom M (1995) Understanding Sickle Cell Disease
University Press of Mississippi
12. Burghardt - Fitzpatrick G et al (1989) Pain behaviour
contracts: Effective management of the adolescent in sickle cell crisis
Journal of Paediatric Nursing 4 (5): 320 - 324
13. Cain J, Hammes B (1994) Ethics and Pain Management:
respecting Patient Wishes Journal Of Pain and Symptom Management
9 (3): 160 -165, APRIL
14. Chami B, Braconnier F, Riou J et al (1995) Geographical
distribution of 119 alleles of the a and b globin genes detected in 432
French Caucasian carriers of haemoglobin variant Annales de
Genetique 38 (4): 206 - 216
15. Charache S, Terrin M, Moore R D et al (1995) Effect of
Hydroxyurea on the frequency of painful crises in sickle cell anaemia
The New England Journal of Medicine 332 (20): 1317 -
1322
16. Clubb R (1993) Chronic Sorrow - Adaptation Patterns of
Parents with Chronically Ill Children, Paediatric Nursing
17 (5): 461 - 466 17. Canam C (1993) Common Adaptive Tasks
facing Parents of Children with Chronic Conditions, Journal of
Advanced Nursing, 18: 46 - 53
18. Davies S C, Roberts-Harewood M (1997) Blood transfusion
in sickle cell disease Blood Reviews 11: 57 - 71
19. Davies S C, Oni L (1997) Management of patients with
sickle cell disease BMJ 315:656- 660
20. Davies S C, Cronin E, Gill M, Greengross P, Hickman M,
Normand C. (2000) Screening for sickle cell disease and
thalassaemia: a systematic review with supplementary research Health
Technol Assess 4(3) (Can be downloaded from website
http://www.hta.nhsweb.nhs.uk )
21. Davies S C, Oni L (2001) Sickle cell Disease screening
programs - Integration into managed care. Dis Manage Health Outcomes
9(6): 296 - 304
22. Department of Health (1993) Report of a working
party of the Standing Medical Advisory Committee on Sickle Cell,
Thalassaemia and other Haemoglobinopathies London: HMSO
23.Embury S H., Hebbel R P., Mohandas N., Steinberg M H
(1994) Sickle Cell Disease - Basic Principles and Clinical Practice
New York: Raven Press
24. Emery J, Hayflick S (2001) The challenge of integrating
genetic medicine into primary care British Medical Journal 322:
1027- 1030
25. Falleta J, Woods G, Verter J (1995) Discontinuing
penicillin prophylaxis in children with sickle cell anaemia The
Journal of Pediatrics 127 (5): 685 - 690
26. Ghould D, Thomas V, Darlinson M (2000) The role of the
haemoglobinopathy nurse counsellor: an exploratory study Journal of
Advanced Nursing 31(1): 157 - 164
27. Gil K, Thompson R Keith B et al (1993) Sickle Cell
Disease in Children and adolescents: Change in Pain Frequency and Coping
Strategies over Time. Journal of Paediatric Psychology 18
(5): 621 - 637
28. Gill F M, Sleeper L, Weiner S J et al (1995) Clinical
Events in the First Decade in a cohort of Infants with Sickle cell
Disease 86 (2): 776 - 783
29. Higgs D, Weatherall D J (1993) Bailliere's Clinical
Haematology International Practice and Research - The
Haemoglobinopathies London: Bailliere Tindall
30. Howard R, Lillis C, Tuck S (1993) Contraceptive,
Counselling and Pregnancy in Women with Sickle Cell Disease BMJ 306:
1735 - 1737
31. Human Genetics Commission (2000) Whose Hands on Your
Genes? UK: Department of Health
32. Hurtig A et al (1986) Psychosocial adjustment in
Children and Adolescents with Sickle Cell Disease British Medical
Journal 306: 1735 - 1737
33. Lorenzi E A (1993) The effects of comprehensive
guidelines for the care of patients in crisis on the nurses' knowledge
base and job satisfaction for care given Journal of Advanced Nursing
18: 1923 - 1930
34. Marteau T M, Lerman C (2001) Genetic risk and
behavioural change British Medical Journal 322: 1056 -
1059
35. Maxwell K, Streetly A, Oni L (1997) Fair shares for
London. Modern Midwife 7(11):15-19
