Relatives in end-of-life care - Part 1: A systematic review of the literature the five last years, January 1999-February 2004

Journal of Clinical Nursing

Volumn 15, Issue 9, 2006, Pages 1158-1169

  Andershed, Birgitta ^a,b  

^a ÖREBRO UNIVERSITY   (Sweden)

^b Ersta Skondal University College   (Sweden)

Author keywords

Family; Hospice; Literature review; Palliative care; Relative; Terminal care

Indexed keywords

ADAPTIVE BEHAVIOR; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; COST OF ILLNESS; FAMILY; HEALTH EDUCATION; HEALTH PERSONNEL ATTITUDE; HEALTH SERVICE; HUMAN; HUMAN RELATION; INTERPERSONAL COMMUNICATION; MENTAL STRESS; METHODOLOGY; NURSING METHODOLOGY RESEARCH; ORGANIZATION AND MANAGEMENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; REVIEW; ROLE PLAYING; SOCIAL SUPPORT; TERMINAL CARE; TRUST;

ADAPTATION, PSYCHOLOGICAL; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; COMMUNICATION; COST OF ILLNESS; FAMILY; HEALTH EDUCATION; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; NURSING METHODOLOGY RESEARCH; PROFESSIONAL-FAMILY RELATIONS; QUALITATIVE RESEARCH; RESEARCH DESIGN; ROLE; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; TERMINAL CARE; TRUST;

EID: 33747047226     PISSN: 09621067     EISSN: 13652702     Source Type: Journal    
DOI: 10.1111/j.1365-2702.2006.01473.x     Document Type: Review

References (110)

