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Feelings of rewards among family caregivers during ongoing palliative care

Published online by Cambridge University Press:  16 October 2013

Anette Henriksson ,
Ida Carlander  and
Kristofer Årestedt
Anette Henriksson*
Affiliation:
Palliative Research Centre, Ersta Sköndal University Collage and Ersta Hospital, Stockholm, Sweden; Capio Geriatrics, Palliative care unit, Dalens hospital, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden
Ida Carlander
Affiliation:
Palliative Research Centre, Ersta Sköndal University Collage and Ersta Hospital, Stockholm, Sweden; Department of Learning, Informatics, Management and Ethics Medical Management Center, Karolinska Institutet, Stockholm, Sweden
Kristofer Årestedt
Affiliation:
Department of Medical Health Sciences, Linköping University, Linköping, Sweden; School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden; Palliative Research Centre, Ersta Sköndal University Collage and Ersta Hospital, Stockholm, Sweden
*
Address correspondence and reprint requests to: Anette Henriksson, Ersta Sköndal University College, Ersta Hospital–Palliative Research Centre, Stockholm, Sweden. E-mail: [email protected]
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Abstract

Objectives:

Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.

Methods:

The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann–Whitney U test was used to compare differences between groups of different sex and age.

Results:

Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.

Significance of results:

Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

Keywords

Palliative careFamily caregiversRewardsCaregiving
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1509 - 1517
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 the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15, 1158–1169.Google Scholar
Aoun, S.M., Kristjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19, 551–555.CrossRefGoogle ScholarPubMed
Applebaum, A.J. & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative and Supportive Care, 11(3), 231–252.CrossRefGoogle ScholarPubMed
Archbold, G.P. & Stewart, B. (1996). Family caregiving inventory. Portland: Oregon Health Sciences University.Google Scholar
Brazil, K., Bedard, M., Willison, K., et al. (2003). Caregiving and its impact on families of the terminally ill. Aging Mental Health, 7, 376–382.CrossRefGoogle ScholarPubMed
Carlander, I., Sahlberg-Blom, E., Hellstrom, I., et al. (2010). The modified self: Family caregivers' experiences of caring for a dying family member at home. Journal of Clinical Nursing, 20, 1097–1105.CrossRefGoogle ScholarPubMed
Carlander, I., Ternestedt, B.M., Sahlberg-Blom, E., et al. (2011). Being me and being us in a family living close to death at home. Qualitative Health Research, 21, 683–695.CrossRefGoogle Scholar
Diehl, M., Coyle, N. & Labouvie-Vief, G. (1996). Age and sex differences in strategies of coping and defense across the life span. Psychology and Aging, 11, 127–139.CrossRefGoogle ScholarPubMed
Eggenberger, S.K. & Nelms, T.P. (2007). Being family: The family experience when an adult member is hospitalized with a critical illness. Journal of Clinical Nursing, 16, 1618–1628.Google Scholar
Given, C.W., Given, B.A., Stommel, M., et al. (1999). The impact of new demands for assistance on caregiver depression: Tests using an inception cohort. Gerontologist, 39, 76–85.Google Scholar
Grande, G. & Ewing, G. (2008). Death at home unlikely if informal carers prefer otherwise: Implications for policy. Palliative Medicine, 22, 971–972.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.Google Scholar
Henriksson, A., Andershed, B., Benzein, E., et al. (2012). Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale, and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness. Palliative Medicine, 26, 930–938.Google Scholar
Henriksson, A., Arestedt, K., Benzein, E., et al. (2013). Effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. Palliative Medicine, 27, 257–264.CrossRefGoogle ScholarPubMed
Hoppes, S. (2005). Meanings and purposes of caring for a family member: An autoethnography. American Journal of Occupational Therapy, 59, 262–272.Google Scholar
Hudson, P. (2004). Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 58–65.Google Scholar
Hudson, P.L. & Hayman-White, K. (2006). Measuring the psychosocial characteristics of family caregivers of palliative care patients: Psychometric properties of nine self-report instruments. Journal of Pain and Symptom Management, 31, 215–228.CrossRefGoogle ScholarPubMed
