Supporting parents who have a child referred for genetic investigation: The contribution of health visitors

Journal of Advanced Nursing

Volumn 54, Issue 2, 2006, Pages 141-150

  Barr, Owen G ^a   McConkey, Roy ^a  

^a UNIVERSITY OF ULSTER   (United Kingdom)

Author keywords

Children; Community health care; Empirical research report; Genetics; Health visitors; Parents; Questionnaire survey; Research report

Indexed keywords

ADULT; AGED; ARTICLE; ATTITUDE TO HEALTH; CHILD; CHILD HEALTH CARE; COMMUNITY HEALTH NURSING; FEMALE; GENERAL PRACTICE; GENETIC SCREENING; HANDICAPPED CHILD; HOSPITAL MANAGEMENT; HUMAN; MIDDLE AGED; NURSE ATTITUDE; PARENT; PATIENT REFERRAL; PROFESSIONAL COMPETENCE; PSYCHOLOGICAL ASPECT; PUBLIC RELATIONS; STATISTICS;

ADULT; AGED; APPOINTMENTS AND SCHEDULES; ATTITUDE TO HEALTH; CHILD; CHILD HEALTH SERVICES; COMMUNITY HEALTH NURSING; DISABLED CHILDREN; FAMILY PRACTICE; FEMALE; GENETIC SCREENING; HUMANS; INTERPROFESSIONAL RELATIONS; MIDDLE AGED; NURSE'S ROLE; PARENTS; PROFESSIONAL COMPETENCE; REFERRAL AND CONSULTATION;

EID: 33645151054     PISSN: 03092402     EISSN: 13652648     Source Type: Journal    
DOI: 10.1111/j.1365-2648.2006.03803.x     Document Type: Article

References (43)

