Supportive Care in Cancer

, Volume 15, Issue 2, pp 163–170 | Cite as

Hospice at Home service: the carer’s perspective

Original Article

Abstract

Goals of the work

The aim of this study was to explore the bereaved caregivers’ experience of the Hospice at Home service delivered in one region of the UK.

Materials and methods

Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002.

Main results

In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one’s wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support.

Conclusions

The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers’ views and experiences of accessing the Hospice at Home service.

Keywords

Palliative care Hospice at home Family caregivers Bereaved caregivers’ experience Support by health professionals 

Notes

Acknowledgements

We would like to acknowledge Allison Spence, Beverley Craig, Kathy Roddy and Sandra Fulton from the Hospice at Home service for their contributions to this paper.

References

  1. 1.
    Noble S, Hargreaves P (2002) Hospice day care. Eur J Palliat Care 9:153–155Google Scholar
  2. 2.
    Dunlop R, Davies RJ, Hockley JM (1989) Preferred versus actual place of death: a hospital palliative care support team study. Palliat Med 3:197–201Google Scholar
  3. 3.
    Gilbar O, Steiner M (1996) When death comes: where should patients die? Hosp J 11(1):31–48PubMedCrossRefGoogle Scholar
  4. 4.
    Tang ST, Liu TW, Lai MS, McCorkle R (2005) Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan. Soc Sci Med 61(7):1560–1566PubMedCrossRefGoogle Scholar
  5. 5.
    Choi KS, Chae YM, Lee CG, Kim SY, Lee SW, Heo DS, Kim JS, Lee KS, Hong YS, Yun YH (2005) Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea. Support Care Cancer 13(8):565–572PubMedCrossRefGoogle Scholar
  6. 6.
    Department of Health (2000) The NHS cancer plan. HMSO, LondonGoogle Scholar
  7. 7.
    Storey L, Pemberton C, Howard A (2004) Preferred place of care plan: recording and meeting the needs of palliative care patients. Cancer action, 12th edn. CAT, Department of Palliative Care, LondonGoogle Scholar
  8. 8.
    National Institute for Clinical Excellence (2004) Palliative and supportive care for cancer patients. NICE, LondonGoogle Scholar
  9. 9.
    Northern Ireland Hospice (1997) Beyond 2000 towards excellence strategy for the Northern Ireland Hospice 1997–2002. Northern Ireland Hospice, BelfastGoogle Scholar
  10. 10.
    Hospice Information Service (2005) Hospice and palliative care fact and figure 2005. Hospice Information, LondonGoogle Scholar
  11. 11.
    Sims A, Radford J, Doran K, Page H (1997) Social class variation in place of cancer death. Palliat Med 11(5):369–373PubMedGoogle Scholar
  12. 12.
    Travers E, Grady A (2002) Hospice at Home 1: the development of a crisis intervention service. Int J Palliat Nurs 8(4):162–168PubMedGoogle Scholar
  13. 13.
    Grady A, Travers E (2003) Hospice at Home 2: evaluating a crisis intervention service. Int J Palliat Nurs 9(8):326–335PubMedGoogle Scholar
  14. 14.
    Tzala S, Lord J, Ziras N, Repousis P, Potamianou A, Tzala E (2005) Cost of home palliative care compared with conventional hospital care for patients with haematological cancers in Greece. Eur J Health Econ 6:102–106CrossRefPubMedGoogle Scholar
  15. 15.
    Tyrer F, Exley C (2005) Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care. Fam Pract 22:644–646PubMedCrossRefGoogle Scholar
  16. 16.
    Grande GE, Farquhar MC, Barclay SI, Todd CJ (2004) Caregiver bereavement outcome; relationship with Hospice at Home, satisfaction with care and home death. J Palliat Care 20:69–77PubMedGoogle Scholar
  17. 17.
    Singer Y, Bachner Y, Schartzman P, Carmel S (2005) Home-death— the caregivers’ experiences. Journal of Pain and Symptom Management 30(1):70–74PubMedCrossRefGoogle Scholar
  18. 18.
    Higginson IJ, Sen-Gupta GJA (2000) Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 3:287–300PubMedCrossRefGoogle Scholar
  19. 19.
    Hearn J, Higginson IL (1998) Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 12:317–332PubMedCrossRefGoogle Scholar
  20. 20.
    Peters L, Sellick K (2006) Quality of life of cancer patients receiving inpatient and home-based palliative care. J Adv Nurs 53(5):524–533PubMedCrossRefGoogle Scholar
  21. 21.