Hudson, P. & Payne, S. (2009). Family caregivers and palliative care: Current status and agenda for the future. Journal of Palliative Medicine, 14, 864–869.Google Scholar
Hudson, P.L., Aranda, S. & Kristjanson, L.J. (2004). Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. Journal of Palliative Medicine, 7, 19–25.Google Scholar
Hudson, P.L., Aranda, S. & Hayman-White, K. (2005). A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomized controlled trial. Journal of Pain and Symptom Management, 30, 329–41.CrossRefGoogle ScholarPubMed
Hudson, P., Thomas, T., Quinn, K., et al. (2009). Teaching family carers about home-based palliative care: Final results from a group education program. Journal of Pain and Symptom Management, 38, 299–308.Google Scholar
Hudson, P.L., 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, 522–34.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
Koop, P.M. & Strang, V.R. (2003). The bereavement experience following home-based family caregiving for persons with advanced cancer. Clinical Nursing Research, 12, 127–144.Google Scholar
Kramer, B.J. (1997). Gain in the caregiving experience: Where are we? What next? Gerontologist, 37, 218–332.Google Scholar
Lockenhoff, C.E., Costa, P.T. Jr., & Lane, R.D. (2008). Age differences in descriptions of emotional experiences in oneself and others. The Journals of Gerontology, Series B: Psychological Science and Social Science, 63, P92–P99.Google Scholar
Lundh, U. (1999). Family carers, 2: Sources of satisfaction among Swedish carers. British Journal of Nursing, 8, 647–652.Google Scholar
Mangan, P.A., Taylor, K.L., Yabroff, K.R., et al. (2003). Caregiving near the end of life: Unmet needs and potential solutions. Palliative and Supportive Care, 1, 247–259.Google Scholar
Mccorkle, R., Robinson, L., Nuamah, I., et al. (1998). The effects of home nursing care for patients during terminal illness on the bereaved's psychological distress. Nursing Research, 47, 2–10.Google 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., Smith, P. & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.CrossRefGoogle ScholarPubMed
Proot, I.M., Abu-Saad, H.H., Crebolder, H.F., et al. (2003). Vulnerability of family caregivers in terminal palliative care at home: Balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17, 113–121.Google Scholar
Salmon, J.R., Kwak, J., Acquaviva, K.D., et al. (2005). Transformative aspects of caregiving at life's end. Journal of Pain and Symptom Management, 29, 121–129.CrossRefGoogle ScholarPubMed
Sand, L., Olsson, M. & Strang, P. (2010). What are the motives of family members who take responsibility in palliative cancer care? Mortality, 15, 64–88.CrossRefGoogle Scholar
Sinding, C. (2003). “Because you know there's an end to it”: Caring for a relative or friend with advanced breast cancer. Palliative and Supportive Care, 1, 153–163.Google Scholar
Smith, P. (2004). Working with family caregivers in a palliative care setting. In Palliative care nursing: Principles and evidence for practice. Payne, S. et al. (eds.), pp. 326–346. New York: Open University Press.Google Scholar
Stajduhar, K.I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27–35.Google Scholar
Stajduhar, K.I. & Davies, B. (1998). Palliative care at home: Reflections on HIV/AIDS family caregiving experiences. Journal of Palliative Care, 14, 14–22.CrossRefGoogle ScholarPubMed
Stajduhar, K.I. & Davies, B. (2005). Variations in and factors influencing family members' decisions for palliative home care. Palliative Medicine, 19, 21–32.CrossRefGoogle ScholarPubMed
Stajduhar, K.I., Martin, W.L., Barwich, D., et al. (2008). Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nursing, 31, 77–85.Google Scholar
Waldrop, D.P. (2007). Caregiver grief in terminal illness and bereavement: A mixed-methods study. Health and Social Work, 32, 197–206.Google 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.Google Scholar
Wolff, J.L., Dy, S.M., Frick, K.D., et al. (2007). End-of-life care: Findings from a national survey of informal caregivers. The Archives of Internal Medicine, 167, 40–46.Google Scholar
Wong, W.K., Ussher, J. & Perz, J. (2009). Strength through adversity: Bereaved cancer carers' accounts of rewards and personal growth from caring. Palliative and Supportive Care, 7, 187–196.Google Scholar
Zapart, S., Kenny, P., Hall, J., et al. (2007). Home-based palliative care in Sydney, Australia: The carer's perspective on the provision of informal care. Health and Social Care Community, 15, 97–107.Google Scholar