Family-centered care: A resource for social work in end-of-life and palliative care

Journal of Social Work in End-of-Life and Palliative Care

Volumn 2, Issue 1, 2006, Pages 13-27

  Kovacs, Pamela J ^a   Bellin, Melissa Hayden ^b   Fauri, David P ^a  

^a VIRGINIA COMMONWEALTH UNIVERSITY   (United States)

^b UNIVERSITY OF MARYLAND   (United States)

Author keywords

Caregiving; End of life care; Family centered care; Hospice; Palliative care; Social work

Indexed keywords

CAREGIVER; FAMILY; HUMAN; MENTAL STRESS; ORGANIZATION AND MANAGEMENT; PALLIATIVE THERAPY; PATIENT CARE; REVIEW; SOCIAL WORK; TERMINAL CARE;

CAREGIVERS; FAMILY; HUMANS; PALLIATIVE CARE; PATIENT-CENTERED CARE; SOCIAL WORK; STRESS, PSYCHOLOGICAL; TERMINAL CARE;

EID: 33746656345     PISSN: 15524256     EISSN: 15524264     Source Type: Journal    
DOI: 10.1300/J457v02n01_03     Document Type: Review

References (44)

1. AAP Committee on Bioethics and Committee on Hospital Care (2000). Palliative care for children. Pediatrics, 106 (2), 351-357.
2. AARP Research Center (2000). Caregiving and long-term care. Available at: http://research.aarp.org/health/fs82caregiving.html. Accessed October 8, 2005.
3. Bern-Klug, M., Kramer, B. J., & Linder, J. F. (2005). All aboard: Advancing the social work research agenda in end-of-life and palliative care. Journal of Social Work in End-of-Life & Palliative Care, 1 (2), 71-86.
4. Brabant, S. (2003). Death in two settings: The acute care facility and hospice. In C. Bryant (Ed.), The handbook of thanatology (Vol 1) (pp. 475-484). Thousand Oaks, CA: Sage Publications.
5. Brazil, K., Bedard, M., Krueger, P., Abernathy, T., Lohfeld, L., & Willison, K. (2005). Service preferences among family caregivers of the terminally ill. Journal of Palliative Medicine, 8(1), 69-78.
6. Brewer, E. J., McPherson, M., Magrab, P. R., & Hutchins, V. L. (1989). Family-centered, community-based, coordinated care for children with special healthcare needs. Pediatrics, 83, 1055-1060.
7. Bruder, M. B. (2000). Family-centered early intervention: Clarifying our values for the new millennium. Topics in Early Childhood Special Education, 20, 105-115.
8. Byock, I., Norris, K., Curtis, J. R., & Patrick, D. L. (2001) Improving end-of-life experience and care in the community: A conceptual framework. Journal of Pain and Symptom Management, 22, 759-772.
9. Children's Hospice International (1993). Standards for hospice care for children. Pediatrie Nursing, 19 (3), 242-243.
10. Christ, C., & Blacker, S. (2005). Setting an agenda for social work in end-of-life and palliative care: An overview of leadership and organizational initiatives. Journal of Social Work in End-of-Life & Palliative Care, 1 (1), 9-22.
11. Chwalisz, K., & Kisler, V. (1995). Perceived stress: A better measure of caregiver burden. Measurement & Evaluation in Counseling & Development, 28 (2), 88-99.
12. Conner, K. A. (2000). Continuing to care: Older Americans and their families in the 21st century. New York: Falmer.
13. Curtis, J. R., & Gordon, D. R. (2001). Managing death in the intensive care unit: The transition from cure to comfort. New York: Oxford University Press.
14. Donelan, K., Hill, C. R., Hoffman, C., Scoles, K., Hollander, P., Feldman, C. L., & Gould, D. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21 (4), 222-231.
15. Fauri, D. J., Ettner, B., & Kovacs, P. J. (2000). Bereavement services in acute care settings. Death Studies, 24, 51-64.
16. Fins, J. J. (1999). Death and dying in the 1990s: Intimations of reality and immortality. Generations: Journal of the American Society on Aging, 23, 81-86.
17. Gilmer, M. J. (2002). Pediatric palliative care: A family-centered model, for critical care. Critical Care Nursing Clinics of North America, 14, 207-214.
18. Ingleton, C., Payne, S., Nolan, M., & Carey, I. (2003). Respite in palliative care: A review and discussion of the literature. Palliative Medicine, 17, 567-575.
19. Institute for Family-Centered Care (n.d.) Family-centered care. Available at: www.familycenteredcare.org. Accessed October 8, 2005.
20. Johnson, B. (1998). Core principles of family-centered healthcare. Advances, 4, 2-4.
