Preparing family members for the death of their loved one with cancer: A review of literature and direction for future research

Journal of Hospice and Palliative Nursing

Volumn 15, Issue 2, 2013, Pages

  Loke, Alice Yuen ^a   Li, Qiuping ^a,b   Man, Leung Siu ^c  

^a HONG KONG POLYTECHNIC UNIVERSITY   (Hong Kong)

^b JIANGNAN UNIVERSITY   (China)

^c Caritas Medical Centre Hong Kong   (Hong Kong)

Author keywords

caring for the dying; family caregiver; supportive care

Indexed keywords

EID: 84875146748     PISSN: 15222179     EISSN: 15390705     Source Type: Journal    
DOI: 10.1097/NJH.0b013e3182860650     Document Type: Review

References (51)

1. Buckman R. Communication skills in palliative careVa practical guide. Neurol Clin. 2001;19(4):989-1004.
2. Lynn J. Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA. 2001;285:925-932.
3. Barry L, Prigerson HG. Perspectives on preparedness for a death among bereaved persons. Conn Med. 2002;66:691-696.
4. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291:88-93.
5. Hebert RS, Dang Q, Schulz R. Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH study. J Palliat Med. 2006;9:683-693.
6. Barry L, Kasl SV, Prigerson HG. Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death. Am J Geriatr Psychiatry. 2002;10: 447-457.
7. Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2001;15:1-18.
8. Valdimarsdottir U, Helgason AR, Adolfsson J, Steineck G. Awareness of husband's impending death from cancer and long-term anxiety in widowhood: a nationwide follow up. Palliat Med. 2004;18:432-443.
9. Hebert RS, Prigerson HG, Schulz R, Arnold RM. Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research. J Palliat Med. 2006;9(5): 1164-1171.
10. Maciejewski PK, Zhang B, Block SD, Prigerson HG. An empirical examination of the stage theory of grief. JAMA. 2007;297:716-723.
11. Parkes CM. Bereavement: Studies of Grief in Adult Life. 3rd ed. New York: Routledge; 1996.
12. Stroebe W, Schut H. Risk factors in bereavement outcome: a methodological and empirical review. In: Stroebe MS, Hansson RO, Stroebe W, Schut H, eds. Handbook of Bereavement Research: Consequences, Coping, and Care Washington, DC: American Psychological Association; 2001.
13. Sorensen S, Pinquart M. Racial and ethnic differences in the relationship of caregiving stressors, resources, and sociodemographic variables to caregiver depression and perceived physical health. Aging Ment Health. 2005;9:482-495.
14. Chow A, Chan CLW, Ho SMY, Tse DMW, Suen MHP, Yuen KFK. Qualitative study of Chinese widows in Hong Kong: insights for psycho-social care in hospice settings. PalliatMed. 2006;20:513-520.
15. Carr D, Nesse RM, Wortman C. Late Life Widowhood in the United States. New York: Springer Publishing Company; 2005.
16. Byrne G, Raphael B. The psychological symptoms of conjugal bereavement in elderly men over the first 13 months. Int J Geriatr Psychiatry. 1997;12:241-251.
17. Chen J, Bierhals AJ, Prigerson HG, Ksal SV, Mazure CM, Jacobs S. Gender differences in the effects of bereavement-related psychological distress in health outcomes. PsycholMed. 1999;29:367-380.
18. Chow A, Koo BWS, Koo EWK, Lam AYY. Turning grief into good separation: bereavement service in Hong Kong. In: Richard R, Chan CLW, eds. Psychosocial Oncology & Palliative Care in Hong Kong.HongKong:Hong Kong University Press; 2000.
19. Martikainen P, Valkonen T. Mortality after death of spouse in relation to duration of bereavement in Finland. J Epidemiol Community Health. 1996;50:264-268.
20. Christakis N, Allison PD. Mortality after the hospitalization of a spouse. N Engl J Med. 2006;354:719-730.
21. Clayton JM, Butow PN, Tattersall MH. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer. 2005;103: 1957-1964.
22. Brashers D, Neidig JL, Russell JA, et al. The medical, personal, and social causes of uncertainty in HIV illness. Issues Ment Health Nurs. 2003;24:297-522.
23. Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3):727-737.
