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Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities

Published online by Cambridge University Press:  20 June 2013

Birgitta Wallerstedt ,
Birgitta Andershed  and
Eva Benzein
Birgitta Wallerstedt*
Affiliation:
School of Human Sciences, Linneaus University, Kalmar, Sweden
Birgitta Andershed
Affiliation:
Department of Nursing, Gjøvik, University College, Gjøvik, Norway and Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden
Eva Benzein
Affiliation:
School of Human Sciences, Linneaus University, Kalmar, Sweden
*
Address correspondence and reprint requests to: Birgitta Wallerstedt, School of Human Sciences, Linneaus University, 391 82 Kalmar, South Sweden. E-mail: birgitta.wallerstedt@lnu.se
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Abstract

Objective:

To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.

Methods:

Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation

Results:

Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.

Significance of the research:

Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

Keywords

Family membersCaregiving situationsMultiple realitiesSitting servicePalliative home care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 6 , December 2014 , pp. 425 - 437
Copyright
Copyright © Cambridge University Press 2013 

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References

REFERENCES

Andershed, B. (2006). Relatives in end-of-life care—Part 1: A systematic review of literature the last five years, January 1999–February 2004. Journal of Clinical Nursing, 15, 1158–1169.CrossRefGoogle ScholarPubMed
Aoun, S., Kristjanson, L., Currow, D., et al. (2005). Caring for the terminally ill: At what cost? Palliative Medicine, 19, 551–555.CrossRefGoogle Scholar
Aranda, S. & Hayman-White, K. (2001). Home caregiver of the person with advanced cancer—An Australian perspective. Cancer Nursing, 24, 300–307.CrossRefGoogle ScholarPubMed
Armes, P.J. & Addington-Hall, J.M. (2003). Perspectives on symptom control in patients receiving community palliative care. Palliative Medicine, 17, 608–615.CrossRefGoogle ScholarPubMed
Ashworth, M. & Baker, A.H. (2000). “Time and space”: Carers' view about respite care. Health and Social Care in the Community, 8, 50–56.CrossRefGoogle Scholar
Barrett, M., Wheatland, B., Haseby, P., et al. (2009). Palliative respite services using nursing staff reduces hospitalization of patients and improves acceptance among carers. International Journal of Palliative Nursing, 15, 389–395.CrossRefGoogle ScholarPubMed
Bell, C.L., Somogyl-Zalud, E. & Masaki, K.H. (2010). Factors associated with congruence between preferred and actual place of death. Journal of Symptom Management, 39, 591–604.Google ScholarPubMed
Benzein, E., Hagberg, M. & Saveman, B.I. (2008). Being appropriately unusual—A challenge for nurses in health promoting conversations with families. Nursing Inquiry, 15, 106–115.CrossRefGoogle ScholarPubMed
Boyd, K.J., Murray, S.A., Kendall, M. et al. (2004). Living with advanced heart failure: A prospective community based study of patients and their carers. European Journal of Heart Failure, 6, 585–591.CrossRefGoogle ScholarPubMed
Brereton, L. & Nolan, M. (2000). “You do know he's had a stroke, dońt you?” Preparation for family care-giving—The neglected dimension. Journal of Clinical Nursing, 9, 498–506.CrossRefGoogle Scholar
Brobäck, G. & Berterö, C. (2003). How next of kin experience palliative care of relatives at home. European Journal of Cancer Care, 12, 339–346.CrossRefGoogle ScholarPubMed
Burridge, L., Winch, S. & Clavarino, A. (2007). Reluctance to care. A systematic review and development of a conceptual framework. Cancer Nursing, 30, E9–19.CrossRefGoogle Scholar
Burt, J., Shipman, C., Addington-Hall, J., et al. (2008). Nursing the dying within a generalist caseload: A focus group study of district nurses. International Journal of Nursing Studies, 45, 1470–1478.CrossRefGoogle ScholarPubMed
Cameron, J.I. & Gignac, M.A. (2008). “Timing is right”: A conceptual framework for addressing thesupport needs of family caregivers to stroke survivors from hospital to the home. Patient Education and Counseling, 70, 305–314.CrossRefGoogle Scholar
Carlander, I. (2011). Me-ness and we-ness in a modified everyday life close to death at home. (Doctoral dissertation). Karolinska institutet, Stockholm.Google Scholar
Cohen, J., Bilsen, J., Hooft, P., et al. (2006). Dying at home or in an institution using death certificates to explore the factors associated with place of death. Health Policy, 78, 319–329.CrossRefGoogle ScholarPubMed
Considine, J. & Miller, K. (2010). The dialectics of care: Communicative choices at the end of life. Health Communication, 25, 165–174.CrossRefGoogle ScholarPubMed
Curtis, J.R. (2008). Palliative and end-of-life care for patients with severe COPD. The European Respiratory Journal, 32, 796–803.CrossRefGoogle ScholarPubMed