1. Appleby F. & Frost M. (2005) Public health nursing - health visiting. In Community Health Care Nursing, 3rd edn (Sines D., Appleby F. & Frost M., eds), Blackwell Science, Oxford, pp. 114-127.
2. Bankhead C., Emery J., Qureshi N., Campbell H., Austoker J. & Watson E. (2001) New development in genetics - knowledge, attitudes and information needs of practice nurses. Family Practice 18, 475-486.
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. Barr O. (2004) Parents' experience of having their child referred to a geneticist and the role of health visitors in providing support during this process. Unpublished PhD Thesis, University of Ulster, Ulster.
5. Barr O. & Millar R. (2003) Parents of children with intellectual disabilities: their expectations and experience of genetic counselling. Journal of Applied Research in Intellectual Disabilities 16(3), 189-204.
6. Brain K., Soldan J., Sampson J. & Gray J. (2003) Genetic counselling protocols for hereditary non-polyposis colorectal cancer: a survey of UK regional genetics centres. Clinical Genetics 63, 198-204.
7. Burton H. (2003) Addressing Genetics, Delivering Health: A Strategy for Advancing the Dissemination and Application of Genetics Knowledge Throughout our Health Professions. The Wellcome Trust/Department of Health, London.
8. Burton H. & Stewart A. (2003) From mendel to the human genome project: the implications for nurse education. Nurse Education Today 23, 380-385.
9. 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.
10. Chapple A., May C. & Campion P. (1995) Lay understanding of genetic disease: a British study of families attending a Genetic Counselling Service. Journal of Genetic Counseling 4(4), 281-300.
11. Department of Health (2001) Family Matters. Counting Families In. The Stationary Office, London.
12. Department of Health (2003) Our Inheritance, Our Future: Realising the Potential of Genetics in the NHS Cm 5791-11. The Stationary Office, London.
13. Donaldson S.K. (1997) The genetic social revolution and the professional status of nursing. Nursing Outlook 45(6), 278-279.
14. Donaldson S.K. (2000) Clinical genetics. Nursing Clinics of North America 35(3), xiii.
15. Donnai D. & Elles R. (2001) Integrating regional genetic services: current and future service provision. British Medical Journal 7293, 1048-1050.
16. Emery J. & Hayflick S. (2001) The challenge of integrating genetic medicine into primary care. British Medical Journal 7293, 1027-1030.
17. Emery J., Watson E., Rose P. & Andermann A. (1999) A systematic review of the literature exploring the role of primary care in genetic services. Family Practice 16, 426-445.
18. Fry A., Campbell H., Gudmundsdottir H., Rush R., Porteous M., Gorman D. & Cull A. (1999) GP's views on their role in cancer genetics services and current practice. Family Practice 16, 468-474.
19. Gosling V. & Whitehead L. (2001) Young People with Tuberous Sclerosis (TS): Exploring Young People and their Families Experiences of Living with TS. Research Report 81/01. Health and Community Care Research Unit, University of Liverpool, Liverpool.
20. Green J. & Murton F. (1996) Diagnosis of Duchenne muscular dystrophy: parents' experiences and satisfaction. Child: Care, Health and Development 22(2), 113-118.
21. Harper P. (1997) What do we mean by genetic testing? In: Genetics, Society and Clinical Practice (Harper P. & Clarke A., eds), Bios Scientific Publishers, Oxford, pp. 7-14.
22. Human Genetics Commission (2002) Inside Information: Balancing Interests in the Use of Personal Genetic Data. Department of Health, London.
23. Human Genetics Commission (2005) Profiling the Newborn. Department of Health, London.
24. International Council of Nurses (2003) Genetics and nursing. Nursing Ethics 10(3), 323-325.
25. Kirk M., McDonald K., Anstey S. & Longley M. (2003) Fit for Practice in the Genetics Era: A Competence Based Education for Nurses, Midwives and Health Visitors. Genomics Policy Unit, University of Wales and Medical Genetics Service for Wales, University Hospital of Wales, Cardiff.
26. MacLeod R., Booth K. & Crauford D. (2002) Patients' perceptions of what makes genetic counselling effective; an interpretative phenomenological analysis. Journal of Health Psychology 7(2), 145-156.
27. Maxwell V. & Barr O. (2003) With the benefit of hindsight: a mother's reflection on raising a child with Down Syndrome. Journal of Learning Disabilities 7(1), 51-64.
28. McCall J. (2003) Review of Clinical Genetics Services in Northern Ireland. DHSSPS, Belfast.
29. McGowan R. (1999) Beyond the disorder: one parent's reflection on genetic counselling. Journal of Medical Ethics 25, 195-199.
30. Metcalfe A. & Burton H. (2003) Post registration genetics education provision for nurses, midwives and health visitors in the UK. Journal of Advanced Nursing 44(4), 350-359.
31. Miller N.B., Burmester S., Callahan D.G., Dieterle J. & Niedermeyer S. (1994) Nobody's Perfect. Paul H. Brookes, Baltimore.
32. National Coalition for Health Professional Education in Genetics (2001) Core Competencies in Genetics Essential for All Health Care Professionals. Retrieved from http://www.nchpeg.org/ on 11 July 2005.
33. Nicol M.J. (2002) The teaching of genetics in New Zealand undergraduate nursing programmes. Nurse Education Today 22, 401-408.
34. Petersen A. (2002) The new genetics and the media. In: The New Genetics and the Public's Health (Petersen A., Bunton R., eds), Routledge, London, pp. 103-134.
35. Prows C.A. & Prows D.R. (2004) Medication selection by genotype. American Journal of Nursing 104(5), 60-69.
36. Shaw C., Abrams K. & Marteau T. (1999) Psychological impact of predicting individual's risk of illness: a systematic review. Social Science and Medicine 49, 1571-1598.
37. Skirton H. (2001) The client's perspective of genetic counselling - a grounded theory study. Journal of Genetic Counseling 10(4), 311-329.
38. Skirton H., Patch C. & Williams J. (2005) Applied Genetics in Healthcare. Taylor and Francis, Abingdon, Oxford.
39. St. John T. (2004) First impressions. Learning Disability Practice 7(8), 12-14.
40. US Surgeon General (2004) Family History Initiative. Retrieved from http://www.hhs.gov/familyhistory/on 11 July 2005.
41. Watkins D. (2003) Health visiting/public health nursing. In Community Health Nursing: 'Frameworks for Practice, 2nd edn (Watkins D., Edwards J. & Gastrell P., eds), Bailliere Tindall, London, pp. 234-246.
42. Whitehead L. & Gosling V. (2003) Parent's perceptions of interactions with health professionals in the pathway to gaining a diagnosis of tuberous sclerosis (TS) and beyond. Research in Developmental Disabilities 24, 109-119.
43. Zimmern R., Emery J. & Richards T. (2001) Putting genetics in perspective. British Medical Journal 7293, 1005-1010.