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The experience of being an informal “carer” for a person with cancer: A meta-synthesis of qualitative studies

Published online by Cambridge University Press:  10 March 2014

Karen Seal ,
Craig D. Murray  and
Lesley Seddon
Karen Seal
Affiliation:
Lancashire Teaching Hospitals NHS Foundation Trust, Preston, United Kingdom
Craig D. Murray*
Affiliation:
School of Health and Medicine, Lancaster University, Lancaster, United Kingdom
Lesley Seddon
Affiliation:
Lancashire Teaching Hospitals NHS Foundation Trust, Preston, United Kingdom
*
Address correspondence and reprint requests to: Craig D. Murray, School of Health and Medicine, Furness Building, Lancaster University, Lancaster LA1 4YT, United Kingdom. E-mail: c.murray@lancaster.ac.uk.
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Abstract

Objective:

Increasingly, family or friends are providing care to those with cancer. However, the majority of those assuming the caring role have no prior knowledge related to the provision of care. The present study aimed to explore the experiences of informal carers with respect to their role, thus determining ways that services may support transition to this role.

Method:

In order to obtain an in-depth view of such experience, a qualitative meta-synthesis was employed to review the findings of 17 studies.

Results:

Out of this synthesis, three main concepts were developed: (1) identity and adopting the caring role, (2) the perception of care tasks, and (3) relationship dynamic changes as a result of caring.

Significance of Results:

The implications for professional practice are discussed.

