White paper on improving support for family carers in palliative care: Part 1: Recommendations from the European association for palliative care (EAPC) task force on family carers

European Journal of Palliative Care

Volumn 17, Issue 5, 2010, Pages 238-245

  Payne, Sheila ^a,b  

^a European Association for Palliative Care (EAPC)   (United Kingdom)

^b LANCASTER UNIVERSITY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 77956907223     PISSN: 13522779     EISSN: 14790793     Source Type: Journal    
DOI: None     Document Type: Article

References (53)

1. Centeno C, Clark D, Lynch T et al. Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC Task Force. Palliat Med 2007;21:463-471.
2. Pastrana T, Jünger S, Ostgathe C et al. A matter of definition - key elements identified in a discourse analysis of definitions of palliative care. Palliat Med 2008;22:222-232.
3. Radbruch L, Payne S; the Board of Directors of the EAPC. White Paper on standards and norms for hospice and palliative care in Europe: part
4. European Journal of Palliative Care 2009;16:278-289.
5. European Association for Palliative Care website. www.eapcnet.org/about/ bylaws.html (last accessed 08/07/2010)
6. Radbruch L, Payne S; the Board of Directors of the EAPC. White Paper on standards and norms for hospice and palliative care in Europe: part 2. European Journal of Palliative Care 2009;17:22-33.
7. National Institute for Health and Clinical Excellence. Guidance on Cancer Services. Improving Supportive and Palliative Care for Adults with Cancer. The Manual. London: NICE, 2004, chapter 12, p 155. www.nice.org.uk/nicemedia/live/ 10893/28816/28816pdf (last accessed 05/05/2010)
8. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000;3:287-300.
9. Harding R, Higginson IJ. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003;17:63-74.
10. Hudson P, Payne S (eds). Family carers in palliative care: a guide for health and social care professionals. Oxford: Oxford University Press, 2008.
11. Eurocarers factsheet. Family care in Europe. The contribution of carers to long-term care, especially for older people. Eurocarers, 2009.
12. Payne S. Resilient carers and caregivers. In: Monroe B, Oliviere D (eds). Resilience in palliative care: achievement in adversity. Oxford: Oxford University Press, 2007.
13. Grande G, Stajduhar K, Aoun S et al. Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med 2009;23:339-344.
14. Seale C. Changing patterns of death and dying. Soc Sci Med 2000;51:917-930.
15. Allan G, Hawker S, Crow G. Family diversity and change in Britain and Western Europe. Journal of Family Issues 2001;22:819-837.
16. Payne S, Hudson P. Assessing the family and caregivers. In: Walsh D, Caraceni AT, Fainsinger R et al (eds). Palliative medicine: expert consult, 1st edn. New York: Elsevier, 2008.
17. Dugan E. Solitary lives of Europeans are leading continent into old age. The Independent, 8 May 2008.
18. Kellehear A. Understanding the social and cultural dimensions of family caregiving. In: Hudson P, Payne S (eds). Family carers in palliative care: a guide for health and social care professionals. Oxford: Oxford University Press, 2008.
19. Andersson A, Carstensen J, Levin LA et al. Costs of informal care for patients in advanced home care: a population-based study. Int J Technol Assess Health Care 2003;19:656-663.
20. Davies E, Higginson IJ (eds). Better Palliative Care for Older People. Copenhagen: World Health Organization Europe, 2004. www.euro.who.int/document/ E82933pdf (last accessed 05/05/2010)
21. Department of Health. End of Life Care Strategy. Promoting high quality care for all adults at the end of life. London: DH, 2008. www.dh.gov. uk/prod-consum-dh/groups/dh-digitalassets/@dh/@en/documents/digitalasset/ dh-086345pdf (last accessed 05/05/2010)
22. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: a systematic review. BMJ 2006;332:515-521.
23. Monroe B, Oliviere D. Communicating with family carers. In: Hudson P, Payne S (eds). Family carers in palliative care: a guide for health and social care professionals. Oxford: Oxford University Press, 2008.
24. Maher J, Green H. National Statistics: Carers 2000. London: The Stationery Office, 2002. www.statistics.gov. uk/downloads/theme-health/ carers2000pdf (last accessed 05/05/2010)