24. Hebert RS, Schulz R, Copeland VC, Arnold RM. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manage. 2009;37(1):3-12.
25. Hauksdottir A, Valdimarsdottir U, Furst CJ, Onelov E, Steineck G. Health careYrelated predictors of husbands' preparedness for the death of a wife to cancerVa population-based follow-up. Ann Oncol. 2010;21:354-361.
26. Francke AL, Willems DL. Terminal patients' awareness of impending death: the impact upon requesting adequate care. Cancer Nurs. 2005;28(3):241-247.
27. Goldsteen M,Houtepan R, Proot IM, Abu-SaadHH,Spreeuwenberg C, Widdershoven G. What is a good death? Terminally ill patients dealing with normative expectations around death and dying. Patient Educ Couns. 2006;64:378-386.
28. Hudson P. How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? J Palliat Med. 2006;9(3):694-703.
29. Curtis J, Patrick D, Engelberg R, Norris K, Asp C, Byock M. A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002;24:17-30.
30. Heyland DK, Dodek P, Pocker G, et al. What matters most in end-of-life care: perceptions or seriously ill patients and their family members. CMAJ. 2006;174(5):1-8.
31. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians and other care providers. JAMA. 2000; 19(284):2476-2482.
32. Hebert RS, Schulz R, Copeland V, Arnold RM. What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. J Palliat Med. 2008;11(3):476-483.
33. Mok E, Chan F, Chan V, Yeung E. Family experience caring for terminally ill patients with cancer in Hong Kong. Cancer Nurs. 2003;26:267-275.
34. Stajuduhar KI, Martin WL, Barwich D, Fyles G. Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nurs. 2008;31(1):77-85.
35. SteinhauserKE, Clipp EC,McNeillyM, ChristakisNA,McIntyreLM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825-832.
36. Clayton JM, Hancock K, Parker S, et al. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psycho-oncology. 2008;17:641-659.
37. Taylor EJ. Prevalence and associated factors of spiritual needs among patients with cancer and family caregivers. Oncol Nurs Forum. 2006;33(4):729-735.
38. Csikai EL. Bereaved hospice caregivers' perceptions of the end-of-life care communication process and the involvement of health care professionals. j Palliat Med. 2006;9:1300-1309.
39. de Araujo MMT, da Silva MJP, Francisco MCPB. Nursing the dying: essential elements in the care of terminally ill patients. Int Nus Rev. 2004;51:149-158.
40. Kehl KA, Kirchhoff KT, Kramer BJ, Cyndi Hovland-Scafe C. Challenges facing families at the End of Life in three settings. J Soc Work End Life Palliat Care. 2009;5(3 &):144-168.
41. Chan C, Chow AYM. Our memorial quilt: recollections of observations from clinical practice on death, dying and bereavement. In: Chan CLW, Chow AYM, eds. Death, Dying and Bereavement: A Hong Kong Chinese Experience. Hong Kong: University of Hong Kong; 2006.
42. Haley W. Family caregivers of elderly patients with cancer: understanding and minimizing the burden of care. J Support Oncol. 2003;1:25-29.
43. MishelMH.Uncertainty in illness. Image JNurs Res. 1988;20:225-232.
44. Brashers DE. Communication and uncertainty management. Journal of Community. 2001;51:477-497.
45. Hines SC. Coping with uncertainties in advance care planning. J Community. 2001;51:498-513.
46. Waldrop DP, Milch RA, Skretny JA. Understanding family responses to life-limiting illness: in-depth interviews with hospice patients and their family members. J Palliat Care. 2005;21:88-96.
47. Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc. 1997;45:1339-1344.
48. Fried TR, Bradley EH, O'Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc. 2003;51:1398-1403.
49. Aranda SK, Kayman-White K. Home caregivers of the person with advanced cancer. Cancer Nurs. 2001;24:300-306.
50. Kwak J, Salmon JR, Acquaviva KD, Brandt K, Egan KA, Benefits of training family caregivers on experiences of closure during end-of-life care. J Pain Symptom Manage. 2007;33:434-445.
51. Kehl KA, Kirchhoff KT, Finster MP, Cleary JF. Materials to prepare hospice families for dying in the home. J Palliat Med. 2008;11:969-972.