1. Adelbratt S & Strang P (2000) Death anxiety in brain tumour patients and their spouses. Palliative Medicine 14, 499-507.
2. Andershed B (1999) The Role of the Family Carer at the End-of-life. A Literature Review (in Swedish). National Board of Health and Welfare, Stockholm.
3. Andershed B (2004) Palliative care. Family members in the context of palliative care. In The Needs of Family Members. Nursing as an Academic Subject (Östlinder G ed.) Swedish Society of Nursing, Stockholm, pp. 59-63.
4. Andershed B & Ternestedt B-M (1999) Involvement of relatives in the care of the dying in different care cultures. Development of a theoretical understanding. Nursing Science Quarterly 12, 45-51.
5. Andershed B & Ternestedt B-M (2000) Being a close relative of a dying person. Development of the concepts: involvement in the light and in the dark. Cancer Nursing 23, 151-159.
6. Andershed B & Ternestedt B-M (2001) Development of a theoretical framework of understanding about relatives' involvement in palliative care. Journal of Advanced Nursing 34, 554-562.
7. Aranda S & Hayman-White K (2001) Home caregivers of the person with advanced cancer. An Australian perspective. Cancer Nursing 24, 300-307.
8. Aranda S & Peerson A (2001) Caregiving in advanced cancer: lay decision making. Journal of Palliative Care 17, 270-276.
9. Baer WM & Hanson LC (2000) Families perception of the added value of hospice in the nursing home. Journal of the American Geriatirics Society 48, 879-882.
10. Baker R, Wu AW, Teno JM, Kreling B, Damiano AM, Rubin HR, Roach MJ, Wenger NS, Phillips RS, Desbiens NA, Connors AF, Knaus W & Lynn J (2000) Family satisfaction with end-of-life care in seriously ill hospitalised adults. Journal of the American Geriatirics Society 48, S61-S69.
11. Bolmsjö I & Hermerén G (2001) Interviews with patients, family and caregivers in amyotrophic lateral sclerosis: comparing needs. Journal of Palliative Care 17, 236-240.
12. Bolmsjö I & Hermerén G (2003) Conflicts of interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis. Nursing Ethics 10, 186-198.
13. Borneman T, Chu DZJ, Wagman L, Ferell B, Juarez G, McCahill LE & Uman G (2003) Concerns of family caregivers of patients with cancer facing palliative surgery for advanced malignancies. Oncology Nursing Forum 30, 997-1005.
14. Brazil K, Bédard M, Willison K & Hode M (2003) Caregiving and its impact on families of the terminally ill. Aging & Mental Health 7, 376-382.
15. Brink PJ & Wood MJ (1998) Advanced Design in Nursing Research. Saga Publications, Inc, Thousand Oaks.
16. Brobäck G & Berterö C (2003) How next of kin experience palliative care of relatives at home. European Journal of Cancer Care 12, 339-346.
17. Cameron JI, France R-L, Cheung AM & Stewart DE (2002) Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94, 521-527.
18. Carter PA (2001) A not-so-silent cry of help. Older female cancer caregivers' need for information. Journal of Holistic Nursing 19, 271-284.
19. Chan CWH & Chang AM (2000) Experience of palliative home care according to caregivers and patients ages in Hong Kong Chinese people. Oncology Nursing Forum 27, 1601-1605.
20. Christakis NA & Iwashyna TJ (2003) The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Social Science & Medicine 57, 465-475.
21. Davies BD, Cowley SA & Ryland RK (1996) The effects of terminal illness on patients and their carers. Journal of Advanced Nursing 23, 512-520.
22. Dawson S & Kristjanson LJ (2003) Mapping the journey: family carers' perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. Journal of Palliative Care 19, 36-42.
23. Dunne K & Sullivan K (2000) Family experiences of palliative care in the hospital setting. International Journal of Palliative Nursing 6, 170-178.
24. Emanuel EJ, Fairclough DL, Slutsman J, Albert H, Baldwin D & Emanuel LL (1999) Assistance from family members, friends, pain care givers and volunteers in the care of terminally ill patients. The New England Journal of Medicine 23, 956-963.
25. Enyert G & Burman ME (1999) A qualitative study of self-transcendence in caregivers of terminally ill patients. American Journal of Hospice & Palliative Care 16, 45-462.
26. Fainsinger RL, Nunez-Olarte JM & Demoissac DM (2003) The cultural differences in perceived value of disclosure and cognition: Spain and Canada. Journal of Palliative Care 19, 43-48.
27. Ferell BR (1999) Emotional problems in palliative care: the family. In Oxford Textbook of Palliative Medicine (Doyle D, Hanks GWC & MacDonal N eds). Oxford University Press, Oxford, pp. 909-917.
