Asian Nursing Research
Volume 2, Issue 4 , Pages 223-234, December 2008

Family Experiences in End-of-Life Care: A Literature Review

  • Ji-Soo Yoo, PhD, RN

      Affiliations

    • Professor, Nursing Policy Research Institute, College of Nursing, Yonsei University, Seoul, Korea
    • ,
  • JuHee Lee, PhD, RN

      Affiliations

    • Assistant Professor, Nursing Policy Research Institute, College of Nursing, Yonsei University, Seoul, Korea
    • ,
  • Soo Jung Chang, RN, MSN

      Affiliations

    • Ph.D. candidate, Department of Nursing, Graduate school, Yonsei University
    • Corresponding Author InformationCorrespondence to: Soo Jung Chang, RN, MSN, PO Box 448–982, Gangnam village 104–1501, Sungbokdong, Yongin, Gyunggido, Korea

Received 27 August 2008; received in revised form 12 September 2008; accepted 21 November 2008.

Article Outline

Purpose

The purpose of this study was to summarize and analyze families' experiences of end-of-life care by conducting a systematic review of peer reviewed journals both in Korea and abroad.

Background

Families play an increasingly important role in care and medical treatment, acting as caregivers or decision makers rather than just being passive observers. It is necessary to understand the experiences of family members in order to provide appropriate care for them.

Methods

A systematic search of the literature was performed using the Cumulative Index for Nursing and Allied Health Literature (CINAHL) and the Korea Education & Research Information Service (KERIS) for the period of January 1990 through to December 2006. A total of 35 studies met the inclusion criteria.

Results

Seventeen studies used a quantitative design, while 18 studies used qualitative methods. Quantitative studies reported that the family's quality of life was relatively low when the patient was in need of high medical/nursing services. The perceived burden levels were moderately high, and depression levels were high among family caregivers. Various concepts emerged from the 18 qualitative studies, including psychological issues, physical problems, burdens, needs and interpersonal relationships.

Conclusion

This study found that most previous research findings were focused on negative and neutral experiences. A few studies identified positive experiences. Based on the study results, we suggest that nurses need to be more aware of the experiences of patients' families and their potential needs.

Key Words:  family , literature review , terminal care

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Appendix: Study List Met the Inclusion Criteria 

