Advocating for a parent with dementia in a long-term care facility: The process experienced by daughters

Journal of Family Nursing

Volumn 15, Issue 2, 2009, Pages 198-219

  Legault, Alain ^a,b   Ducharme, Francine ^a,b  

^a UNIVERSITÉ DE MONTRÉAL   (Canada)

^b CENTRE DE RECHERCHE   (Canada)

Author keywords

Advocacy; Daughter caregivers; Dementia; Family caregiving; Institutionalization; Long term care; Nurse family relationships

Indexed keywords

AGED; ARTICLE; CAREGIVER; DEMENTIA; FEMALE; HEALTH CARE QUALITY; HUMAN; INTERVIEW; LONG TERM CARE; MALE; MIDDLE AGED; NUCLEAR FAMILY; NURSING; PARENT; PATIENT ADVOCACY; PSYCHOLOGICAL ASPECT;

AGED; CAREGIVERS; DEMENTIA; FEMALE; HUMANS; INTERVIEWS AS TOPIC; LONG-TERM CARE; MALE; MIDDLE AGED; NUCLEAR FAMILY; PARENTS; PATIENT ADVOCACY; QUALITY OF HEALTH CARE;

EID: 65649089086     PISSN: 10748407     EISSN: 1552549X     Source Type: Journal    
DOI: 10.1177/1074840709332929     Document Type: Article

References (42)