28. Friedrichsen MJ, Strang PM & Carlsson ME (2001) Receiving bad news: experiences of family members. Journal of Palliative Care 17, 241-247.
29. Gagnon P, Charbonneau C, Allard P, Soulard C, Dumont S & Fillion L (2002) Delirium in advanced cancer: a psychoeducational intervention for family caregivers. Journal of Palliative Care 18, 253-261.
30. Gelfand DE, Balcazar H, Parzuchowski J & Lenox S (2001) Mexicans and care for the terminally ill: family, hospice and the church. American Journal of Hospice & Palliative Care 18, 391-396.
31. Gessert CE, Forbes S & Bern-Klug M (2000-2001) Planning end-oflife care for patients with dementia: roles of families and health professional. Omega, Journal of Death and Dying 42, 273-291.
32. Goldstein NE, Concato J, Fried TR, Kasl SV & Johnson-Hurzeler R (2004) Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care 20, 38-43.
33. de Graaff FM & Francke AL (2003) Home care for terminally ill Turks and Moroccans and factors influencing ease of access and use of service. International Journal of Nursing Studies 40, 797-805.
34. Grande GE & Todd CJ (2000) Why are trials in palliative care so difficult? Palliative Medicine 14, 69-74.
35. Grande GE, Todd CJ & Barclay SIG (1997) Support needs in the last year of life: patient and carer dilemmas. Palliative Medicine 11, 202-208.
36. Grbich C, Parker D & Maddocks I (2001) The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal of Palliative Care 17, 30-36.
37. Hanson E (2004) Supporting families of terminally ill persons. In Palliative Care Nursing. Principles and Evidence for Practice (Payne S, Seymore J & Ingleton C eds). Open University Press, Berkshire, pp. 329-350.
38. 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. Journal of Palliative Care 18, 275-281.
39. Harrington V, Lackey NR & Gates MF (1996) Needs of caregivers of clinical and hospice cancer patients. Cancer Nursing 19, 118-125.
40. Hawkins C (2000) Anorexia and anxiety in advanced malignancy: the relative problem. Journal of Human Nutrition and Dietetics 13, 113-117.
41. Hinton J (1999) The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliative Medicine 13, 19-35.
42. Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing 10, 58-64.
43. Hudson P, Aranda S & McMurray N (2002) Intervention development for enhanced lay palliative caregiver support - the use of focus groups. European Journal of Cancer Care 11, 262-270.
44. Hull MM (1992) Coping strategies of family caregivers in hospice homecare. Oncology Nursing Forum 19, 1179-1187.
45. Jarrett NJ, Payne SA & Wiles RA (1999) Terminally ill patients' and lay-carers' perceptions and experiences of community-based services. Journal of Advanced Nursing 29, 476-483.
46. Keefe FJ, Ahles TA, Porter LS, Sutton LM, McBride CM, Pope MS, McKinstry ET, Furstenberg CP, Dalton J & Baucom DH (2003) The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life. Pain 103, 157-162.
47. Keegan O, Mcgee H, Hogan M, Kunin H, O'Brien S & O'Siorain L (2001) Relatives views of health care in the last year of life. International Journal of Palliative Nursing 7, 449-456.
48. King N, Bell D & Thomas K (2004) Family carers' experiences of out-of-hours community palliative care: a qualitative study. International Journal of Palliative Nursing 10, 76-83.
49. Koffman J & Higginson IJ (2001) Account of carers' satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease. Palliative Medicine 15, 337-345.
50. Koop PM & Strang VR (2003) The bereavement experience following home-based family caregiving for persons with advanced cancer. Clinical Nursing Research 12, 127-144.
51. Kristjanson LJ & Aoun S (2004) Palliative care for families: remembering the hidden patients. Canadian Journal of Psychiatry 49, 359-365.
52. Kristjanson LJ & Ashcroft T (1994) The family's cancer journey: a literature review. Cancer Nursing 17, 1-7.
53. Kristjanson LJ & White K (2002) Clinical support for families in the palliative care phase of hematologic or oncologic illness. Hematology Oncology Clinics North America 16, 75-762.
54. Kristjanson L, Cousins K, White K, Andrews L, Lewin G, Tinnelly C, Asphar D & Greene R (2004) Evaluation of a night respite community palliative care service. International Journal of Palliative Nursing 10, 84-90.
55. Kvale S (1996) InterWiews. An Introduction to Qualitative Research Interviewing. Saga Publications, Thousand Oaks.
