Parents of Children with Intellectual Disabilities: Their Expectations and Experience of Genetic Counselling

Journal of Applied Research in Intellectual Disabilities

Volumn 16, Issue 3, 2003, Pages 189-204

  Barr, Owen ^a   Millar, Rob ^a  

^a UNIVERSITY OF ULSTER   (United Kingdom)

Author keywords

Adaptation; Diagnosis; Genetics; Parents

Indexed keywords

EID: 1842483083     PISSN: 13602322     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1468-3148.2003.00166.x     Document Type: Article

References (53)

1. Andrews L. B., Fullarton J. E., Holtzman N. A. &Motulsky A. G., eds (1994) Assessing Genetic Risks. Implications for Health and Social Policy. National Academy Press, Washington.
2. Atkin K. &Ahmad W. I. U. (2000) Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia. Health and Social Care in the Community 8 (1), 57-69.
3. Barr O. (1999) 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 27 (1), 30-36.
4. Bell J. (1998) The new genetics in clinical practice. British Medical Journal 316, 618-620.
5. Blacher J. &Baker B. (2002) The Best of AAMR: Families and Mental Retardation. AAMR, Washington.
6. Carmichael B., Pembery M., Turner G. &Barnicoat A. (1999) Diagnosis of fragile-X syndrome: the experiences of parents. Journal of Intellectual Disability Research 43 (1), 47-53.
7. Carpenter B. (1997) Families in Context: Emerging Trends in Family Support and Early Intervention. David Fulton Publishers, London.
8. Case S. (2001) Learning to partner, disabling conflict: early indications of an improving relationship between parents and professionals with regard to service provision for children with learning disabilities. Disability and Society 16 (6), 837-854.
9. Chapple A., May C. &Campion P. (1997) Clinical terminology: anxiety and confusion amongst families undergoing genetic counselling. Patient Education and Counselling 32 (1-2), 81-91.
10. Clarke A., Parsons E. &Williams A. (1996) Outcomes and process in genetic counselling. Clinical Genetics 50, 462-469.
11. Collins F. (1997) Preparing health professionals for the genetic revolution. JAMA 278 (15), 1285-1286.
12. Collins V., Halliday J., Kahler S. &Williamson R. (2001) Parents' experiences with genetic counseling after the birth of a baby with a genetic disorder: an exploratory study. Journal of Genetic Counseling 10 (1), 53-72.
13. Denscombe M. (1998) The Good Research Guide for Small-Scale Social Research Projects. Open University Press, Buckingham.
14. Department of Health (2001) Family Matters: Counting Families In. Department of Health, London.
15. Emerson E., Hatton C., Felce D. &Murphy G. (2001) Fundamental Facts. Foundation for People with Learning Disabilities, London.
16. Gatford A. (2001) Down's syndrome: experiences of mothers from different cultures. British Journal of Nursing 10 (18), 1193-1199.
17. Gillman M., Heyman B. &Swain J. (2000) What's in a name? The implications of diagnosis for people with learning difficulties and their family carers. Disability and Society 15 (3), 389-409.
18. Grant G. &Ramcharan P. (2001) Views and experiences of people with intellectual disabilities and their families. Part 2. The family perspective. Journal of Applied Research in Intellectual Disabilities 14, 364-380.
19. Harper P. S. (1998) Practical Genetic Counselling, 5th edn. Wright, London.
20. Hogenboom M. (2001) Living with Genetic Syndromes Associated with Intellectual Disability. Jessica Kingsley Publishers, London.
21. Hornby G. (1994) Counselling in child disability. Skills for Working with Parents. Chapman &Hall, London.
22. Human Genetics Commission (2002) Inside Information: Balancing Interests in the Use of Personal Genetic Data. Department of Health, London.
23. Kearney P. M. &Griffin T. (2001) Between joy and sorrow: being a parent of a child with developmental disability. Journal of Advanced Nursing 34 (5), 582-592.
24. Kidd J., Cook T. &Marteau T. (1993) Is routine AFP screening in pregnancy reassuring? Journal of Psychosomatic Research 37 (7), 717-722.
25. Kirk M. (1999) Preparing for the future: the status of genetics education in diploma level training courses in the UK. Nurse Education Today 19 (2), 107-115.
26. Knox M., Parmenter T., Atkinson N. &Yazbeck M. (2000) Family control: the views of families who have a child with an intellectual disability. Journal of Applied Research in Intellectual Disabilities 13, 17-28.
