Integrating end of life care into services for people with an intellectual disability

Social Work in Health Care

Volumn 31, Issue 1, 2000, Pages 35-48

  Botsford, Anne L ^a  

^a MARIST COLLEGE   (United States)

Author keywords

Aging; Bereavement; Death; Developmental disability; Dying; Grief; Hospice; Mental retardation; Mourning

Indexed keywords

BEREAVEMENT; COUNSELING; DISABILITY; DYING; EDUCATION; EDUCATION PROGRAM; EXPERIENCE; GRIEF; HOSPICE; HUMAN; INTELLECT; INTELLECTUAL IMPAIRMENT; INTERPERSONAL COMMUNICATION; LEARNING; LIVING WILL; PERCEPTION; POLICY; REVIEW; SOCIAL WORKER; STAFF; SUPPORT GROUP; TERMINAL CARE;

ADULT; ADVANCE DIRECTIVES; ATTITUDE TO DEATH; BEREAVEMENT; CAREGIVERS; COUNSELING; FAMILY; HUMANS; MENTAL RETARDATION; PROFESSIONAL-PATIENT RELATIONS; SOCIAL SUPPORT; SOCIAL WORK, PSYCHIATRIC; TERMINAL CARE; UNITED STATES;

EID: 0033846020     PISSN: 00981389     EISSN: 1541034X     Source Type: Journal    
DOI: 10.1300/J010v31n01_03     Document Type: Article

References (42)