56. Kwan C (2002) Families experiences of the last office of deceased family members in the hospice setting. International Journal of Palliative Nursing 8, 266-275.
57. Lecouturier J, Jaoby A, Bradshaw C, Lovel T & Eccles M (1999) Lay carers' satisfaction with community palliative care: results of a postal survey. Palliative Medicine 13, 275-283.
58. Lin C, Wang P, Lai Y, Lin C, Tsai S & Chen TT (2000) Identifying attitudinal barriers to family management of cancer pain in palliative care in Taiwan. Palliative Medicine 14, 463-470.
59. Loke AY, Liu C-F & Szeto Y (2003) The difficulties faced by informal caregivers of patients with terminal cancer in Hong Kong and the available social support. Cancer Nursing 26, 276-283.
60. Main J (2002) Management of relatives of patients who are dying. Journal of Clinical Nursing 11, 794-801.
61. McGrath P (2001) Caregivers' insights on the dying trajectory in hematology oncology. Cancer Nursing 24, 413-421.
62. McRae S, Caty S, Nelder M & Picard L (2000) Palliative care on Manitoulin Island. Views of family caregivers in remote communities. Canadian Family Physician 46, 1301-1307.
63. Medigovich K, Porock D, Kristjanson L & Smith M (1999) Predictors of family satisfaction with an Australian palliative home care service: a test of discrepancy theory. Journal of Palliative Care 15, 48-56.
64. Mehta A & Ezer H (2003) My love is hurting: the meaning spouses attribute to their loved ones' pain during palliative care. Journal of Palliative Care 19, 87-94.
65. Miceli PJ & Mylod DE (2003) Satisfaction of families using en-of-life care: current successes and challenges in the hospice industry. American Journal of Hospice & Palliative Care 20, 360-370.
66. Miettinen T, Alaviuhkola H & Pietila A (2001) The contribution of 'good' palliative care to quality of life in dying patients: family members perceptions. Journal of Family Nursing 7, 261-280.
67. Milberg A, Strang P, Carlsson M & Börjesson S (2003) Advanced palliative home care: next of kin's perspective. Journal of Palliative Medicine 6, 747-754.
68. Milberg A & Strang P (2004) Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers. Psycho-oncolgy 13, 605-618.
69. Milberg A, Strang P & Jakobsson M (2004) Next of kin's experience of powerlessness and helpfulness in palliative care. Support Care of Cancer 12, 120-128.
70. Mok E, Chan F, Chan V & Yeung E (2002) Perception of empowerment by family caregivers of patients with a terminal illness in Hong Kong. International Journal of Palliative Nursing 8, 137-145.
71. Mok E, Chan F, Chan V & Yeung E (2003) Family experience caring for terminally ill patients with cancer in Hong Kong. Cancer Nursing 26, 267-275.
72. Morita T, Chihara S & Kashiwage T (2002) Family satisfaction with inpatient palliative care in Japan. Palliative Medicine 16, 185-193.
73. Newton M, Bell D, Lambert S & Fearing A (2002) Concerns of hospice patient caregivers. The ABNF Journal Nov/Dec, 140-144.
74. Ogasawara C, Kume Y & Andou M (2003) Family satisfaction with perception of and barriers to terminal care in Japan. Oncology Nursing Forum 30, E100-E105.
75. Oldham L & Kristjanson LJ (2004) Development of a pain management programme for family carers of advanced cancer patients. International Journal of Palliative Nursing 10, 91-99.
76. Payne S, Smith P & Dean S (1999) Identifying the concerns of informal carers in palliative care. Palliative Medicine 13, 37-44.
77. Perreault A, Fothergill-Bourbonnais F & Fiest V (2004) The experience of family members caring for a loved one. International Journal of Palliative Nursing 10, 133-143.
78. Pierce SF (1999) Improving end-of-life care: gathering suggestions from family members. Nursing Forum 34, 5-14.
79. Polit DF & Beck CT (2004) Nursing Research. Principles and Methods. Lippincott Williams & Wilkins, Philadelphia.
80. Powazki RD & Walsh D (1999) Acute care palliative medicine: psychosocial assessment of patients and primary caregivers. Palliative Medicine 13, 367-374.
81. Proot IM, Abu-Saad HH, Crebolder HFJM, Goldsteen M, Luker KA & Widdershoven GAM (2003) Vulnerability of family caregivers in terminal palliative care at home: balancing between burden and capacity. Scandinavian Journal of Caring Sciences 17, 113-121.
82. Rhodes P & Shaw S (1999) Informal care and terminal illness. Health and Social Care in Community 7, 39-50.
83. Ringdal GI, Jordhöy MS & Kaasa S (2002) Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. Journal of Pain and Symptom Management 24, 53-63.
