Interventions for family caregivers of loved ones on hospice: A literature review with recommendations for clinical practice and future research

Journal of Hospice and Palliative Nursing

Volumn 11, Issue 3, 2009, Pages 167-176

  Lindstrom, Kathryn B ^a   Melnyk, Bernadette Mazurek ^a  

^a ARIZONA STATE UNIVERSITY   (United States)

Author keywords

Caregivers; Hospice; Intervention

Indexed keywords

EID: 70349416510     PISSN: 15222179     EISSN: 15390705     Source Type: Journal    
DOI: 10.1097/NJH.0b013e3181a1acb9     Document Type: Article

References (56)

1. NHPCO. Facts and figures: hospice care in America. 2007. http:// www.nhpco.org/files/public/Statistics-Research/NHPCO-facts-and-figures-Nov2007. pdf. Accessed January 25, 2008.
2. National Family Caregivers Association. The prevalence and economic value of family caregiving. 2003. http://www. thefamilycaregiver.org/who/stats.cfm. Accessed October 20, 2006.
3. AARP Public Policy Institute. Valuing the invaluable: a new look at the economic value of family caregiving. 2007. http://www.nfcacares.org/pdfs/ NewLookattheEconomicValueofFamilyCaregivingIssueBrief.pdf. Accessed October 5, 2007.
4. Howarth G. The social context of death in old age. Working Older People. 2007;11(3):17-20.
5. Jo S, Brazil K, Lohfeld L, Willison K. Caregiving at the end of life: perspectives from spousal caregivers and care recipients. Palliat Support Care. 2007;5:11-17.
6. Cherlin E, Fried T, Prigerson H, Schulman-Green D, Johnson-Hurzeler R, Bradley E. Communication between physicians and family caregivers about care at end of life: when do discussions occur and what is said? J Palliat Med. 2005;8(6):1176-1185.
7. Casarett D, Crowley R, Stevenson C, Xie S, Teno J. Making difficult decisions about hospice enrollment: what do patients and families want to know? J Am Geriatr Soc. 2005;53:249-254.
8. Yates P, Stetz K. Families' awareness of and response to dying. Oncol Nurs Forum. 1999;26(1):113-120.
9. Burton L, Zdaniuk B, Schulz R, Jackson S, Hirsch C. Transitions in spousal caregiving. Gerontologist. 2003;43(2):230-241.
10. Doyle-Brown M. The transitional phase: the closing journey for patients and family caregivers. Am J Hosp Palliat Care. 2000; 17(5):354-357.
11. Schulman-Green D, McCorkle R, Curry L, Cherlin E, Johnson-Hurzeler R, Bradley E. At the crossroads: making the transition to hospice. Palliat Support Care. 2004;2:351-360.
12. Doorenbos A, Given B, Given C, et al. The influence of end-of-life cancer care on caregivers. Res Nurs Health. 2007;30:270-281.
13. Lawton M, Moss M, Hoffman C, Perkinson M. Two transitions in daughters' caregiving careers. Gerontologist. 2000;40(4):437-448.
14. Waldrop D, Kramer B, Skretny J, Milch R, Finn W. Final transitions: family caregiving at the end of life. J Palliat Med. 2005;8(3):623-638.
15. Salmon J, Kwak J, Acquaviva K, Brandt K, Egan K. Transformative aspects of caregiving at life's end. J Pain Symptom Manage. 2005;29(2):121-129.
16. Parker Oliver D, Demiris G, Day M, Courtney K, Porock D. Telehospice support for elder caregivers of hospice patients: two case studies. J Palliat Med. 2006;9(2):264-267.
17. McMillan S, Small B, Weitzner M, et al. Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer. 2006;106(1):214-222.
18. MacDonald G. Massage as a respite intervention for primary caregivers. Am J Hosp Palliat Care. 1998;15(1):43-47.
19. McMillan S. Quality of life of primary caregivers of hospice patients with cancer. Cancer Pract. 1996;4(4):191-198.
20. Walsh S, Schmidt L. Telephone support for caregivers of patients with cancer. Cancer Nurs. 2003;26(6):448-453.
21. Bellg A, Borrelli B, Resnick B, et al. Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH behavior change consortium. Health Psychol. 2004;23(5):443-451.
22. Sidani S, Braden C. Evaluating Nursing Interventions: A Theory-Driven Approach. Thousand Oaks, CA: SAGE Publications; 1998.
23. Mark B, Hughes L, Jones C. The role of theory in improving patient safety and quality health care. Nurs Outlook. 2004;52:11-16.
24. Werth J, Blevins D. Public policy and end-of-life care. Am Behav Sci. 2002;46(3):401-417.
25. Wyatt G, Ogle K, Given B. Access to hospice: a perspective from the bereaved. J Palliat Med. 2000;3:433-440.
26. Gochman D, Bonham G. The social structure of the hospice decision. Hosp J. 1990;6(1):15-36.
27. Fine P, Davis M. Hospice: comprehensive care at the end of life. Anesthesiol Clin North Am. 2006;24:181-204.
