Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study

Palliative Medicine

Volumn 27, Issue 3, 2013, Pages 244-256

  Ewing, Gail ^a   Grande, Gunn ^b  

^a UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^b UNIVERSITY OF MANCHESTER   (United Kingdom)

Author keywords

Carers; evidence based practice; needs assessment; palliative care; qualitative research

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER; FEMALE; HEALTH SERVICE; HOME CARE; HOSPICE CARE; HUMAN; INFORMATION PROCESSING; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SOCIAL SUPPORT; TERMINAL CARE; UNITED KINGDOM; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; FEMALE; FOCUS GROUPS; GREAT BRITAIN; HEALTH SERVICES NEEDS AND DEMAND; HOME CARE SERVICES; HOSPICE CARE; HUMANS; MALE; MIDDLE AGED; NEEDS ASSESSMENT; QUALITATIVE RESEARCH; SOCIAL SUPPORT; TERMINAL CARE;

EID: 84881649403     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216312440607     Document Type: Article

References (60)

1. Higginson IJ Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000; 3: 287–300.
2. Thomas C Morris S McIllmurray M Soothhill K Francis B Harman J. The Psychosocial Needs of Cancer Patients and their Main Carers. Project report. Lancaster: Institute for Health Research, Lancaster University, 2001, cited in National Institute for Clinical Excellence. Guidance on Cancer Services. Improving Supportive and Palliative Care for Adults with Cancer. The Manual. London: NICE; 2004.
3. Gomes B Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. Br Med J 2006; 332: 515–521.
4. Grande G Ewing G. Death at home unlikely if informal carers prefer otherwise: implications for policy. Palliat Med 2008; 22: 971–972.
5. Payne S Hudson P Grande G, et al. White Paper on improving support for family carers in palliative care: part 1. Eur J Palliat Care 2010; 17: 238–245.
6. Aoun SM Kristjanson LJ Currow DC, et al. Caregiving for the terminally ill: at what cost? Palliat Med 2005; 19: 551–555.
7. Mangan PA Taylor KL Yabroff KR, et al. Caregiving near the end of life: Unmet needs and potential solutions. Palliat Support Care 2003; 1: 247–259.
8. Stenberg U Ruland CM Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psychooncology 2010; 19: 1013–1025.
9. Payne S Smith P Dean S. Identifying the concerns of informal carers in palliative care. Palliat Med 1999; 13: 37–44.
10. 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.
11. Milberg A Strang P Jakobsson M. Next of kin's experience of powerlessness and helplessness in palliative home care. Support Care Canc 2004; 12: 120–128.
12. Rhodes P Shaw S. Informal care and terminal illness. Health Soc Care Community 1999; 7: 39–50.
13. Murray SA Boyd K Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. Br Med J 2002; 325: 929.
14. Jarrett NJ Payne SA Wiles RA. Terminally ill patients’ and lay-carers’ perceptions and experiences of community-based services. J Adv Nurs 1999; 29: 476–483.
15. Young AJ Rogers A Addington-Hall JM. The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire. Health Soc Care Community 2008; 16: 419–428.
16. Keesing S Rosenwax L McNamara B. ‘Doubly deprived’: a post-death qualitative study of primary carers of people who died in Western Australia. Health Soc Care Community 2011; 19: 636–644.
17. Schulz R Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. J Am Med Assoc 1999; 282: 2215–2219.
18. Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: DH, 2008.
19. Deeken JF Taylor KL Mangan P, et al. Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage 2003; 26: 922–953.
20. Hanson E Nolan J Magnusson L, et al. COAT: The carers outcome agreement tool. A new approach to working with family carers. Getting Research into Practice (GRIP) Report No 1, University of Sheffield, Sheffield, 2006.
21. Keefe J Guberman N Fancey P, et al. Caregivers’ aspirations, realities, and expectations: the CARE tool. J Appl Gerontol 2008; 27: 286–308.
22. Hudson PL Trauer T Graham S, et al. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 2010; 24: 656–668.
23. Stajduhar KI Funk L Toye C, et al. Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliat Med 2010; 24: 573–593.
24. Kristjanson LJ Atwood J Degner LF. Validity and reliability of the family inventory of needs (FIN): measuring the care needs of families of advanced cancer patients. J Nurs Meas 1995; 3: 109–126.
25. Kristjanson LJ. Validity and reliability testing of the FAMCARE scale: measuring family satisfaction with advanced cancer care. Soc Sci Med 1993; 36: 693–701.
26. Hileman JW Lackey NR Hassanein RS. Identifying the needs of home caregivers of patients with cancer. Oncol Nurs Forum 1992; 19: 771–777.
27. Osse BHP Vernooij-Dassen MJFJ Schade EM, et al. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs 2006; 29: 378–388.