Keywords

CancerCarerCopingAdjustmentQualitativeSynthesis
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 493 - 504
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Atkins, S., Lewin, S., Smith, H., et al. (2008). Conducting a meta-ethnography of qualitative literature: Lessons learnt. BMC Medical Research Methodology, 8, 21.Google Scholar
Carlson, L.E., Ottenbreit, N., St. Pierre, P.M., et al. (2001). Partner understanding of the breast and prostate cancer experience. Cancer Nursing, 24, 231–239.Google Scholar
Clemmer, S.J., Ward-Griffin, C. & Forbes, D. (2008). Family members providing home-based palliative care to older adults: The enactment of multiple roles. Canadian Journal on Aging, 27, 267–283.Google Scholar
Coristine, M., Crooks, D., Grunfeld, E., et al. (2003). Caregiving for women with advanced breast cancer. Psycho-Oncology, 12, 709–719.Google Scholar
Donnelly, M., Anderson, L.A., Johnston, B.T., et al. (2008). Oesophageal cancer: Caregiver mental health and strain. Psycho-Oncology, 17, 1196–1201.Google Scholar
Doumit, M., Abu-Saad Huijer, H., Kelley, J.H., et al. (2008). The lived experience of Lebanese family caregivers of cancer patients. Cancer Nursing, 31, E36–E42.Google Scholar
Dubenske, L.I., Wen, K.Y., Gustafson, D.H., et al. (2008). Caregivers' differing needs across key experiences of the advanced cancer disease trajectory. Palliative & Supportive Care, 6, 265–272.Google Scholar
Elliott, R., Fischer, C.T. & Rennie, D.L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. The British Journal of Clinical Psychology, 38, 215–229.Google Scholar
Eriksson, E. & Lauri, S. (2000). Informational and emotional support for cancer patients' relatives. European Journal of Cancer Care, 9, 8–15.Google Scholar
Harding, R., Higginson, I.J., Leam, C., et al. (2004). Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. Journal of Pain and Symptom Management, 27, 396–408.Google Scholar
Hinton, J. (1994). Which patients with terminal cancer are admitted from home care? Palliative Medicine, 8, 197–210.Google Scholar
Johnson, S.M. (2002). Emotionally focused couple therapy with trauma survivors: Strengthening attachment bonds. New York: Guildford Press.Google Scholar
Kellehear, A. (2008). Understanding the social and cultural dimensions of family caregiving. In Family carers in palliative care. Hudson, P. & Payne, S. (eds.), pp. 21–36. Oxford: Oxford University Press.Google Scholar
Linderholm, M. & Friedrischsen, M. (2010). A desire to be seen: Family caregivers' experiences of their caring role in palliative home care. Cancer Nursing, 33, 28–36.Google Scholar
McClean, L.M. & Nissim, R. (2007). Marital therapy for couples facing advanced cancer: Case review. Palliative & Supportive Care, 5, 303–313.Google Scholar
McConigley, R., Halkett, G., Lobb, E., et al. (2010). Caring for someone with high-grade glioma: A time of rapid change for caregivers. Palliative Medicine, 24, 473–479.Google Scholar
Milne, D. & Quinn, K. (2008). Family carers of people with advanced cancer. In Family carers in palliative care. Hudson, P. & Payne, S. (eds.), pp. 211–230. Oxford: Oxford University Press.Google Scholar
Mohr, D.C., Moran, P.J., Kohn, C., et al. (2003). Couples therapy at end of life. Psycho-Oncology, 12, 620–627.Google Scholar
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.Google Scholar
Molyneaux, V., Butchard, S., Simpson, J., et al. (2011). Reconsidering the term “carer”: A critique of the universal adoption of the term “carer.” Ageing and Society, 31, 422–437.Google Scholar
Noblit, G.W. & Hare, R.D. (1988). Meta-ethnography: Synthesising qualitative studies. London: Sage Publications.Google Scholar
Proot, I.M., Abu-Saad, H.H., Crebolder, H.F.J.M., 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
Robinson, K.D., Angeletti, K.A., Barg, F.K., et al. (1998). The development of a family caregiver cancer education program. Journal of Cancer Education, 13, 116–121.Google Scholar
Sandelowski, M., Docherty, S. & Emden, C. (1997). Qualitative metasynthesis: Issues and techniques. Research in Nursing & Health, 20, 365–371.Google Scholar
Schmer, C., Ward-Smith, P., Latham, S., et al. (2008). When a family member has a malignant brain tumor: The caregiver perspective. Journal of Neuroscience Nursing, 40, 78–84.Google Scholar
Schubart, J.R, Kinzie, M.B. & Farace, E. (2007). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10, 61–72.Google Scholar
Seale, C. (2000). Changing patterns of death and dying. Social Science & Medicine, 51, 917–930.Google Scholar
Shields, C.G., Travis, L.A. & Rousseau, S.L. (2000). Martial attachment and adjustment in older couples coping with cancer. Aging and Mental Health, 4, 223–233.Google Scholar
Sinding, C. (2003). “Because you know there's an end to it”: Caring for a relative or friend with advanced breast cancer. Palliative & Supportive Care, 1, 153–163.Google Scholar
Smith, P. (2009). The family caregiver's journey in end-of-life care: Recognising and identifying with the role of carer. International Journal on Disability and Human Development, 8, 67–73.Google Scholar
Stenberg, U., Ruland, C.M. & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19, 1013–1025.Google Scholar
Teschendorf, B., Schwartz, C., Ferrans, C.E., et al. (2007). Caregiver role stress: When families become providers. CancerCulture and Literacy, 14, 183–189.Google Scholar
Thomas, C. (1993). Deconstructing concepts of care. Sociology, 27, 649–669.Google Scholar
Thomas, C., Morris, S.M. & Harman, J.C. (2002). Companions through cancer: The care given by informal carers in cancer contexts. Social Science & Medicine, 54, 529–544.Google Scholar
Walsh, S.M., Estrada, G.B. & Hogan, N. (2004). Individual telephone support for family caregivers of seriously ill cancer patients. Medical-Surgical Nursing, 13, 181–189.Google Scholar
Wells, J.N., Cagle, C.S., Bradley, P., et al. (2008). Voices of Mexican American caregivers for family members with cancer: On becoming stronger. Journal of Transcultural Nursing, 19, 223–233.Google Scholar
Williams, L.A. (2007). Whatever it takes: Informal caregiving dynamics in blood and bone marrow transplantation. Oncology Nursing Forum, 34, 379–387.Google Scholar
Wong, W.K.T. & Ussher, J. (2009). Bereaved informal cancer carers making sense of their palliative care experiences at home. Health & Social Care in the Community, 17, 274–282.Google Scholar
Wong, W.K.T., Ussher, J. & Perz, J. (2009). Strength through adversity: Bereaved cancer carers' accounts of rewards and personal growth from caring. Palliative & Supportive Care, 7, 187–196.Google Scholar