28. Steele L, Mills B, Long M, Hagopian G. Patient and caregiver satisfaction with end-of-life care: does high satisfaction mean high quality of care? Am J Hosp Palliat Care. 2002;19(1):19-27.
29. NHPCO. National Hospice and Palliative Care Organization's 2005 facts and figures. 2005. http://nhpco.org. Accessed November 22, 2006.
30. Sechrest L. Validity of measures is no simple matter. Health Serv Res. 2005;40(5):1584-1604.
31. Chentsova-Dutton Y, Shucter S, Hutchin S, Strause L, Burns K, Zisook S. The psychological and physical health of hospice caregivers. Ann Clin Psychiatry. 2000;12(1):19-27.
32. Valdimarsdottir U, Helgason A, Furst C, 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.
33. Maxwe lll S, Delaney H. Designing Experiments and Analyzing Data: A Model Comparison Perspective. 2nd ed. Mahwah, NJ: Lawrence Erlbaum Associates; 2004.
34. Kazdin A. Research Design in Clinical Psychology. 4th ed. Boston, MA: Allyn and Bacon; 2003.
35. Melnyk B, Fineout-Overholt E. Evidence-Based Practice in Nursing and Healthcare. Philadelphia, PA: Lippincott, Williams & Wilkins; 2005.
36. Chentsova-Dutton Y, Shucter S, Hutchin S, et al. Depression and grief reactions in hospice caregivers: from pre-death to 1 year afterwards. J Affect Disord. 2002;69:53-60.
37. Li H, Melnyk BM, McCann R, et al. Creating avenues for relative empowerment (CARE): a pilot test of an intervention to improve outcomes of hospitalized elders and family caregivers. Res Nurs Health. 2003;26:284-299.
38. Johnson J, Fieler V, Jones L, Walasowicz G, Mitchell M. Self-regulation Theory: Applying Theory to Practice. Pittsburgh, PA: Oncology Nursing Press; 1997.
39. Schumacher K, Stewart B, Archbold P, Caparro M, Mutale F, Agrawal S. Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncol Nurs Forum. 2008;35(1):49-56.
40. Hudson P, Aranda S, Hayman-White K. A psycho-educational intervention for family caregivers of patients receiving palliative care: a randomized controlled trial. J Pain Symptom Manage. 2005;30(4):329-341.
41. Hebert R, Schulz R, Copeland V, Arnold R. 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.
42. Schulz R, Hebert R, Boerner K. Bereavement after caregiving. Geriatrics. 2008;63(1):20-22.
43. Coon D, Rubert M, Solano N, et al. Well-being, appraisal, and coping in Latina and Caucasian female dementia caregivers: findings from the REACH study. Aging Mental Health. 2004;8(4): 330-345.
44. Coon D, Thompson L, Steffen A, Sorocco K, Gallagher-Thompson D. Anger and depression management: psychoeducational skill training interventions for women caregivers of a relative with dementia. Gerontologist. 2003;43(5):678-689.
45. Schulz R, Burgio L, Burns R, et al. Resources for enhancing Alzheimer's caregiver health (REACH): overview, site-specific outcomes, and future directions. Gerontologist. 2003;43(4): 514-520.
46. Schulz R, Gallagher-Thompson D, Haley W, Czaja S. Understanding the interventions process: a theoretical conceptual framework for intervention approaches to caregiving. In: Schulz R, ed. Handbook on Dementia Caregiving: Evidence-Based Interventions for Family Caregivers. New York, NY: Springer Publishing Company; 2000.
47. Hebert R, 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(3):683-693.
48. Harding R, Higginson I. What is the best way to help care-givers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med. 2003; 17:63-74.
49. Sorenson S, Pinquart M, Habil D, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356-372.
50. Johnson J. Self-regulation theory and coping with physical illness. Res Nurs Health. 1999;22:435-448.
51. Schumacher K, Beck C, Marren J. Family caregivers: caring for older adults, working with their families. Am J Nurs. 2006;106(8): 40-53.
52. Burr W, Leigh G, Day R, Constantine J. Symbolic interaction and the family. In: Burr W, Hill R, Nye F, Reiss I, eds. Contemporary Theories: About the Family. Vol 2. New York, NY: The Free Press; 1979:42-111.
53. Gallagher-Thompson D, Coon D. Evidence-based psychological treatments for distress in family caregivers of older adults. Psychol Aging. 2007;22(1):37-51.
54. Kubler Ross E. On Death and Dying. New York, NY: Macmillan; 1969.
55. Teschendorf B, Schwartz C, Ferrans C, O'Mara A, Novotny P, Sloan J. Caregiver role stress: when families become providers. Cancer Control. 2007;14(2):183-189.
56. Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476-2482.