Remaining connected despite separation – former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home

References

• Almberg, B.E., Grafström, M., & Winblad, B. (2000). Caregivers of relatives with dementia: Experiences encompassing social support and bereavement. Aging & Mental Health, 4, 82–89.
   Web of Science ®Google Scholar
• Bertrand, R.M., Fredman, L., & Saczynski, J. (2006). Are all caregivers created equal? Stress in caregivers to adults with and without dementia. Journal of Aging & Health, 18, 534–551.
   PubMed Web of Science ®Google Scholar
• Black, W., & Almeida, O.P. (2004). A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics, 16, 295–315.
   PubMed Web of Science ®Google Scholar
• Bramble, M., Moyle, W., & McAllister, M. (2009). Seeking connection: Family care experiences following long-term care placement. Journal of Clinical Nursing, 18, 3118–3125.
   PubMed Web of Science ®Google Scholar
• Buhr, G.T., Kuchibhatla, M., & Clipp, E.C. (2006). Caregivers’ reasons for nursing home placement: Clues for improving discussions prior to the transition. Gerontologist, 46, 52–61.
   PubMed Web of Science ®Google Scholar
• Caron, C.D., & Bowers, B.J. (2003). Deciding whether to continue, share or relinquish caregiving: Caregiver views. Qualitative Health Research, 13, 1252–1271.
   PubMed Web of Science ®Google Scholar
• Clarke, A, Hanson, E.J., & Ross, H. (2003). Seeing the person behind the patient: Enhancing the care of older people using a biographical approach. Journal of Clinical Nursing, 12, 697–706.
   PubMed Web of Science ®Google Scholar
• Duggleby, W., Williams, A., Wright, K., & Bollinger, S. (2009). Renewing everyday hope: The hope experience of family caregivers of persons with dementia. Issues in Mental Health Nursing, 30, 514–521.
   PubMedGoogle Scholar
• Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2010). Promoting a continuation of self and normality: Person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 19, 2611–2618.
   PubMed Web of Science ®Google Scholar
• Ferri, C.P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., … Scazufca, M. (2005). Global prevalence of dementia: A Delphi consensus study. Lancet, 17, 2112–2217.
   Google Scholar
• Gaugler, J.E., Leach, C., Clay, T., & Newcomer, R. (2004). Predictors of nursing home placement in African Americans with dementia. Journal of American Geriatrics Society, 52, 445–452.
   PubMed Web of Science ®Google Scholar
• Gaugler, J.E., Roth, D.L., Haley, W.E., & Mittelman, M.S. (2008). Can counselling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer's disease during the transition to institutionalization? Results from the New York University caregiver intervention study. Journal of the American Geriatrics Society, 56, 421–428.
   Google Scholar
• Gaydos, H.L. (2005). Understanding personal narratives: An approach to practice. Journal of Advanced Nursing, 49, 254–259.
   PubMed Web of Science ®Google Scholar
• Gillies, B. (2012). Continuity and loss: The carers’ journey through dementia. Dementia, 11, 657–676.
   Google Scholar
• Givens, J.L., Lopez, R.P., Mazor, K.M., & Mitchell, S.L. (2012). Sources of stress for family members of nursing home residents with advanced dementia. Alzheimers Disease Association Disorder, 26, 254–259.
   PubMed Web of Science ®Google Scholar
• Graneheim, U.H., Johansson, A., & Lindgren, B.-M. (2013). Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: Insights from a meta-ethnographic study. Scandinavian Journal of Caring Sciences, Apr 12. doi:10.1111/scs.12046. [Epub ahead of print].
   Web of Science ®Google Scholar
• Graneheim, U.H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112. doi:10.1016/j.nedt.2003.10.001.
   PubMed Web of Science ®Google Scholar
• Helgesen, A.K., Larsson, M., & Athlin, E. (2012). How do relatives of persons with dementia experience their role in the patient participation process in special care units? Journal of Clinical Nursing, 22, 1672–1681.
   PubMed Web of Science ®Google Scholar
• Hertzberg, A., Ekman, S.L., & Axelsson, K. (2001). Staff activities and behaviour are the source of many feelings: Relatives’ interactions and relationships with staff in nursing homes. Journal of Clinical Nursing, 10, 380–388.
   PubMed Web of Science ®Google Scholar
• Hertzberg, A., Ekman, S.L, & Axelsson, K. (2003). Relatives are a resource, but… registered nurses views and experiences of relatives of residents in nursing homes. Journal of Clinical Nursing, 12, 431–441.
   PubMed Web of Science ®Google Scholar
• Hooker, K., Bowman, S.R., Coehlo, D.P., Lim, S.R., Kaye, J., Guariglia, R., … Fuzhong, L. (2002). Behavioral change in persons with dementia: Relationships with mental and physical health in caregivers. Journal of Gerontology: Psychological Sciences, 57B, 453–460.