1. Almberg, B., Grafström, M., Krichbaum, K., & Winblad, B. (2000). The interplay of institution and family caregiving: Relations between patient hassles, nursing home hassles and caregivers' burnout. International Journal of Geriatric Psychiatry, 15, 931-939.
2. Aneshensel, C., Pearlin, L., Mullan, J., Zarit, S., & Whitlatch, C. (1995). Profiles in caregiving. San Diego, CA: Academic Press.
3. Bauer, M., & Nay, R. (2003). Family and staff partnerships in long-term care: A review of the literature. Journal of Gerontological Nursing, 29(10), 46-53.
4. Bern-Klug, M., & Forbes-Thompson, S. (2008). Family members' responsibilities to nursing home residents: "She is the only mother I got." Journal of Gerontological Nursing, 34(2), 43-52.
5. Brody, E.M. (2003). Women in the middle (2nd ed.). New York: Springer.
6. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.
7. Chinn, P.L. (2005). Theory and practice. Hagerstown, MD: Lippincott Williams & Wilkins.
8. Corbin, J., & Strauss, A.L. (2007). Basics of qualitative research. Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: Sage.
9. Davis, L.L., & Buckwalter, K. (2001). Family caregiving after nursing home admission. Journal of Mental Health & Aging, 7, 361-379.
10. Ducharme, F. (2008). Swedish experience of a negotiated approach to carer assessment: The Carers Outcome Agreement Tool (COAT). Journal of Research in Nursing, 13(5), 409-410.
11. Ducharme, F., Beaudet, L., Legault, A., Kergoat, M.-J., & Lévesque, L. (2009). Development and qualitative evaluation of an intervention program for Alzheimer's family caregivers following diagnostic disclosure. Clinical_Nursing_Research, 18(1), 44-67.
12. Ducharme, F., Lévesque, L., Gendron, M., & Legault, A. (2001a). Development process and qualitative evaluation of a program to promote the mental health of family caregivers. Clinical Nursing Research, 10, 182-201.
13. Ducharme, F., Lévesque, L., Gendron, M., & Legault, A. (2001b). A program to promote the mental health of family caregivers of elderly demented parents in institution: Qualitative evaluation. Clinical Nursing Research, 10(1), 182-201.
14. Ducharme, F., Lévesque, L., Lachance, L., Giroux, F., Legault, A., & Préville, M. (2005). "Taking care of myself": Efficacy of an intervention program for caregivers of a relative suffering from dementia living in a long-term care setting. Dementia: The International Journal of Social Research and Practice, 4(1), 23-47.
15. Ducharme, F., Lévesque, L., Lachance, L., Legault, A., & Préville, M. (2005). Taking care of myself: Efficacy of an intervention program for caregivers of a relative suffering from dementia living in a long-term care setting. Dementia: The International Journal of Social Research and Practice, 4(1), 23-47.
16. Ducharme, F., Lévesque, L., Lachance, L., Zarit, S., Gangbè, M., Vézina, J., et al. (2007). Older husbands as caregivers: Factors associated with health and the intention to end home caregiving. Research on Aging, 29(1), 3-31.
17. Ducharme, F., Lévesque, L., Zarit, S., Lachance, L., Giroux, F., Vézina, J., et al. (2007). Changes in caregiving outcomes for older husband caregivers: A one-year longitudinal study. International Journal of Aging and Human Development, 65(1), 73-96.
18. Fawcett, J. (1999). The relationship of theory and research (3rd ed.). Philadelphia: Davis.
19. Gaugler, J.E. (2005). Family involvement in residential long-term care: A synthesis and critical review. Aging & Mental Health, 9(2), 105-118.
20. Gauthier, S., & Poirier, J. (2007). Maladie d'Alzheimer [Alzheimer's disease]. In M. Arcand & R. Hébert (Eds.), Précis pratique de gériatrie [Handbook of geriatrics] (pp. 257-266). Acton Vale, Quebec, Canada: Edisem.
21. Gladstone, J., & Wexler, E. (2000). A family perspective of family/ staff interaction in long-term care facilities. Geriatric Nursing, 21, 16-19.
22. Gladstone, J., & Wexler, E. (2002a). The development of relationships between families and staff in long-term care facilities: Nurses' perspectives. Canadian Journal on Aging, 21, 217-228.
23. Gladstone, J., & Wexler, E. (2002b). Exploring the relationships between families and staff caring for residents in long-term care facilities: Family members' perspectives. Canadian Journal on Aging, 21, 39-46.
24. Heinrich, M., Neufeld, A., & Harrison, M.J. (2003). Seeking support: Caregiver strategies for interacting with health personnel. Canadian Journal of Nursing Research, 35(4), 38-56.
25. Hertzberg, A., & Ekman, S.L. (2000). "We, not them and us?" Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes. Journal of Advanced Nursing, 31, 614-622.
26. Knapp, M., & Prince, M. (2007). Dementia UK. The full report. London: Alzheimer's Society.
27. Lauzier, M. (1999). La signification de l'expérience d'être aidante de son conjoint atteint de démence lorsque celui-ci vit en hébergement [The meaning of the caregiving experience of a husband suffering of dementia in long-term care setting]. Unpublished master's essay, University of Montreal, Quebec, Canada.
28. Levine, C., Reinhard, S.C., Friss Feinberg, L., Albert, S., & Hart, A. (2003). Family caregivers on the job: Moving beyond ADLs and IADLs. Generations, 27(4), 17-23.
29. Levine, C., & Zuckerman, C. (2000). The trouble with families: Toward an ethic of accommodation. In C. Levine (Ed.), Always on call. When illness turns families into caregivers (pp. 147-157). New York: United Hospital Fund of New York.
30. Liken, M. (2001). Caregivers in crisis. Moving a relative with Alzheimer's to assisted living. Clinical Nursing Research, 10, 52-68.
31. Maas, M.L., Reed, D., Park, M., Specht, J.P., Schutte, D., Kelley, L.S., et al. (2004). Outcomes of family involvement in care intervention for caregivers of individuals with dementia. Nursing Research, 53(2), 76-86.
32. McEwen, M. (2002). Application of theory in nursing practice. In M. McEwen & E. M. Wills (Eds.), Theoretical basis for nursing (pp. 347-367). Philadelphia: Lippincott Williams & Wilkins.
33. Meleis, A.I., & Im, E. (2001). From fragmentation to integration: Situation specific theories. In N. L. Chaska (Ed.), The nursing profession: Tomorrow and beyond (3rd ed., pp. 881-891). Thousand Oaks, CA: Sage.
34. Monahan, D.J. (1995). Informal caregivers of institutionalized dementia residents: Predictors of burden. Journal of Gerontological Social Work, 23(3/4), 65-82.
35. National Institute on Aging. (2004). 2003 progress report on Alzheimer's disease. Bethesda, MD: National Institutes of Health.
36. Neufeld, A., Harrison, M.J., Stewart, M., & Hughes, K. (2008). Advocacy of women family caregivers: Response to nonsupportive interactions with professionals. Qualitative Health Research, 18, 301-310.
37. Padgett Coehlo, D., Hooker, K., & Bowman, S. (2007). Institutional placement of persons with dementia: What predicts occurrence and timing? Journal of Family Nursing, 13(2), 253-277.
38. Sandberg, J., Nolan, M.R., & Lundh, U. (2002). "Entering a new world": Empathic awareness as the key to positive family/staff relationships in care homes. International Journal of Nursing Studies, 39, 507-515.
39. Smith, M.J., & Liehr, P.R. (2003). Middle range theory for nursing. New York: Springer.
40. Vézina, A., & Pelletier, D. (2004). La participation à l'aide et aux soins des conjoints et des enfants auprès des personnes âgées nouvellement hébergées en centre d'hébergement et de soins de longue durée [Spousal and filial involvement in helping and caring for elders newly admitted to long-term care facilities]. Canadian Journal on Aging/Revue canadienne du vieillissement, 23, 59-71.
41. Ward-Griffin, C., Bol, N., Hay, K., & Dashnay, I. (2003). Relationships between families and registered nurses in long-term-care facilities: A critical analysis. Canadian Journal of Nursing Research, 35(4), 150-174.
42. Warren, C.A.B. (2002). Qualitative interviewing. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of interview research: Context & method (pp. 83-101). Thousand Oaks, CA: Sage.