    Thomas K (2000) Out-of-hours palliative care—bridging the gap. Eur J Palliat Care 7(1):22–35Google Scholar
  22. 22.
    King N, Bell D, Thomas K (2004) Family carers’ experiences of out-of hours community palliative care: a qualitative study. Int J Palliat Nurse 10(2):76–83Google Scholar
  23. 23.
    Thomas K (2001) Out of hours palliative care in the community. Continuing care for the dying at home. Macmillan Cancer Relief, LondonGoogle Scholar
  24. 24.
    Brazil K, Whelan T, O’Brien MA, Sussman J, Pyette N, Bainbridge D (2004) Towards improving the co-ordination of supportive cancer care services in the community. Health Policy 70(1):125–131PubMedCrossRefGoogle Scholar
  25. 25.
    Stajduhar K, Davies B (1998) Death at home: challenges for families and direction for the future. J Palliat Care 14(3):8–14PubMedGoogle Scholar
  26. 26.
    Jarrett N, Payne S, Wiles R (1999) Terminally ill patients and lay-carers’ perceptions and experiences of community-based services. J Adv Nurs 29(2):476–483PubMedCrossRefGoogle Scholar
  27. 27.
    Clarke D, Neale VB (1994) Independent hospice care in the community: two case studies. Health Soc Care Community 2:203–221CrossRefGoogle Scholar
  28. 28.
    Grande GE, Todd CJ, Barclay SIG, Doyle JH (1996) What terminally ill patients value in the support provided by GPS, district and Macmillan nurses. Int J Palliat Nurs 2(3):138–143Google Scholar
  29. 29.
    Sellick SM, Charles K, Dagsvik J, Kelley ML (1996) Palliative care providers’ perspectives on service and education needs. J Palliat Care 12(2):34–38PubMedGoogle Scholar
  30. 30.
    Johnson CB, Slaninka SC (1999) Barriers to accessing hospice services before a late terminal stage. Death Stud 23(3):225–238PubMedCrossRefGoogle Scholar
  31. 31.
    Rogers MS, Barclay SIG, Todd CJ (1998) Developing the Cambridge palliative audit scheme (CAMPAS: a palliative care audit for primary health care team. Br J Gen Pract 48:1224–1227PubMedGoogle Scholar
  32. 32.
    Lecouturier J, Jacoby A, Bradshaw C, Lovel T, Eccles M (1999) Lay carers’ satisfaction with community palliative care: results of a postal survey. Palliat Med 13l:275–283CrossRefGoogle Scholar
  33. 33.
    Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 10(2):58–65PubMedGoogle Scholar
  34. 34.
    Gomes B, Higginson J (2006) Factors influencing death at home in terminally ill patients with cancer: systematic review. Br Med J 332:515–521CrossRefGoogle Scholar
  35. 35.
    Scott G, Whyler N, Grant G (2001) A study of family carers of people with a life-threatening illness1: the carers’ needs analysis. Int J Palliat Nurs 7(6):290–297PubMedGoogle Scholar
  36. 36.
    Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R (2001) Family caregiving in hospice: effects on psychological health and functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J 15(4):1–18PubMedCrossRefGoogle Scholar
  37. 37.
    Cameron JI, Franche RL, Cheung AM, Stewart DE (2002) Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94(2):521–527PubMedCrossRefGoogle Scholar
  38. 38.
    Thielemann P (2000) Educational needs of home caregivers of terminally ill patients: literature review. Am J Hospice Palliat Care 17(4):253–257CrossRefGoogle Scholar
  39. 39.
    Glajchen M (2004) The emerging role and needs of family caregivers in cancer care. J Support Oncol 2(2):145–155PubMedGoogle Scholar
  40. 40.
    Harrington V, Lackey NR, Gates MF (1996) Needs of caregivers of clinic and hospice cancer patients. Cancer Nurs 19(2):118–125PubMedCrossRefGoogle Scholar
  41. 41.
    Conley VM, Burman ME (1997) Informational needs of caregivers of terminal patients in a rural state. Home Healthc Nurse 15(11):808–817PubMedCrossRefGoogle Scholar
  42. 42.
    Steele RG, Fitch MI (1996) Needs of family caregivers of patients receiving home hospice care for cancer. Oncol Nurs Forum 23(5):823–828PubMedGoogle Scholar
  43. 43.
    Rose KE (1999) A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. J Clin Nurs 8(1):81–88PubMedCrossRefGoogle Scholar
  44. 44.
    Jansma FF, Schure LM, Jong BM (2005) Support requirements for caregivers of patients with palliative cancer. Patient Educ Couns 58(2):182–186PubMedCrossRefGoogle Scholar
  45. 45.
    Nolan M, Grant G, Keady J (1996) Understanding family care. Open University Press, BuckinghamGoogle Scholar