   Google Scholar
• Krippendorff, K. (2004). Content analysis: An introduction to its methodology. London: Sage.
   Google Scholar
• Liken, M.A. (2001). Caregivers in crisis: Moving a relative with Alzheimer's to assisted living. Clinical Nursing Research, 10, 52–68.
   PubMedGoogle Scholar
• Lilly, M.B., Robinson, C.A., Holtzman, S., & Bottorff, J.L. (2012). Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health and Social Care in the Community, 20, 103–112.
   PubMed Web of Science ®Google Scholar
• Lundh, U., Sandberg, J., & Nolan, M. (2000). ‘I don´t have any other choice’: Spouses’ experiences of placing a partner in a care home for older people in Sweden. Journal of Advanced Nursing, 32, 1178–1186.
   PubMed Web of Science ®Google Scholar
• Lynn-McHale, D.J., & Deatrick, J.A. (2000). Trust between family and health care provider. Journal of Family Nursing, 6, 210–230.
   Google Scholar
• Mishler, E.G. (1995). Models of narrative analysis: A typology. Journal of Narrative and Life History, 5, 87–123.
   Web of Science ®Google Scholar
• National Board of Health and Welfare. (2010). NPS Årsrapport 2010. En analys av barnmorskors, sjuksköterskors, läkares och tandläkares arbetsmarknad [ NPS Annually report 2010. An analysis of midwives, registered nurses, physicians and dentists labour market]. Stockholm: Author.
   Google Scholar
• Netto, N.R, Goh, J., & Yap, P. (2009). Growing and gaining through caring for a loved one with dementia. Dementia, 8, 245–261.
   Google Scholar
• Nolan, M., & Dellasega, C. (1999). ‘It's not the same as him being at home’: Creating caring partnerships following nursing home placement. Journal of Clinical Nursing, 8, 723–730.
   PubMed Web of Science ®Google Scholar
• Nolan, M., & Dellasega, C. (2000). ‘I really feel I’ve let him down’: Supporting family carers during long-term care placement for elders. Journal of Advanced Nursing, 31, 759–767.
   PubMed Web of Science ®Google Scholar
• Park, M., Butcher, H.K., & Maas, M. (2004). A thematic analysis of Korean family caregivers’ experiences in making the decision to place a family member with dementia in a long-term care facility. Research in Nursing & Health, 27, 345–356.
   PubMed Web of Science ®Google Scholar
• Quinn, C., Clare, L., Pearce, A., & Van Dijkhuizen, M. (2008). The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis. Aging & Mental Health, 12, 769–778.
   PubMed Web of Science ®Google Scholar
• Ryan, A.A., & Scullion, H.F. (2000). Nursing home placement: An exploration of the experiences of family carers. Journal of Advanced Nursing, 32, 1187–1195.
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (1986). The problem of rigor in qualitative research. Journal of Advanced Nursing, 8, 27–37.
   Google Scholar
• Sandelowski, M. (1995). Focus on qualitative methods: Sample size in qualitative research. Research in Nursing & Health, 18, 179–183.
   PubMed Web of Science ®Google Scholar
• Sanders, S., Ott, C.H., Kelber, S.T., & Noonan, P. (2008). The experience of grief in caregivers of persons with Alzheimer's disease and related dementia. Death Studies, 32, 495–523.
   PubMed Web of Science ®Google Scholar
• Strang, V.R., Koop, P.M., Dupuis-Blanchard, S., Nordstrom, M., & Thompson, B. (2006). Family caregivers and transition to long-term care. Clinical Nursing Research, 15, 27–45.
   PubMedGoogle Scholar
• Swedish Council on Health Technology Assessment. (2006). Demenssjukdomar [Dementia Diseases]. Report No.172. Stockholm: Norstedts.
   Google Scholar
• Swedish Nurses Association. (2013). Nationellt nätverk för demenssjuksköterskor [ National network for dementia nurses]. Retrieved from http://www.swenurse.se/Sektioner-och-Natverk/Nationellt-natverk-for-demenssjukskoterskor1/Demens-/
   Google Scholar
• Tornatore, J.B., & Grant, L.A. (2004). Family caregiver satisfaction with the nursing home after placement of a relative with dementia. Journals of Gerontology Series B-Psychological Sciences and Social Sciences, 59, 80–88.
   PubMed Web of Science ®Google Scholar
• Whitlatch, C.J., Schur, D., Noelker, L.S., Ejaz, F.K., & Looman, W.J. (2001). The stress process of family caregiving in institutional settings. The Gerontologist, 41, 462–473.
   PubMed Web of Science ®Google Scholar
• World Medical Association. (2008). Declaration of Helsinki. Ethical principles for medical research involving human subjects. Retrieved from http://www.wma.net/en/30publications/10policies/b3/
   Google Scholar