Dawson, S. & Kristjanson, L. (2003). Mapping the journey: Family carers' perceptions of issues related to end- stage care of individuals with muscular dystrophy or motor neuron disease. Journal of Palliative Care, 19, 36–42.CrossRefGoogle ScholarPubMed
Daaleman, T., Usher, B.M., Williams, S.W., et al. (2008). An exploratory study of spiritual care at the end of life. Annals of Family Medicine, 6, 406–411.CrossRefGoogle ScholarPubMed
Dobrof, J., Ebenstein, H., Dodd, S.J. et al. (2006). Caregivers and professionals partnership caregiver resource center: Assessing a hospital support program for family caregivers. Journal of Palliative Medicine, 9, 196–205.CrossRefGoogle ScholarPubMed
Dybwik, K., Nielsen, E.W. & Brinchmann, B.S. (2011). Home mechanical ventilation and specialized health care in the community: Between a rock and a hard place. BioMed Central Health Services Research, 11, 115.CrossRefGoogle Scholar
Ek, K. (2010). Living with very severe chronic obstructive pulmonary disease—A life in slow motion. (Doctoral dissertation). Örebro University, Örebro, Sweden.Google Scholar
European Association of Palliative Care (EAPC). (2010). White paper on improving support for family carers in palliative care: Part 2. European Journal of Palliative Care, 17, 286–290.Google Scholar
Funk, L., Stajduhar, K.I., Toye, C., et al. (2010). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24, 594–607.CrossRefGoogle ScholarPubMed
Gomes, B. & Higginson, I.J. (2006). Factors influencing death at home in terminally ill patients with cancer: Systematic review. British Medical Journal, 332, 515–521.CrossRefGoogle ScholarPubMed
Grande, G., Stajduhar, K., Aoun, S., et al. (2009). Supporting lay carers in end of life care: Current gaps and future priorities. Palliative Medicine, 23, 339–344.CrossRefGoogle ScholarPubMed
Grbich, C., Parker, D. & Maddocks, I. (2001). The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal of Palliative Care, 17, 30–36.CrossRefGoogle ScholarPubMed
Harding, R. & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9, 642–645.CrossRefGoogle ScholarPubMed
Herbert, R.S., Schulz, R., Copeland, V., et al. (2008). 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. Journal of Palliative Medicine, 11, 476–483.CrossRefGoogle Scholar
Higginson, I.J. & Sen-Gupta, G.J. (2000). Place of care in advanced cancer: A qualitative systematic literature review of patient preferences. Journal of Palliative Medicine, 3, 287–300.CrossRefGoogle Scholar
Houldin, A.D. (2007). A qualitative study of caregivers' experiences with newly diagnosed advanced colorectal cancer. Oncological Nursing Forum, 34, 323–330.CrossRefGoogle ScholarPubMed
Hudson, P. (2003a). Home-based support for palliative care families: Challenges and recommendations. The Medical Journal of Australia, 179, 35–37.CrossRefGoogle ScholarPubMed
Hudson, P. (2003b). A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliative and Supportive Care, 1, 353–365.CrossRefGoogle ScholarPubMed
Hudson, P. (2006). How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? Palliative Medicine, 9, 694–703.CrossRefGoogle ScholarPubMed
Hudson, P., Thomas, K., Trauer, T., et al. (2011). Psychological and social profile of family caregivers on commencement of palliative care. Journal of Pain and Symptom Management, 41, 522–534.CrossRefGoogle ScholarPubMed
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at the end of life: perspectives from spousal caregivers and care recipients. Palliative and Supportive Care, 5, 11–17.CrossRefGoogle ScholarPubMed
Kazanowski, M. (2005). Family caregivers' medication management of symptoms in patients with cancer near death. Journal of Hospice and Palliative Nursing, 7, 174–181.CrossRefGoogle Scholar
Koop, P.M. & Strang, V.R. (2003). The bereavement experience following home-based caregiving for persons with advanced cancer. Clinical Nursing Research, 12, 127–144.CrossRefGoogle ScholarPubMed
Kristjanson, L.J., Cousins, K., White, K., et al. (2004). Evaluation of a night respite community palliative care service. International Journal of Palliative Nursing, 10, 84–90.CrossRefGoogle ScholarPubMed
Maeckelberghe, E. (2004). Feminist ethic of care: A third alternative approach. Health Care Analysis, 12, 317–327.CrossRefGoogle Scholar
Maturana, H.R. (1988). Reality: The search for objectivity or the quest for a compelling argument. The Irish Journal of Psychology, 9, 25–82.CrossRefGoogle Scholar
Meiers, S.J. & Brauer, D.J. (2008). Existential caring in the family health experience: A proposed conceptualization. Scandinavian Journal Caring Sciences, 22, 110–117.CrossRefGoogle ScholarPubMed
Milberg, A., Strang, P. & Jacobsson, M. (2005). Next of kin's experience of powerlessness and helplessness in palliative home care. Supportive and Cancer Care, 12, 120–128.CrossRefGoogle Scholar
Milberg, A., Wåhlberg, R., Jakobsson, M., et al. (2012). What is a “secure base” when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care. Psycho-Oncology, 21, 886–895.CrossRefGoogle Scholar