  1. Andershed B , Ternestedt BM . Involvement of relatives in care of the dying in different care cultures: development of a theoretical understanding . Nursing Science Quarterly . 1999;12:45–51
  2. Andrews S . Caregiver burden and symptom distress in people with cancer receiving hospice care . Oncology Nursing Forum . 2001;28:1469–1474
  3. Beach D . Caregiver discourse: perceptions of illness-related dialogue . The Hospice Journal . 1995;10:13–25
  4. Brobäck G , Berterö C . How next of kin experience palliative care of relatives at home . European Journal of Cancer Care . 2003;12:339–346
  5. Chang S , Lee S . A study on burdens of caregivers who have terminal cancer patients . Korean Journal of Public Health . 2000;26:29–37
  6. Chung B , Kim K . Nursing needs and family burdens of caregivers who have had terminal cancer patients . Journal of Nursing Science of Kyungpook . 2003;7:63–82
  7. Enyert G , Burm M . A qualitative study of self-transcendence in caregivers of terminally ill patients . American Journal of Hospice & Palliative Care . 1999;16:455–462
  8. Given B , Wyatt G , Given C , Gift A , Sherwood P , DeVoss D , et al.   Burden and depression among caregivers of patients with cancer at the end- of-life . Oncology Nursing Forum . 2005;31:1105–1117
  9. Goldstein N , Concato J , Fried T , Kasl S , Johnson-Hurzeler R , Bradley E . Factors associated with caregiver burden among caregivers of terminally ill patients with cancer . Journal of Palliative Care . 2004;20:38–43
  10. Grbich C , Parker D , Maddocks I . The emotions and coping strategies of caregivers of family members with a terminal cancer . Journal of Palliative Care . 2001;17:30–36
  11. Heyland D , Dodek P , Rocker G , Groll D , Gafni A , Pichora D , et al.   What matters most in end-of-life care: perceptions of seriously ill patients and their family members . CMAJ . 2006;174:1–9
  12. Holtslander L , Duggleby W , Williams A , Wrighy K . The experience of hope for informal caregivers of palliative patients . Journal of Palliative Care . 2005;21:285–291
  13. Kalnins I . Caring for the terminally ill: Experiences of Latvian family caregivers . International Nursing Review . 2006;53:129–135
  14. Kim C . A comparison of quality of life between the families of cancer patients and those of hospice patients . Journal of Korean Academic Society of Adult Nursing . 1997;9:545–557
  15. Kim C . Nursing needs among family members of hospice patients who were in a hospital . Hospice . 1998;3:13–24
  16. Lee S , Lee E , Huh D , Noh K , Kim H , Kim S , et al.   The study on the medical and nursing service needs of the terminal cancer patients and their caregivers . Korean Academy of Nursing Journal . 1998;28:958–969
  17. Lin W , Tsao C . Information needs of family caregivers of terminal cancer patients in Taiwan . American Journal of Hospice Palliative Care . 2004;21:438–444
  18. Mcskimming S , Hodges M , Super A , Driever M , Schoessler M , Franey SG , et al.   The experience of life-threatening illness: Patients' and their loved ones' perspectives . Journal of Palliative Medicine . 1999;2:173–184
  19. Mok E , Chan F , Chan V , Yeung E . Family experience caring for terminally ill patients with cancer in Hong Kong . Cancer Nursing . 2003;26:267–275
  20. Newton M , Bell D , Lambert S , Fearing A . Concerns of hospice patient caregivers . The ABNF Journal . 2002;13:140–144
  21. Osse B , Verooij-Dassen M , Schadé E , Grol R . Problems experienced by the informal caregivers of cancer patients and their needs for support . Cancer Nursing . 2006;29:378–388
  22. Perreault A , Forhergill-Bourbonnais F , Fiset V . The experience of family members caring for a dying loved one . International Journal of Palliative Nursing . 2004;10:133–143
  23. Redinbaugh E , Baum A , Tarbell S , Arnold R . End-of-life caregiving: What helps family caregivers cope? . Journal of Palliative Medicine . 2003;6:901–909
  24. Ro Y , Kim C . A comparison of quality of life between the families of hospital hospice patients and those of home-based hospice patients . Korean Academy of Nursing Journal . 1998;28:773–785
  25. Rose K . A qualitative analysis of the information needs of informal carers of terminally ill cancer patients . Journal of Clinical Nursing . 1997;8:81–88
  26. Rose K . How informal carers cope with terminal cancer . Nursing Standard . 1999;11:39–42
  27. Sherman D , Ye X , McSherry C , Calabrese M , Parkas V , Gatto M . Spiritual well-being as a dimension of quality of life for patients with advanced cancer and AIDS and their family caregivers: results of a longitudinal study . American Journal of Hospice Palliative Care . 2005;22:349–362
  28. Somerville J . Palliative care: the experience of informal carers within the Bangladeshi community . International Journal of Palliative Nursing . 2001;7:240–247
  29. Stajduhar K . Examining the perspectives of family members involved in the delivery of palliative care at home . Journal of Palliative Care . 2003;19:27–35
  30. Stajduhar K , Davies B . Palliative care at home: reflections on HIV/AIDS family caregiving experiences . Journal of Palliative Care . 1998;14:14–22
  31. Steele R , Fitch M . Needs of family caregivers of patients receiving home hospice care for cancer . Oncology Nursing Forum . 1996;23:823–828
  32. Steele R , Fitch M . Coping strategies of family caregivers of home hospice patients with cancer . Oncology Nursing Forum . 1996;23:955–960
  33. Syren S , Saveman B , Benzein E . Being a family in the midst of living and dying . Journal of Palliative Care . 2006;22:26–64
  34. Waldrop D . Understanding family responses to life-limiting illness: in-depth interviews with hospice patients and their family members . Journal of Palliative Care . 2005;21:88–96

PII: S1976-1317(09)60004-9

doi:10.1016/S1976-1317(09)60004-9

Asian Nursing Research
Volume 2, Issue 4 , Pages 223-234, December 2008

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