21. Karls, J. M. (2002). Person-in-environment system: Its essence and applications. In A. R. Roberts & G. J. Greene (Eds.) Social workers' desk reference (pp. 194-198). New York: Oxford University Press.
22. Kovacs, P. J., & Cagle, J. G. (2005, February). Education: A complex and empowering social work intervention at the end of life. Paper presented at. the Third National Gerontological Social Work Conference, New York.
23. Kovacs, P. J., & Fauri, D. (2003). Formal and informal caregiving at the end. of life. In C. Bryant (Ed.), The handbook of thanatology (Vol 1) (pp. 502-510). Thousand Oaks, CA: Sage Publications.
24. Kristen, R. N., Coleman, E. E., Fish, R., Levy, C., & Kutner, J. S. (2004). Factors influencing models of end-of-life care in nursing homes: Results of a survey of nursing home administrators. Journal of Palliative Medicine, 7 (5), 668-675.
25. Kristjanson, L. J. (1989). Quality of terminal care: Salient indicators identified by families. Journal of Palliative Care, 5, 21-28.
26. Lattanzi-Licht, M. (1991). Professional stress: Creating a context for caring. In D. Papadatou & C. Costas-Papadatos (Eds.), Children and death (pp. 293-302). New York: Hemisphere.
27. Lattanzi-Licht, M., Mahoney, J. J., & Miller, G. W. (1998). The hospice choice: In pursuit of a peaceful death. New York: Fireside.
28. Logan, M. (1988). Care of the terminally ill includes the family. Canadian Nurse, 84, 30-34.
29. Lord, B., & Pockett, R. (1998). Perceptions of social work intervention with bereaved clients: Some implications for hospital social work practice. Social Work in Healthcare, 27, 51-66.
30. McPhee, S. J., Rabow, M. W., Pantilat, S. J., Markowitz, A. J., & Winker, M. A. (2000). Finding our way: Perspectives on care at the close of life. Journal of the American Medical Association, 284, 2512-2513.
31. Mendyka, B. E. (1993). The dying patient in the intensive care unit: Assisting the family in crisis. AANC Clinical Issues, 4, 550-557.
32. Moen, P., Robison, J., & Fields, V. (1994). Women's work and caregiving roles: A life course approach. Journal of Gerontology: Social Sciences, 49, S176-186.
33. Murphy, K., Hanrahan, P., & Luchins, D. (1997). A survey of grief and bereavement in nursing homes: The importance of hospice grief and bereavement for the end-stage Alzheimcr's disease patient, and family. Journal of the American Geriatrics Society, 45, 1104-1107.
34. National Hospice and Palliative Care Organization (2004.) NHPCO facts and figures. Available at: http://www.nhpco.org/files/public/Hospice_Facts_110104. pdf. Accessed June 13, 2005.
35. Newton, M. S. (2000). Family-centered care: Current realities in parent participation. Pediatric Nursing, 26, 164-168.
36. Pearlin, L., Pioli, M. F., & McLaughlin, A. E. (2001). Caregiving by adult children: Involvement, role disruption, and health. In R. H. Binstock & L. K. George (Eds.), Handbook of aging and the social sciences (5th ed), (pp.238-254). New York: Academic Press.
37. Rawling, D., & Glynn, T. (2002). The development of a palliative care-led memorial service in an acute hospital setting. International Journal of Palliative Nursing, 8(1), 40-47.
38. Reese, D. J., & Sontag, M. A. (2001). Successful interprofessional collaboration on the hospice team. Health & Social Work, 26 (3), 167-174.
39. Roberts, K. E., & Boyle, L. A. (2005). End-of-life education in the pediatric intensive care unit. Critical Care Nursing, 25(1), 51-57.
40. Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centered service: A conceptual framework and research review. Physical & Occupational Therapy in Pediatrics, 18, 1-20.
41. Schwartz, C. E., Goulet, J. L., Phil, M., Gorski, V., & Selwyn, P. A. (2003). Medical residents' perceptions of end-of-life care training in a large urban teaching hospital. Journal of Palliative Medicine, 6 (1), 37-44.
42. Teno, J. M., Casey, V. A., Welch, L. C., & Edgman-Levitan, S. (2001). Patient-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.
43. Teno, J. M., Clarridge, B., Casey, V., Edgman-Levitan, S., & Fowler, J. (2001). Validation of toolkit after-death bereaved family member interview. Journal of Pain and Symptom Management, 22, 752-758.
44. WHO. (2005). Definition of palliative care. Accessed October 16, 2005: http://www.who.int/cancer/palliative/definition/en/