Genetic counselling: A Consideration of the potential and key obstacles to assisting parents adapt to a child with learning disabilities

British Journal of Learning Disabilities

Volumn 27, Issue 1, 1999, Pages 30-36

  Barr, Owen ^a  

^a UNIVERSITY OF ULSTER   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 0001943253     PISSN: 13544187     EISSN: 14683156     Source Type: Journal    
DOI: 10.1111/j.1468-3156.1999.tb00080.x     Document Type: Article

References (51)

1. Barr, O. (1997) Interventions in a family context. In B. Gates (ed.) Learning Disabilities: A Handbook of Care (3rd edn) (pp 275-96). Edinburgh: Churchill Livingstone.
2. Bell, J. (1998) The new genetics in clinical practice. British Medical Journal 316, 618-20.
3. Bishop, J.E. and Waldholz, M. (1991) Genome. New York: Touchstone Books.
4. Brown, H. and Smith, H. (eds) (1992) Normalisation: A Reader for the 1990s. London: Routledge.
5. Brown, J, Kitson, A. and McKnight, T. (1992) Challenges to Caring. London: Chapman and Hall.
6. Carpenter, B. (1997) (ed.) Families in Context. Emerging Trends in Family Support and Early Intervention. London: David Fulton Publishers.
7. Chappie, A. and May, C. (1996) Genetic knowledge and family relationships: Two case studies. Health and Social Care in the Community 4 (3), 166-71.
8. Chappie, A., May, C. and Campion, P. (1995) Lay understanding of genetic disease: A British study of families attending a Genetic Counselling Service. Journal of Genetic Counselling 4 (4), 281-300.
9. Clausen, H., Brandt, N., Schwartz, M. and Skovby, F. (1996) Psychological and social impact of carrier screening for cystic fibrosis among pregnant women: A pilot study. Clinical Genetics 49, 200-5.
10. Dale, N. (1996) Working with Families of Children of Special Needs. Partnership and Practice. London: Routledge.
11. Davis, H. (1993) Counselling Parents of Children with Chronic Illness or Disability. London: British Psychological Society Books.
12. DHSS (1995) A Review of Policy fo r People with a Learning Disability. Belfast: HMSO.
13. Emerson, E. and Hatton, C. (1996) Provocation's from the 'New Genetics'. Tizard Learning Disability Review 1 (3), 31-3.
14. Fraser, F. C. (1974) Genetic counselling. American Journal of Human Genetics 26, 636-59.
15. Gath, A. (1985) Parental reactions to loss and disappointment: The diagnosis of Down's syndrome. Developmental Medicine and Child Neurology 27, 392-400.
16. Grant, G., Ramcharan, P., McGrath, M., Nolan, M. and Keady, J. (1998) Rewards and gratifications among family caregivers: Towards a refined model of caring and coping. Journal of Intellectual Disability Research 42 (1), 58-71.
17. Grantham, J. J. (1995) Ethical issues and genetic counselling. Contributions to Nephrology 115 (1), 39-43.
18. Green, J. and Statham, H. (1996) Psychosocial aspects of prenatal screening and diagnosis. In T. Marteau and M. Richards (eds) The Troubled Helix: Social and Psychological Implications of the New Human Genetics (pp 140-59). Cambridge: Cambridge University Press.
19. Hannam, C. (1988) Parents and Mentally Handicapped Children . (3rd edn). Bristol: Classical Press.
20. Harper, P. S. (1988) Practical Genetic Counselling (3rd edn). London: Wright
21. Hentinen, M. and Kyngas, H. (1998) Factors associated with the adaptation of parents with a chronically ill child. Journal of Clinical Nnrsing 7, 316-24.
22. Herbert, E. and Carpenter, B. (1994) Fathers-the secondary partners: Professional's perceptions and father's reflections. Children & Society 8 (1), 31-41.
23. Holloway, S., Meenie, M., Crosbie, A. et al. (1994) Predictive testing for Huntington disease: Social characteristics and knowledge of applicants, attitudes to the test procedure and decisions made after testing. Clinical Genetics 46, 175-80.
24. Hornby, G. (1994) Counselling in Child Disability. Skills for Working with Parents. London: Chapman and Hall.
25. Kessler, S. (1992) Process issues in genetic counselling. Birth defects. Original Articles Series 38 (1), 1-10.