  46. 46.
    Broback G, Bertero C (2003) How next of kin experience palliative care of relatives at home. Eur J Cancer Care 12:339–346CrossRefGoogle Scholar
  47. 47.
    Jones RVH, Hunsford J, Fiske J (1993) Death from cancer at home: the carers’ perspective. Br Med J 306:249–251CrossRefGoogle Scholar
  48. 48.
    Eriksson E, Lauri S (2000) Informational and emotional support for cancer patient’s relatives. Eur J Cancer Care 9:8–15CrossRefGoogle Scholar
  49. 49.
    Appelin G, Broback G, Bertero C (2005) A comprehensive picture of palliative care at home from the people involved. Eur J Oncol Nurs 9:315–324PubMedCrossRefGoogle Scholar
  50. 50.
    Cook Gotay C (1984) The experience of cancer during early and advanced stages: the views of patients and their mates. Soc Sci Med 18:605–613CrossRefGoogle Scholar
  51. 51.
    Rinck GC, van den Bos GA, Kleijnen J, de Haes HJ, Schade E, Veenhof CH (1997) Methodological issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol 15:1697–1707PubMedGoogle Scholar
  52. 52.
    Doyle D, Jeffrey J (2000) Palliative care in the home. Oxford University Press, OxfordGoogle Scholar
  53. 53.
    Twycross R (2003) Introducing palliative care, 4th edn. Radcliffe Medical, OxfordGoogle Scholar
  54. 54.
    Salmon JR, Kwak J, Acquaviva KD, Brandt K, Egan KA (2005) Transformative aspects of care giving at life’s end. Journal of Pain Symptom Management 29(2):121–129CrossRefGoogle Scholar
  55. 55.
    Abu-saad H (2001) Evidence-based palliative care. Blackwell Science, OxfordGoogle Scholar
  56. 56.
    Hinton J (2001) How reliable are relatives’ retrospective reports of terminal illness? Patients’ and relatives’ accounts compared. In: Field D, Clark D, Corner J, Davis C (eds) Researching palliative care. Open University Press, Buckingham, pp 98–110Google Scholar
  57. 57.
    Cormack DFS (1992) The research process in nursing, 2nd edn. Blackwell Science, OxfordGoogle Scholar
  58. 58.
    Parahoo AK (1997) Nursing research: principles process and issues. Macmillan, Great BritainGoogle Scholar
  59. 59.
    Pope C, Mays N (1995) Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. Br Med J 311:42–45Google Scholar
  60. 60.
    Weber RP (1990) Basic content analysis, 2nd edn. Sage, Beverley Hills, CaliforniaGoogle Scholar
  61. 61.
    Woods S, Beaver K, Luker K (2000) Users’ views of palliative care services: ethical implications. Nurs Ethics 7(4):314–326PubMedGoogle Scholar
  62. 62.
    McCusker J, Brudevold C (1984) Health services utilisation and costs of care in terminal cancer: implications for hospice programs. Home Health Care Serv Q 5(2):61–74PubMedCrossRefGoogle Scholar
  63. 63.
    Moinpour AM, Polissar L (1989) Factors affecting place of death of hospice and non-hospice cancer patients. Am J Public Health 79(11):1549–1551PubMedGoogle Scholar
  64. 64.
    Costantini M, Camoriano E, Madeddu L, Brizzi P, Verganelli E, Henriquet F (1993) Palliative home care and place of death among cancer patients: a population-based study. Palliat Med 7:323–331PubMedGoogle Scholar
  65. 65.
    Exley C, Tyrer F (2005) Bereaved carers’ views of a Hospice at Home service. Int J Palliat Nurs 11(5):242–246PubMedGoogle Scholar
  66. 66.
    Brazil K, Abernathy T, Critchley P, Krueger P, Loheld L, Willison K, O’Brien CM, Hode M, Edward HG (2002) Care of the seriously ill in the community. Canadian health service research foundation, Canada. Available online at http://www.chsrf.ca/final_research/ogc/brazil_e.php (accessed 16th August 2005)
  67. 67.
    Stetz KM, Hanson WK (1992) Alterations in perceptions of care giving demands in advanced cancer during and after the experience. Hosp J 8:21–34PubMedCrossRefGoogle Scholar
  68. 68.
    Morris SM, Thomas C (2001) The carer’s place in the cancer situation: where does the carer stand in the medical setting? Eur J Cancer Care 10:87–95CrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2006

Authors and Affiliations

  • Dorry McLaughlin
    • 1
  • Kate Sullivan
    • 2
  • Felicity Hasson
    • 3
  1. 1.Northern Ireland Hospice CareBelfastUK
  2. 2.North East Wales InstituteWrexhamUK
  3. 3.Institute of Nursing ResearchUniversity of UlsterNewtownabbeyUK

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