Mitty, E. & Flores, S. (2009). There's no place like home. Geriatric Nursing, 30, 126–129.CrossRefGoogle ScholarPubMed
Mok, E., Chan, F., Chan, V., et al. (2003). Family experience caring for terminally ill patients with cancer in Hong Kong. Cancer Nursing, 26, 267–275.CrossRefGoogle ScholarPubMed
National Board of Health and Welfare. (2010). Tillgång på vårdplatser (Available care places). Stockholm: National Board of Health and Welfare.Google Scholar
Neufeld, A., Harrison, M.J., Hughes, K., et al. (2007). Non-supportive interactions in the experience of woman family caregivers. Health and Social Care in the Community, 15, 530–541.CrossRefGoogle ScholarPubMed
Neufeld, A., & Kushner, K.E. (2009). Men family caregivers' experiences of non-supportive interactions: Context and expectations. Journal of Family Nursing, 15, 171–197.CrossRefGoogle Scholar
Oldham, L. & Kristjanson, L.J. (2004). Development of a pain management programme for family carers of advanced cancer patients. International Journal of Palliative Nursing, 10, 91–99.CrossRefGoogle ScholarPubMed
Payne, S., Ingleton, C., Scott, G., et al. (2004). A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite. Palliative Medicine, 18, 692–697.CrossRefGoogle ScholarPubMed
Rempel, G.R., Neufeld, A. & Kushner, K.E. (2007). Interactive use of genogram and ecomaps in family caregiving research. Journal of Family Nursing, 13, 403–413.CrossRefGoogle ScholarPubMed
SALAR (Swedish Association of Local Authorities and Regions). (2008–2009). Vård och omsorg (Health care and social service). In Aktuellt på äldreområdet, 2008. Stockholm: SALAR (Swedish Association of Local Authorities and Regions).Google Scholar
Sellman, D. (2005). Towards an understanding of nursing as a response to human vulnerability. Nursing Philosophy, 6, 2–10.CrossRefGoogle ScholarPubMed
SFS. (2001). Socialtjänstlag. 2001:453 (The Social Service Act 2001:453). Ministry of Health and Social Affairs). Stockholm: Fritzes.Google Scholar
Shipman, C., Addington-Hall, J., Richardson, A., et al. (2005). Palliative care services in England: A survey of district nurses' views. British Journal of Community Nursing, 10, 381–386.CrossRefGoogle Scholar
Skilbeck, J.K., Payne, S.A., Ingleton, M.C., et al. (2005). An exploration of family carers' experience of respite services in one specialist palliative care unit. Palliative Medicine, 19, 610–618.CrossRefGoogle ScholarPubMed
Smith, P. (2004). Working with family care-givers in a palliative care setting. In Palliative care nursing: Principles and evidence for practice, Payne, S., Seymore, J. & Ingleton, C. (eds.), pp 312–328. New York: Open University Press.Google Scholar
SOU. (2011). Kommunaliserad hemsjukvård. Betänkande av utredningen En nationell samordnare för hemsjukvård. SOU 2011:55 (Home health care in municipality. Report of the investigation A national coordinator for home health care. Official Reports of the Swedish Government, 2011:55.). Stockholm: Fritzes.Google Scholar
Stajduhar, K. & Davies, B. (2005). Variations in and factors influencing family members' decisions for palliative home care. Palliative Medicine, 19, 21–32.CrossRefGoogle ScholarPubMed
Stajduhar, K., Funk, L., Toye, C., et al. (2010). Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998–2008). Palliative Medicine, 24, 573–593.CrossRefGoogle ScholarPubMed
Stake, R.E. (1995). The Art of Case Study Research. London: Sage Publications.Google Scholar
Strang, V.R., Koop, P.M. & Peden, J. (2002). The experience of respite during home based family caregiving for persons with advanced cancer. Journal of Palliative Care, 18, 97–104.CrossRefGoogle ScholarPubMed
Wallerstedt, B., Benzein, E. & Andershed, B. (2011). Sharing living and dying: A balancing act between vulnerability and a sense of security. Enrolled nurses' experiences of working in the sitting service for dying patients at home. Palliative and Supportive Care, 9, 295–303.CrossRefGoogle Scholar
Wennman-Larsen, A. & Tishelman, C. (2002). Advanced home care for cancer patients at the end of life: A qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Sciences, 16, 240–247.CrossRefGoogle ScholarPubMed
Wolkowski, A., Carr, S.M. & Clarke, C.L. (2010). What does respite care mean for palliative care service users and carers? Messages from a conceptual mapping. International Journal of Palliative Nursing, 16, 388–392.CrossRefGoogle ScholarPubMed
World Health Organization (WHO). (2002). Definition of palliative care. http://www.who.int/cancer/media/en/408.pdf (Accessed on December 10, 2012).Google Scholar
World Health Organization (WHO). (2004). Better Palliative Care for Older People. Copenhagen: World Health Organization (WHO).Google Scholar
Wright, L.M. & Leahey, M. (2009). Nurses and families: A Guide to Family Assessment and Intervention. Philadelphia: F.A. Davis.Google Scholar
Öresland, S., Määttä, S., Norberg, A., et al. (2008). Nurses as guests or professionals in home health care. Nursing Ethics, 3, 371–383.CrossRefGoogle Scholar