28. Salmon JR Kwak J Acquaviva KD, et al. Validation of the caregiving at life's end questionnaire. Am J Hosp Palliat Care 2005; 22: 188–194.
29. Mitchell G Girgis A Jiwa M, et al. A GP caregiver needs toolkit versus usual care in the management of the needs of caregivers of patients with advanced cancer: a randomized controlled trial. Trials 2010; 11: 115.
30. Help the Hospices. Identifying carers’ needs in the palliative setting: guidance for professionals. Help the Hospices, London, 2009.
31. Grande GE Todd CJ Barclay SI, et al. A randomized controlled trial of a hospital at home service for the terminally ill. Palliat Med 2000; 14: 375–385.
32. Hearn J Higginson IJ. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 1998; 12: 317–332.
33. Ritchie J Spencer L O’Conner W. Carrying out qualitative analysis. In: Ritchie J Lewis J (eds) Qualitative Research Practice. London: Sage Publications, 2003.
34. Twigg J. Models of carers: how do social care agencies conceptualise their relationship with informal carers. J Soc Pol 1989; 18: 53–66.
35. Stajduhar KI Nickel DD Martin WL, et al. Situated/being situated: client and co-worker roles of family caregivers in hospice palliative care. Soc Sci Med 2008; 67: 1789–1797.
36. Andersson M Ekwall AK Hallberg IR, et al. The experience of being next of kin to an older person in the last phase of life. Palliat Support Care 2010; 8: 17–26.
37. Armes PJ Addington-Hall JM. Perspectives on symptom control in patients receiving community palliative care. Palliat Med 2003; 17: 608–615.
38. Cain R Maclean M Sellick S. Giving support and getting help: Informal caregivers’ experiences with palliative care services. Palliat Support Care 2004; 2: 265–272.
39. Aranda SK Hayman-White K. Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs 2001; 24: 300–307.
40. Zapart S Kenny P Hall J, et al. Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care. Health Soc Care Community 2007; 15: 97–107.
41. Harding R Higginson I. Working with ambivalence: informal caregivers of patients at the end of life. Support Care Canc 2001; 9: 642–645.
42. Hegarty M Abernethy A Olver I, et al. Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey. Palliat Med 2011; 25: 266–277.
43. Rabow MW Hauser JM Adams J. Supporting family caregivers at the end of life: “they don’t know what they don’t know”. J Am Med Assoc 2004; 291: 483–491.
44. Pollock K Wilson E Porock D, et al. Evaluating the impact of a cancer supportive care project in the community: patient and professional configurations of need. Health Soc Care Community 2007; 15: 520–529.
45. Anderson BA Kralik D. Palliative care at home: carers and medication management. Palliat Support Care 2008; 6: 349–356.
46. 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 2008; 18: 1379–1393.
47. Jansma FF Schure LM de Jong BM. Support requirements for caregivers of patients with palliative cancer. Patient Educ Counsel 2005; 58: 182–186.
48. Friedrichsen MJ. Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden. Palliat Support Care 2003; 1: 239–245.
49. Morris SM Thomas C. The need to know: informal carers and information. Eur J Cancer Care 2002; 11: 183–187.
50. Docherty A Owens A Asadi-Lari M, et al. Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med 2008; 22: 153–171.
51. Steinhauser KE Christakis NA Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. J Am Med Assoc 2000; 284: 2476–2482.
52. Steinhauser KE Clipp EC McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med 2000; 132: 825–832.
53. Madsen K Poulsen HS. Needs for everyday life support for brain tumour patients’ relatives: systematic literature review. Eur J Cancer Care 2011; 20: 33–43.
54. 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.
55. Koopmanschap MA van Exel NJA van den Bos GAM, et al. The desire for support and respite care: preferences of Dutch informal caregivers. Health Pol 2004; 68: 309–320.
56. Payne S Hudson P Grande G, et al. White Paper on Improving Support for Family Carers in Palliative Care: Recommendations from the European Association for Palliative Care Task Force on Family Carers. Part 2. Eur J Palliat Care 2010; 17(6): 286-290.
57. Kristjanson LJ Cousins K White K, et al. Evaluation of a night respite community palliative care service. Int J Palliat Nurs 2004; 10: 84–90.
58. Arksey H Corden A. Policy initiatives for 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, 2009, pp. 55–71.
59. Buckner L Yeandle S. Valuing carers 2011. Calculating the value of carers’ support. London: Carers UK, 2011.
60. Hudson R. Responding to family carers’ spiritual needs. In: Hudson P Payne S (eds) Family carers in palliative care. A guide for health and social care professionals. Oxford: Oxford University Press, 2009. pp. 37–54.