36. Maxwell K, Streetly A (1998) Living with Sickle Pain
London: Guy's and St Thomas School of Medicine
37. Midence K, Elander J (1993) Sickle Cell Disease - A
Psychosocial Approach UK: Radcliffe Medical Press
38. Modell, B. Petrou M, Layton M et al (1997) Audit of
prenatal diagnosis for haemoglobin disorders in the United Kingdom: the
first 20 years BMJ 315: 779-784
39. Nwezi E (2001) Malevolent Ogbanje: recurrent
reincarnation or sickle cell disease? Social Science & Medicine
52(9): 1403 - 1416
40. Ohnishi S T, Ohnishi T, Ogunmola G B (2000) Sickle Cell
Anaemia: A potential nutritional approach for a molecular disease
Nutrition 16:330-338
41. Olivieri N F, Brittenham G M, Matsui D et al (1995) Iron
Chelation Therapy with Oral Deferiprone in Patients with Thalassaemia
Major The New England Journal of Medicine 332 (14): 918
- 922
42. Oni L, Dick M, Smalling B, Walters J (1997) Care and
management of your child with sickle cell disease - A parents' guide
London: Brent Sickle Cell and Thalassaemia Centre
43. Oni L (1998) Sickle Cell Disease and the Carer - Client
Relationship Nursing Times 94 (26): 65 - 67
44. Oni L, Bent S (1998) Sickle Cell Disease Nursing
Times Systems & Diseases 94 (37): 50-54
45. Oni L, Brown M, Rochester-Peart C (in press) Care
and Management of People with Sickle Cell, Thalassaemia and Related
Conditions UK: Butterworth-Heinemann
46. Platt O S (2000) The acute chest syndrome of sickle cell
disease New England Journal of Medicine 342
(25):1904-1907
47. Powars D R (2000) Management of cerebral vasculopathy in
children with sickle cell anaemia British Journal of Haematology
108:666 - 678
48. Scheter N L, Berde C B, Yaster M (Editors) (1993) Pain
in Infants, Children and Adolescents London: Williams and Wilkins
49. Serjeant G (2001) 3rd Edition Sickle Cell Disease
Oxford: Oxford University Press
50. Smith-Wynter L (2000) Patient perceptions of crisis pain
management in sickle cell disease: a cross cultural study Nursing
Times Research 5 (3) : 204 - 213
51. US Department of Health and Human Sciences ((1993) Sickle
Cell Disease: Comprehensive Screening and Management in New-borns and
Infants USA: Agency for Health Care Policy and Research
52. Valler A H (1994) Street addicts and patients with pain:
Similarities and differences Clinical Nurse Specialists 8
(1): 11 - 15
53. Vichinsky E P, Lynne E D N, Eearles A N, et al (2000)
Causes and outcomes of the acute chest syndrome in sickle cell disease
The New England Journal of Medicine 342 (25): 1855-1865
54. Walding M (1991) Pain, Anxiety and Powerlessness, Journal
of Advanced Nursing, 16: 338-397
55. Ware M A, Hambleton I, Ochaya, Serjeant G (1999) Day
-care management of sickle cell painful crisis in Jamaica: a model
applicable elsewhere British Journal of Haematology 104:
93 - 96
56. Weatherall D J (1997) The Hereditary Anaemias British
Medical Journal 314: 492 - 496
57. Weatherall D J, Clegg J B (2001) The Thalassaemia
Syndromes London: Blackwell Science Limited
58. World Health Organisation (1994) Guidelines for the
Control of Haemoglobin Disorders UK: WHO
59. Young R, Rachal R et al (1992) Smoking is a Factor in
causing Acute Chest Syndrome in Sickle Cell Anaemia Journal Of the
National Medical Association 84 (3): 267 -271
60. Zeuner D, Ades AE, Karnon J, Brown J, Dezateux C,
Anionwu E N Antenatal and neonatal haemoglobinopathy screening in
the UK: review and economic analysis Health Technol Assess 1999:3
(11) (Can be downloaded from website http://www.hta.nhsweb.nhs.uk )
COMPILED BY: LOLA ONI,
NURSE DIRECTOR / LECTURER,
BRENT SICKLE CELL & THALASSAEMIA CENTRE,
122 HIGH STREET,
HARLESDEN,
LONDON NW10 4SP
TEL: 020 8961 9005
© (1998, updated 2001)
NOT TO BE REPRODUCED WITHOUT AUTHORISATION
