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 ,Revised 12 September 2008 ,Accepted 21 November 2008.

REFERENCES 

  1. Andershed B . Relatives in end-of-life care-part 1: a systemic review of the literature the five last years, January 1999–February 2004 . Journal of Clinical Nursing . 2006;15:1158–1169
  2. Andrews S . Caregiver burden and symptom distress in people with cancer receiving hospice care . Oncology Nursing Forum . 2001;28:1469–1474
  3. Azoulay E , Pochard F . Communication with family members of patients dying in the intensive care unit . Current Opinion Critical Care . 2003;9:545–550
  4. Chang S , Lee S . A study on burdens of caregivers who have terminal cancer patients . Korean Journal of Public Health . 2000;26:29–37
  5. Choi S . A study on the old and death . Social Science Research . 2004;7:79–106
  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. Copnell B . Death in the pediatric ICU: caring for children and families at the end of life . Critical Care Nursing Clinic of North America . 2005;17:349–360
  8. Dockter B , Black D , Hovell M , Engleberg D , Amick T , Neimier D , et al.   Families and intensive care nurses: comparison of perceptions . Patient Education Counseling . 1998;12:29–36
  9. 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
  10. Eom A . Patients' perception and satisfaction with nursing care in Korea . The Journal of Korean Academic Society of Adults Nursing . 2001;13:581–590
  11. Fox-Wasylyshyn S , El-Masri M , Williamson K . Family perceptions of nurses' roles toward family members of critically ill patients: A descriptive study . Heart & Lung . 2005;34:335–344
  12. 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
  13. 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
  14. Ha, S. (2004). A study on factors influencing the caregiver's quality of life. Unpublished master's thesis, Ehwa Woman's University, Seoul, Korea.
  15. 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
  16. Heyland D , Rocker G , O'Callaghan C , Dodek P , Cook D . Dying in ICU: Perspectives of family members . Chest . 2003;124:392–397
  17. 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
  18. Hunt C . Concepts in caregiver research . Journal of Nursing Scholarship . 2003;First quarter:27–32
  19. Hwang, H. (2000). The lived experiences of the inpatients's families in the intensive care units. Unpublished master's thesis, Gyunghee University, Seoul, Korea.
  20. 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
  21. Kim C . Nursing needs among family members of hospice patients who were in a hospital . Hospice . 1998;3:13–24
  22. Kim, S. (1992). A phenomenological study on the death-related problems perceived by a dying patient's family. Unpublished master's thesis, Ewha Woman's University, Seoul, Korea.
  23. Kirchhoff K , Song M , Kehl K . Caring for the family of the critically ill patient . Critical Care Clinic . 2004;20:446–453
  24. Kramer B . Gain in the caregiving experience: Where are we? What next? . The Gerontologist . 1997;37:218–232
  25. Lee, J. (2001). Stress and burden of family caregiver in caregiving of terminal patients. Unpublished master's thesis, Chunnam University, Gwangju, Korea.
  26. Lee, J. (2005). Comprehension of family regarding death of hospice patient. Unpublished master's thesis, Chunnam University, Seoul, Korea.
  27. 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
  28. 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
  29. Main J . Management of relatives of patients who are dying . Journal of Clinical Nursing . 2002;11:794–801
  30. Mangan P , Taylor K , Yabroff K , Fleming D , Ingham J . Caregiving near the end of life: Unmet needs and potential solutions . Palliative and Supportive Care . 2003;1:247–259
  31. McIntyre M . Understanding living with dying . Cancer Nursing . 1997;93:19–25
  32. Newton M , Bell D , Lambert S , Fearing A . Concerns of hospice patient caregivers . The ABNF Journal . 2002;13:140–144
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. Steele R , Fitch M . Needs of family caregivers of patients receiving home hospice care for cancer . Oncology Nursing Forum . 1996;23:823–828
  40. Steele R , Fitch M . Coping strategies of family caregivers of home hospice patients with cancer . Oncology Nursing Forum . 1996;23:955–960
  41. Sung, K. (1996). A research on the family of dying patient for the development of the hospice program. Unpublished master's thesis, Chung-Ang University, Seoul, Korea.
  42. Thielemann P . Educational needs of home caregivers of terminally ill patients: Literature review . American Journal of Hospital Palliative Care . 2000;17:253–257
  43. Verhaeghe S , Defloor T , Zuuren F , Duijnstee M , Grypdonck M . The needs and experiences of family members of adult patients in an intensive care unit: A review of the literature . Journal of Clinical Nursing . 2005;14:501–509
  44. Wagner D . Family needs of chronic hemodialysis patients: A comparison of perceptions of nurses and families . ANNA Journal . 1996;23:19–26

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