1. Arentson, J. (1998, August 19). Workgroup communication. Nursing Services, Taconic Developmental Disabilities Services Office, 7 Mansion Street, Poughkeepsie, NY 12601.
2. Barbera, T., Pitch, R., ‖ Howell, M. (1989). Death and dying: A guide for staff serving adults with mental retardation. Boston: Exceptional Parent Press.
3. Botsford, A ‖ Force, L. (Eds.), (2000a). End of life care: A guide for staff supporting older people with developmental disabilities. New York State Association for Retarded Citizens, (NYsArC, Inc.). Delmar Press, Delmar, NY 12504.
4. Botsford, A. ‖ Force, L. (Eds.), (2000b). End of life care: Resources for staff supporting older people with developmental disabilities. New York State Association for Retarded Citizens, (NYSARC, Inc.). Delmar Press, Delmar, NY 12504.
5. Carder, M. (1987). Journey into understanding mentally retarded people’s experiences around death. The Journal of Pastoral Care, 41, 18–31.
6. Cook, A.S. ‖ Dworkin, D.S. (1992). Helping the bereaved: Therapeutic interventions for children, adolescents and adults. New York, NY: Basic Books.
7. Corr, (1993). Coping with dying: Lessons we should and should not learn from the work of Elisabeth Kubler-Ross. Death. Studies, 17, 68–83.
8. Deutsch, H. (1985). Grief counseling with the mentally retarded client. Psychiatric aspects of mental retardation reviews, 4 (5), 17–20.
9. Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lexington, MA: Lexington.
10. Dunn, H. (1994). Hard choices for loving people. Virginia: A ‖ A Publishers.
11. Emerson, P. (1977). Covert grief reactions in mentally retarded clients. Mental Retardation, 15 (6), 46–47.
12. Evinger, J. S. (1998, August 19). Workshop communication. Department of Religious Services, Finger Lakes Developmental Disabilities Service Office, 620 Westfall Road, Rochester, NY 14620.
13. Fauri, D. ‖ Grimes, D. (1994). Bereavement services for families and peers of deceased residents of psychiatric institutions. Social Work, 39, 185–190.
14. Friedman, R.I. (1998). Use of advance directives: Facilitating health care decisions by adults with mental retardation and their families. Mental Retardation, 36(6), 444–456.
15. Gibson, D.E. (1974). Hospice and the new devaluation of human life. Mental Retardation, 22, 157–162.
16. Harper, D.C. ‖ Wadsworth, J. S. (1993). Grief in adults with mental retardation: Preliminary findings. Research in Developmental Disabilities, 14, 313–330.
17. Hedger, C.J. ‖ Smith, M.J (1993). Death education for older adults with developmental disabilities. Activities, Adaptation and Aging, 18 (1), 29–36.
18. Hollis, Shelia (1995). Managing grief better: People with developmental disabilities. The Habilitative Mental Healthcare Newsletter, May/June, 14(3).
19. Howell, M. ‖ Pitch, R. (1989). Ethical dilemmas in caregiving: A guide for staff serving adults with mental retardation. Boston, MA: Exceptional Parent Press.
20. Janicki, M.P., Dalton, A.J., Henderson, C.M. and Davidson, P.W. (In press). Mortality and morbidity among older adults with intellectual disability: Health services considerations. Disability and Rehabilitation.
21. Kauffman, J. (1994). Mourning and mental retardation. Death. Studies, 18, 257–271.
22. Kessler, D. (1997). The rights of the dying. New York: Harper Collins.
23. King, M.P. (1996). Making sense of advance directives (rev. ed.). Washington: Georgetown University Press.
24. Kloeppel, D. ‖ Hollins, S. (1989). Double handicap: Mental retardation and death in the family. Death Studies, 13, 31–38.
25. Kramer, B.J. (1998). Preparing social workers for the inevitable: A preliminary investigation of a course on grief, death and loss. Journal of Social Work Education, 34, 211–228.
26. Kubler-Ross, E. (1969). On death and dying. New York: Macmillan.
27. Lavin, C. (1989). Disenfranchised grief and the developmentally disabled. In K. Doka (ed.) Disenfranchised Grief: Recognizing hidden sorrow (pp. 229–237). Lexington, MA: Lexington.
28. Luchterhand, C. ‖ Murphy, N. (1998). Helping adults with mental retardation grieve a death loss. Bristol, PA: Accelerated development.
29. Luchterhand, C. (1998). Mental retardation and grief following a death loss: Information for families and other caregivers. The ARC of the United States. 500 East Border Street, Suite 300. Arlington, Texas 76010.
30. Mary, N. L. (1998). Social work and the support model of services for people with developmental disabilities. Journal of Social Work Education, 34, 247–260.
31. McDaniel, B. (1989). A group work experience with mentally retarded adults on the issues of death and dying. Journal of Gerontological Social Work, 13, 187–191.
32. McLaughlin, I.J. (1986). Bereavement in the mentally handicapped. British Journal of Hospital Medicine, 36, 256–260.
33. Moise, L.E. (1978). In sickness and in death. Mental Retardation, 16(6), 397–398.
34. OMRDD. Advance directives. (1994). Albany, NY: State of New York, Office of Mental Retardation and Developmental Disabilities.
35. Rando, T.A. (1993). Treatment of complicated mourning. Champaign, IL: Research Press.
36. Rothberg, E.D. (1994). Bereavement intervention with vulnerable populations: A case report on groupwork with the developmentally disabled. Social Work With Groups, 17, 61–75.
37. Service, K., Lavoie, D. ‖ Herlihy, J. (1999). Coping with losses, death, and grieving. In M.P. Janicki and A. Dalton (Eds.), Dementia, aging and intellectual disabilities: A handbook (pp. 330–351). Philadelphia: Taylor and Francis.
38. Sterns, H., Kennedy-Hart, Sed, C., ‖ Sutton, E. (In press). Person-centered planning for later life: A curriculum on death and dying for adults with mental retardation. Chicago, IL: RRTC Clearinghouse on Aging and Developmental Disabilities.
39. Stroebe, M., Van Den Bout Stroeve, M., Van Den Bout, J., Schut, H. (1994). Myths and misconceptions about bereavement: The opening of a debate. Omega, 29, 187–203.
40. Wadsworth, J. ‖ Harper, D. (1991). Grief and bereavement in mental retardation: A need for a new understanding. Death. Studies, 15, 281–292.
41. Wortman, C ‖ Silver, R. (1989). The myths of coping with loss. The Journal of Consulting and Clinical Psychology, 57, 349–357.
42. Yanok, J. ‖ Beifus, J. (1993). Communicating about loss and mourning: Death education for individuals with mental retardation. Mental Retardation, 31 (3), 144–147.