Skip to main content

Advertisement

SpringerLink
Log in

What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers’ experiences.

Method

Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care.

Results

Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient’s condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems.

Conclusions

Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Hinton J (1994) Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives? Palliat Med 8(3):183–196

    Article  PubMed  CAS  Google Scholar 

  2. Townsend J, Frank AO, Fermont D et al (1990) Terminal cancer care and patients’ preference for place of death: a prospective study. BMJ 301(6749):415–417

    Article  PubMed  CAS  Google Scholar 

  3. Cull AM (1991) Studying stress in care givers: art or science? Br J Cancer 64(6):981–984

    Article  PubMed  CAS  Google Scholar 

  4. Gomes B, Higginson IJ (2008) Where people die (1974–2030): past trends, future projections and implications for care. Palliat Med 22(1):33–41

    Article  PubMed  Google Scholar 

  5. Gomes B, Higginson IJ (2006) Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 332(7540):515–521

    Article  PubMed  Google Scholar 

  6. Loke AY, Liu CF, Szeto Y (2003) The difficulties faced by informal caregivers of patients with terminal cancer in Hong Kong and the available social support. Cancer Nurs 26(4):276–283

    Article  PubMed  Google Scholar 

  7. Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 10(2):58–65

    PubMed  Google Scholar 

  8. Payne S, Smith P, Dean S (1999) Identifying the concerns of informal carers in palliative care. Palliat Med 13(1):37–44

    Article  PubMed  CAS  Google Scholar 

  9. Ferrario SR, Cardillo V, Vicario F, Balzarini E, Zotti AM (2004) Advanced cancer at home: caregiving and bereavement. Palliat Med 18(2):129–136

    Article  Google Scholar 

  10. Grunfeld E, Coyle D, Whelan T et al (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170(12):1795–1801

    Article  PubMed  Google Scholar 

  11. Peter, Hours, Iren et al (1991) Information needs of families of cancer patients: a literature review and recommendations. J Cancer Educ 6(4):1543–1554

    Google Scholar 

  12. Hudson P, Aranda S, McMurray N (2002) Intervention development for enhanced lay palliative caregiver support—the use of focus groups. Eur J Cancer Care (Engl) 11(4):262–270

    Article  CAS  Google Scholar 

  13. Harding R, Higginson I (2001) Working with ambivalence: informal caregivers of patients at the end of life. Support Care Cancer 9(8):642–645

    Article  PubMed  CAS  Google Scholar 

  14. Higginson I, Wade A, McCarthy M (1990) Palliative care: views of patients and their families. BMJ 301(6746):277–281

    Article  PubMed  CAS  Google Scholar 

  15. Harding R, Higginson IJ (2003) What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 17(1):63–74

    Article  PubMed  CAS  Google Scholar 

  16. Victor E (2009) A systematic review of interventions for carers in the UK: outcomes and explanatory evidence. The Princess Royal Trust for Carers, London

    Google Scholar 

  17. Richardson A, Plant H, Moore S, Medina J, Cornwall A, Ream E (2007) Developing supportive care for family members of people with lung cancer: a feasibility study. Support Care Cancer 15(11):1259–1269

    Article  PubMed  Google Scholar 

  18. Harding R, Higginson IJ, Leam C et al (2004) Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. J Pain Symptom Manage 27(5):396–408

    Article  PubMed  Google Scholar 

  19. Harding R, Leam C, Pearce A, Taylor E, Higginson IJ (2002) A multi-professional short-term group intervention for informal caregivers of patients using a home palliative care service. J Palliat Care 18(4):275–281

    PubMed  Google Scholar 

  20. Mackereth P, Sylt P, Weinberg A, Campbell G (2005) Chair massage for carers in an acute cancer hospital. Eur J Oncol Nurs 9(2):167–179

    Article  PubMed  Google Scholar 

  21. Skilbeck JK, Payne SA, Ingleton MC, Nolan M, Carey I, Hanson A (2005) An exploration of family carers’ experience of respite services in one specialist palliative care unit. Palliat Med 19(8):610–618

    Article  PubMed  CAS  Google Scholar 

  22. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M (2008) Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 337:a1655

    Article  PubMed  Google Scholar 

  23. Morris SM, Thomas C (2002) The need to know: informal carers and information. Eur J Cancer Care (Engl) 11(3):183–187

    Article  CAS  Google Scholar 

  24. Bee PE, Barnes P, Luker KA (2009) A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs 18(10):1379–1393

    Article  PubMed  Google Scholar 

  25. Department of Health (2000) NHS Cancer Plan. A plan for investment. A plan for reform. Document type: Publication

  26. Gilbert E, Ussher JM, Perz J, Hobbs K, Kirsten L (2010) Positive and negative interactions with health professionals: a qualitative investigation of the experiences of informal cancer carers. Cancer Nurs 33:E1–E9

    Article  PubMed  Google Scholar 

  27. Brown MA, Stetz K (1999) The labor of caregiving: a theoretical model of caregiving during potentially fatal illness. Qual Health Res 9(2):182–197

    Article  PubMed  CAS  Google Scholar 

  28. Zapart S, Kenny P, Hall J, Servis B, Wiley S (2007) Home-based palliative care in Sydney, Australia: the carer’s perspective on the provision of informal care. Health Soc Care Community 15(2):97–107

    PubMed  Google Scholar 

  29. Greenwood N, Mackenzie A, Wilson N, Cloud G (2009) Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge. Int J Nurs Stud 46(8):1122–1133

    Article  PubMed  Google Scholar 

  30. Soothill K, Morris SM, Harman JC, Francis B, Thomas C, McIllmurray MB (2001) Informal carers of cancer patients: what are their unmet psychosocial needs? Health Soc Care Community 9(6):464–475

    Article  PubMed  CAS  Google Scholar 

Download references

Acknowledgements

This study was supported by a grant Cancer Research UK (08/H0807/51). We thank our funders and also our participants for taking time from their caregiving and sharing their experiences. We would also like to thank all health professionals who assisted us in recruitment. Their assistance and goodwill was invaluable in achieving our goal.

Author disclosure statement

We declare that we have no conflict of interest.

Author information

Authors and Affiliations

  1. Department of Palliative Care Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, SE5 9PJ, London, UK

    R. Harding, E. Epiphaniou & I. J. Higginson

  2. Guy’s & St Thomas’ NHS Foundation Trust, London, UK

    D. Hamilton, S. Bridger, V. Robinson, R. George & T. Beynon

Authors
  1. R. Harding
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. E. Epiphaniou
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. D. Hamilton
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. S. Bridger
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. V. Robinson
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. R. George
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. T. Beynon
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. I. J. Higginson
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to E. Epiphaniou.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Harding, R., Epiphaniou, E., Hamilton, D. et al. What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Support Care Cancer 20, 1975–1982 (2012). https://doi.org/10.1007/s00520-011-1300-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-011-1300-z

Keywords

Search

Navigation