Hospice nurses and genetics: Implications for end-of-life care

Journal of Clinical Nursing

Volumn 19, Issue 1-2, 2010, Pages 192-207

  Metcalfe, Alison ^a   Pumphrey, Rachel ^a   Clifford, Collette ^a  

^a UNIVERSITY OF BIRMINGHAM   (United Kingdom)

Author keywords

Education; Family; Genetics; Nursing; Palliative care; Psychosocial nursing

Indexed keywords

ADULT; AGED; ARTICLE; EDUCATION; GENETICS; HOSPICE CARE; HUMAN; INTERVIEW; MIDDLE AGED; NURSING CARE; PALLIATIVE THERAPY; QUESTIONNAIRE; TERMINAL CARE; UNITED KINGDOM;

ADULT; AGED; ENGLAND; GENETICS; HOSPICE CARE; HUMANS; INTERVIEWS AS TOPIC; MIDDLE AGED; NURSING CARE; PALLIATIVE CARE; QUESTIONNAIRES; TERMINAL CARE; WALES; YOUNG ADULT;

EID: 73149102288     PISSN: 09621067     EISSN: 13652702     Source Type: Journal    
DOI: 10.1111/j.1365-2702.2009.02935.x     Document Type: Article

References (32)

1. Broadstock M, Michie S, Gray J, Mackay J Marteau TM (2000) The psychological consequences of offering mutation searching in the family for those at risk of hereditary breast and ovarian cancer - a pilot study. Psycho-Oncology 9, 537 548.
2. Burke S Kirk M (2006) Genetics education in the nursing profession: literature review. Journal of Advanced Nursing 54, 228 237.
3. Chapple A, May C Campion P (1995) Lay understanding of genetic disease: a British study of families attending a genetic counseling service. Journal of Genetic Counseling 4, 281 300.
4. Claus E, Risch N Thompson W (1991) Genetics analysis of breast cancer in the cancer and steroid hormone study. American Journal of Human Genetics 48, 232 242.
5. Clifford C (1997) Qualitative Research Methodology in Nursing and Healthcare. Churchill Livingstone, Edinburgh.
6. Clifford C, Metcalfe A Pumphrey R (2007) Hospice Nurses' Capacity and Training Needs to Support End-of-Life Patients and Families with Genetic Predisposition to Disease. Report for General Nursing Council of England and Wales. University of Birmingham, UK.
7. Codori A-M, Slavney PR, Young C, Miglioretti DL Brandt J (1997) Predictors of psychological adjustment to genetic testing for Huntington's disease. Health Psychology 16, 36 50.
8. Conley YP Tinkle MB (2007) The future of genomic nursing research. Journal of Nursing Scholarship 39, 17 24.
9. Day L Patch C (2002) The new genetics: a research agenda for nurses? Nursing Times Research 7, 161 163.
10. Fisher M (1995) Psychological needs and care in the hospice setting. European Journal of Palliative Care 2, 115 119.
11. Foster C, Eeles R, Ardern-Jones A, Moynihan C Watson M (2004) Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing. Psychology and Health 19, 439 455.
12. Hospice Information (2006) [Online] Available at: http://www. hospiceinformation.info/indexasp (accessed 22 January 2006).
13. Kenen R, Ardern-Jones A Eeles R (2006) Social separation among women under 40 years of age diagnosed with breast cancer and carrying a BRCA1 or BRCA2 mutation. Journal of Genetic Counseling 15, 149 162.
14. Kirk M (1999) Preparing for the future: the status of genetics education in diploma-level training courses for nurses in the UK. Nurse Education Today 19, 107 115.
15. Lalloo F, Evans G Hopwood P (2000) Investigating genetic predisposition to cancer. European Journal of Palliative Care 7, 183 184.
16. Lillie AK (2006) Exploring cancer genetics and care of the family: an evolving challenge for palliative care. International Journal of Palliative Nursing 12, 70 74.
17. Liossi C, Hatira P Mystakdou K (1997) The use of the genogram in palliative care. Palliative Medicine 11, 455 461.
18. McCahon D, Wilson S, Metcalfe A Gill P (2006) Identification and Appropriate Referral of Patients at Risk of Genetic Disorders, the Role of Primary Care. Poster Presentation, British Society of Human Genetics, York.
19. Meiser B (2005) Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology 14, 1060 1074.
20. Metcalfe A Burton H (2003) Postregistration genetics education provision for nurses, midwives and health visitors in the UK. Journal of Advanced Nursing 44, 350 359.
21. Metcalfe A, Werrett J, Burgess L Clifford C (2007) Psychosocial impact of the lack of information given at referral about familial risk for cancer. Psycho-Oncology 16, 458 465.
22. Metcalfe A, Haydon J, Bennett C Farndon P (2008) Midwives' views of the importance of genetics and their confidence with genetic activities in clinical practice: implications for the delivery of genetics education. Journal of Clinical Nursing 17, 519 530.
23. Murray MA, Miller T, Fiset V, O'Connor A Jacobsen MJ (2004) Decision support: helping patients and families to find a balance at the end of life. International Journal of Palliative Nursing 10, 270 277.
24. Richards M (1996) Families, kinships and genetics. In The Troubled Helix: Social and Psychological Implications of the New Human Genetics (Marteau TM Richards M eds). Cambridge University Press, Cambridge, pp. 249 273.
25. Sadler GR, Wasserman L, Fullerton JT Romero M (2004) Supporting patients through genetic screening for cancer risk. Medsurg Nursing 13, 233 246.
26. Sanders T, Campbell R, Sharp D Donovan J (2003) Risk constructions among people who have a first-degree relative with cancer. Health, Risk and Society 5, 53 70.
27. Taylor MRG, Edwards JG Ku L (2006) Lost in transition: challenges in the expanding field of adult genetics. American Journal of Medical Genetics Part C: Seminars in Medical Genetics 142C, 294 303.
28. Travers E, Jones K Nicol J (2007) Palliative care provision in Huntington's disease. International Journal of Palliative Nursing 13, 125 130.
29. Twycross R (2003) Introducing Palliative Care, 4th edn. Radcliffe Medical Press Ltd, Oxford.
30. Walter FM, Emery J, Braithwaite D Marteau TM (2004) Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Annals of Family Medicine 2, 583 594.
31. Werrett JA, Helm RH Carnwell R (2001) The primary and secondary care interface: the educational needs of nursing staff for the provision of seamless care. Journal of Advanced Nursing 34, 629 638.
32. World Health Organisation (2007 Definition of Palliative Care. [Online] Available at: http://www.who.int/cancer/palliative/definition/en (accessed 14 May 2007).