84. Rogers A, Karlsen S & Addington-Hall J (2000) 'All the services were excellent. It is when the human element comes in that things go wrong': dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing 31, 768-774.
85. Rollison B & Carlsson M (2002) Evaluation of advanced home care (AHC). The next-of-kin's experiences. European Journal of Oncology Nursing 6, 100-106.
86. Rose KE (1999) A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing 8, 81-88.
87. Sahlberg-Blom E, Ternestedt B-M & Johansson J-E (2000) Patient participation in decision making at the end of life as sees by a close relative. Nursing Ethics 7, 296-313.
88. Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, Thompson L & Belle SH (2003) End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Meicine 349, 1936-1942.
89. Scott G (2001) A study of family carers of people with a life-threatening illness 2: implications of the needs assessment. International Journal of Palliative Nursing 7, 323-330.
90. Scott G, Whyler N & Grant G (2001) A study of family carers of people with a life-threatening illness 1: the carers needs analysis. International Journal of Palliative Nursing 7, 290-297.
91. Somerville J (2001) Palliative care: the experience of informal carers within the Bangladeshi community. International Journal of Palliative Nursing 7, 240-247.
92. Spruyt O (1999) Community-based palliative care for Bangladeshi patients in east London. Accounts of bereaved carers. Palliative Medicine 13, 119-129.
93. Stajduhar KI (2003) Examining the perspectives of family members involved in the delivery of palliative care at home. Journal Palliative Care 19, 27-35.
94. Stajduhar KI & Davies B (1999) Palliative care at home: reflections on HIV/AIDS family caregiving experiences. Journal of Palliative Care 14, 14-22.
95. Steele LL, Mills B, Long MR & Hagopian GA (2002) Patient and caregiver satisfaction with end-of-life care: does high satisfaction mean high quality of care? American Journal of Hospice & Palliative Care 19, 19-27.
96. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM & Tulsky JA (2000) In search of a good death: observations of patients, families and providers. Annual of Internal Medicine 132, 825-832.
97. Steinhauser KE, Christakis NA, Clipp EC, Mcneilly M, Grambow S, Parker J & Tulsky JA (2001) Preparing for the end of life: preferences of patients, family, physicians and other care providers. Journal of Pain and Symptom Management 22, 727-737.
98. Strang VR & Koop PM (2003) Factors which influence coping: home-based family caregiving of persons with advanced cancer. Journal of Palliative Care 19, 107-114.
99. Strang S & Strang P (2001) Spiritual thoughts, coping and 'sense of coherence' in brain tumour patients and their spouses. Palliative Medicine 15, 127-134.
100. Strang S, Strang P & Ternestedt B-M (2001) Existential support in brain tumour patients and their spouses. Supportive Care in Cancer 9, 625-633.
101. Strang VR, Koop PM & Peden J (2002) The experience of respite during home-based family caregiving for persons with advanced cancer. Journal of Palliative Care 18, 97-104.
102. Teno JM, Casey VA, Welch LC & Edgman-Levitan S (2001) Patients-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. Journal of Pain and Symptom Management 22, 738-751.
103. Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R & Mor V (2004) Family perspectives on end-of-life care at the last place of care. JAMA 291, 88-93.
104. Ternestedt B-M (2004) Good Care in the End of Life. An Evidence-based Literature Review About Elderly Care (in Swedish). National Board of Health and Welfare, Stockholm.
105. Weitzner MA, McMillan SC & Jacobsen PB (1999) Family caregiver quality of life: differences between curative and palliative cancer treatment setting. Journal of Pain and Symptom Management 17, 418-428.
106. Wennman-Larsen A & Tishelman C (2002) Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Sciences 16, 240-247.
107. Wilkes L, White K & O'Riordan L (2000) Empowerment through information: supporting rural families of oncology patients in palliative care. Australian Journal Rural Health 8, 41-46.
108. Wilson SA & Daley BJ (1999) Family perspectives on dying in long-term care settings. Journal of Gerontological Nursing Nov, 19-25.
109. Yates P & Stetz KM (1999) Families awareness of and response to dying. Oncological Nursing Forum 26, 113-120.
110. Yurk R, Morgan D, Franey S, Stebner JB & Lansky D (2002) Understanding the continuum of palliative care for patients and their caregivers. Journal of Pain and Symptom Management 24, 459-470.