25. Grande GE, Ewing G; National Forum for Hospice at Home. Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death. Palliat Med 2009;23:248-256.
26. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: 'they don't know what they don't know'. JAMA 2004;291:483-491.
27. Agar M, Currow DC, Shelby-James TM et al. Preference for place of care and place of death in palliative care: are these different questions? Palliat Med 2008;22:787-795.
28. Thorpe G. Enabling more dying people to remain at home. BMJ 1993;307:915-918.
29. Houttekier D, Cohen J, Bilsen J et al. Determinants of the place of death in the Brussels metropolitan region. J Pain Symptom Manage 2009;37:996-1005.
30. Grande G, Ewing G. Death at home unlikely if informal carers prefer otherwise: implications for policy. Palliat Med 2008;22:971-972.
31. Stajduhar KI, Davies B. Variations in and factors influencing family members' decisions for palliative home care. Palliat Med 2005;19:21-32.
32. Horne G, Seymour J, Payne S. Advance care planning: evidence and implications for practice. End of Life Care 2009;3:58-65.
33. Hudson P. Home-based support for palliative care families: challenges and recommendations. Med J Aust 2003;179: S35-37.
34. Milberg A, Strang P, Jakobsson M. Next of kin's experience of powerlessness and helplessness in palliative home care. Support Care Cancer 2004;12:120-128.
35. Morasso G, Costantini M, Di Leo S et al. End-of-life care in Italy: personal experience of family caregivers. A content analysis of open questions from the Italian Survey of the Dying of Cancer (ISDOC). Psychooncology 2008;17:1073-1080.
36. Kissane DW, Bloch S, Burns WI et al. Perceptions of family functioning and cancer. Psychooncology 1994;3:259-269.
37. Kissane DW, Bloch S, Dowe DL et al. The Melbourne Family Grief Study, I: perceptions of family functioning in bereavement. Am J Psychiatry 1996;153:650-658.
38. Kissane DW, Bloch S, McKenzie M et al. Family grief therapy: a preliminary account of a new model to promote healthy family functioning during palliative care and bereavement. Psychooncology 1998;7:14-25.
39. Kissane DW, Bloch S. Family focused grief therapy: a model of familycentred care during palliative care and bereavement. Buckingham: Open University Press, 2002.
40. Exley C, Allen D. A critical examination of home care: end of life care as an illustrative case. Soc Sci Med 2007;65:2317-2327.
41. Smith P, Payne S, Ramcharan P. Carers of the terminally ill and employment issues: a comprehensive literature review: final report. Help the Hospices, 2006.
42. Park SM, Kim YJ, Kim S et al. Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance. Support Care Cancer 2010;18:699-706.
43. Soothill K, Morris SM, Harman JC et al. Informal carers of cancer patients: what are their unmet psychosocial needs? Health Soc Care Community 2001;9:464-475.
44. Hudson P. Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 2004;10:58-65.
45. Bonanno GA. Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? Am Psychol 2004;59:20-28.
46. Wong WK, Ussher J. Bereaved informal cancer carers making sense of their palliative care experiences at home. Health Soc Care Community 2009;17:274-282.
47. Stajduhar KI, Allan DE, Cohen SR et al. Preferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers. Palliat Med 2008;22:85-88.
48. Stajduhar KI. Examining the perspectives of family members involved in the delivery of palliative care at home. J Palliat Care 2003;19:27-35.
49. Candy B, Jones L, Williams R, Tookman A, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease (Protocol). Cochrane Database of Systematic Reviews 2009;1: CD007617.
50. Payne S, Hudson P. EAPC Task Force on Family Carers: aims and objectives. European Journal of Palliative Care 2009;16:77-81.
51. Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer. J Clin Nurs 2009;18:1379-1393.
52. Ingleton C, Payne S, Sargeant A et al. Barriers to achieving care at home at the end of life: transferring patients between care settings using patient transport services. Palliat Med 2009;23:723-730.
53. Ingleton C, Payne S, Nolan M et al. Respite in palliative care: a review and discussion of the literature. Palliat Med 2003;17:567-575.