27. Marteau T. M. &Croyle R. T. (1998) Psychological response to genetic testing. British Medical Journal 316, 693-696.
28. Marteau T. &Richards M., eds (1996) The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge University Press, Cambridge.
29. Maxwell V. &Barr O. (2003) With the benefit of hindsight: a mother's reflections on raising a child with Down syndrome. Journal of Learning Disabilities 7 (1), 51-64.
30. McConkie-Rosell A. &DeVellis B. (2000) Threat to parental role: a possible mechanism of altered self concept related to carrier knowledge. Journal of Genetic Counseling 9 (4), 285-302.
31. McConkie-Rosell A., Spiridigliozzi G. A., Sullivan J. A., Dawson D. V. &Lachiewicz A. M. (2000) Carrier testing in fragile-X syndrome: effect on self concept. American Journal of Medical Genetics 92, 336-342.
32. McConkie-Rosell A., Spiridigliozzi G. A., Sullivan J. A., Dawson D. V. &Lachiewicz A. M. (2001) Longitudinal study of carrier testing process for fragile-X syndrome: perceptions and coping. American Journal of Medical Genetics 98, 37-45.
33. McGowan R. (1999) Beyond the disorder: one parent's reflection on genetic counselling. Journal of Medical Ethics 25, 195-199.
34. McKinnon M. S. (1997) Predisposition genetic testing for late-onset disorders in adults. A position paper of the National Society of Genetic Counsellors. JAMA 278 (15), 1217-1219.
35. McLeod J. (1994) Doing Counselling Research, Sage, London.
36. McLeod J. (2001) Qualitative Research in Counselling and Psychotherapy. Sage, London.
37. Michie S., Axworthy D., Weinman J. &Marteau T. (1996) Genetic counselling: predicting patient outcomes. Psychology and Health 11, 797-807.
38. Michie S., McDonald V. &Marteau T. M. (1997) Genetic counselling: information given, recall and satisfaction. Patient Education and Counselling 32 (1-2), 101-106.
39. Miles M. B. &Huberman A. M. (1994) Qualitative Data Analysis: An Expanded Sourcebook, 2nd edn. Sage, London.
40. Miller N. B., Burmester S., Callahan D. G., Dieterle J. &Niedermeyer S. (1994) Nobody's Perfect. Paul H. Brookes, Baltimore.
41. Mitchell W. &Sloper P. (2002) Information that informs rather than alienates families with disabled children: developing a model of good practice. Health and Social Care in the Community 10 (2), 74-81.
42. Morritt J., Waterson T. &Magnay D. (1996) Access to current genetic investigations for children with special educational needs. British Journal of Learning Disabilities 24 (2), 164-166.
43. Patterson J. (1995) Promoting resilience in families experiencing stress. Pediatric Clinics of North America 42 (1), 47-63.
44. Patton M. (2002) Qualitative Research and Evaluation Methods, 3rd edn. Sage, Thousand Oaks, California.
45. Richards M. P. M. (1993) The new genetics: some issues for social scientists. Sociology of Health and Illness 15 (5), 565-586.
46. Shankar A., Chapman P. &Goodship J. (1999) Genetic counselling: do we recognise and meet the consultants' agenda? Journal of Medical Genetics 36, 580-582.
47. Shiloh S., Avdor O. &Goodman R. M. (1990) Satisfaction with genetic counselling: dimensions and measurement. American Journal of Medical Genetics 37, 522-529.
48. Skirton H. (2001) The client's perspective of genetic counselling - A grounded theory study. Journal of Genetic Counseling 10 (4), 311-329.
49. Skirton H. &Patch C. (2002) Genetics for Healthcare Professionals: a Lifestage Approach. Bios, Oxford.
50. Skirton H., Barnes C., Curtis G. &Walford-Moore J. (1997) The role and practice of the genetic nurse: report of AGNC working party. Journal of Medical Genetics 34, 141-147.
51. Ward L. (2001) Considered Choices? The New Genetics, Prenatal Testing and People with Learning Disabilities. British Institute of Learning Disabilities, Kidderminster.
52. Williams V. &Robinson C. (2001) More than one wavelength: identifying, understanding and resolving conflicts of interest between people with intellectual disabilities and their family carers. Journal of Applied Research in Intellectual Disabilities 14, 30-46.
53. van Zurren F. J., Schie E. C. M. & van Baaren N. K. (1997) Uncertainty in the information provided during genetic counselling. Patient Education and Counselling 32 (1-2), 129-139.