26. Khalid, L., Price, S. M. and Barrow, M. (1994) The attitudes of midwives to maternal serum screening for Down's syndrome. Public Health 108, 131-36.
27. Leavitt, F. J. (1996) Educating nurses for their future role in bioethics. Nursing Ethics 3 (1), 39-52.
28. Leonard, A. (1994) Right from the Start. Looking at Disclosure and Diagnosis. London: Scope.
29. Madden, P. (1994) Why parents: How parents. British Journal of Learning Disabilities 23 (2), 90-3.
30. Manthorpe, J. (1995) Services to families. In N. Malin (ed.) Services for People with Learning Disabilities (pp. 111-24). London: Routledge.
31. Marteau, T. M. (1993) Psychological consequences of screening for Down's syndrome. British Medical Journal 307, 146-7.
32. Maxwell, V. (1993) Look through the parents' eyes. Helping parents of children with a disability. Professional Nurse 9 (3), 200-3.
33. McCormack, M. (1992) Special Children, Special Needs. Families Talk about Living with Mental Handicap. London: Thorsons.
34. Michie, S., Axworthy, D., Weinman, J. and Marteau, T. (1996) Genetic counselling: Predicting patient outcomes. Psychology and Health 11, 797-807.
35. Miller, N. B., Burmester, S., Callahan, D. G., Dieterle, J. and Niedermeyer, S. (1994) Nobody's Perfect. Baltimore: Paul Brookes Publishers.
36. Morritt, J., Waterson, T. and Magnay, D. (1996) Access to current genetic investigations for children with special educational needs. British Journal of Learning Disabilities 24 (2), 164-6.
37. Mueller, R. F. and Young, I. D. (1995) Emery's Elements of Medical Genetics (9th edn). Edinburgh: Churchill Livingstone.
38. Pembury, M. (1996) The new genetics. A user's guide. In T. Marteau and M. Richards M. The Troubled Helix: Social and Psychological Implications of the New Human Genetics (pp. 63-81). Cambridge: Cambridge University Press.
39. Phan, T. T. (1994) Diagnostic assessment of developmental disability: The parents' view. Journal of Clinical Nursing 3 (2), 147-53.
40. Powell, T. and Gallagher, P. (1993) Brothers and Sisters. A Special Part of Exceptional Families (2nd edn). Baltimore: Paul Brookes Publishers.
41. Quaid, K. A. and Morris, M. (1993) Reluctance to undergo predictive testing: The case of Huntington disease. Clinical Genetics 36, 431-8.
42. Rendali, D. (1997) Fatherhood and learning disabilities. Journal of Learning Disabilities-Nursing, Health and Social Care 1 (2), 77-83.
43. Richards, M. P. M. (1993) The new genetics: Some issues for social scientists. Sociology of Health and Illness 15 (5), 565-86.
44. Shiloh, S., Reznik, H., Bat-Miriam-Katznelson, M. et al. (1995) Pre marital genetic counselling to consanguineous couples: Attitudes, beliefs and decisions among counselled, noncounselled and unrelated couples in Israel. Social Science Medicine 41 (9), 1301-10.
45. Statham, H. and Green, J. (1993) Serum screening for Down's syndrome: Some women's experiences. British Medical Journal 307, 174-6.
46. Steele, J. (1993) Prenatal diagnosis and Down syndrome: Part 2. Possible effects. Mental Handicap Research 6 (1), 56-69.
47. Tozer, R. (1996) Brothers, Sisters and Learning Disability. A Guide for Parents. Kidderminster: British Institute of Learning Disabilities Publications.
48. Vagg, J. (1998) A lifetime of caring. In T. Thompson and P. Mathias (eds) Standards and Learning Disabilities(2nd edn) (pp 276-86). London: Bailliere Tindall.
49. Wertz, D. C. (1992) Ethical and legal implications of the new genetics: Issues for discussion. Social Science Medicine 35, 495-505.
50. Wide, M. (1996) A Partnership in Caring. A Guide for Professionals Who Work with Families that Support a Person with a Learning Disability. Sheffield: United Response. Williams, P. (1995) Should we prevent Down's syndrome? British Journal of Learning Disabilities 23 (1), 46-50.
51. Williams, P. (1995) Should we prevent Down's syndrome? British Journal of Learning Disabilities 23 (1), 46-50.