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Clinical Implications for Supporting Caregivers at the End-of-Life: Findings and from a Qualitative Study

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Abstract

Despite families providing considerable care at end of life, there are substantial gaps in the provision of supportive care. A qualitative interview study was conducted with 17 caregivers of people supported by an adult hospice to explore the support needs of families. Family members readily identified the ways in which the diagnosis of a life-limiting illness impacted on them and the family as a whole, not just the patient. Implications for practice demonstrate the need to intervene at a family and relational level prior to bereavement, in order to mitigate complicated grief for the surviving family members. Such an approach offers a fruitful prospective alternative to supporting caregivers post-bereavement.

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References

  • Aoun, S., McConigley, R., Abernethy, A., & Currow, D. C. (2010). Caregivers of people with neurodegenerative diseases: Profile and unmet needs from a population-based survey in South Australia. Journal of Palliative Medicine, 13, 653–661.

    Article  PubMed  Google Scholar 

  • Bakas, T., Lewis, R. R., & Parsons, J. E. (2001). Caregiving tasks among family caregivers of patients with lung cancer. Oncology Nursing Forum, 28, 847–854.

    PubMed  Google Scholar 

  • Ballard-Reisch, D. S., & Letner, J. A. (2003). Centering families in cancer communication research: Acknowledging the impact of support, culture and process on client/provider communication in cancer management. Patient Education and Counselling, 50, 61–66.

    Article  Google Scholar 

  • Boerner, K. & Mock, S. E. (2011). Impact of patient suffering on caregiver well-being: The case of amyotrophic lateral sclerosis patients and their caregivers. Psychology Health and Medicine [On-line].

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.

    Article  Google Scholar 

  • BrintzenhofeSzoc, K., Smith, E., Zabora, R., et al. (2001). Screening to predict complicated grief in spouses of cancer patients. Cancer Practice, 7, 233–239.

    Article  Google Scholar 

  • Funch, D. P., & Marshall, J. (1983). The role of stress, social support and age in survival from breast cancer. Journal of Psychosomatic Research, 27, 77–83.

    Article  PubMed  Google Scholar 

  • Grassi, L. (2007). Bereavement in families with relatives dying of cancer. Current Opinion in Supportive and Palliative Care, 1, 43–49.

    Article  PubMed  Google Scholar 

  • Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? Field Methods, 18, 59–82.

    Article  Google Scholar 

  • Guldin, M. B., Vedsted, P., Zachariae, R., Olesen, F., & Jensen, A. B. (2011). Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Supportive Care in Cancer, eprint ahead of publishing.

  • Help the hospices. (2010). Hospice UK Online. Available: http://www.helpthehospices.org.uk/media-centre/press-releases/carers-week/.

  • Henderson, J., & Forbat, L. (2002). Relationship-based social policy: Personal and policy constructions of ‘care’. Critical Social Policy, 22, 669–687.

    Article  Google Scholar 

  • Janssen, D. J., Spruit, M. A., Wouters, E. F., & Schols, J. M. (2012). Family caregiving in advanced chronic organ failure. Journal of the American Medical Director’s Association [e-pub ahead of print].

  • Kissane, D. W., Bloch, S., Burns, W. I., Patrick, J. D., Wallace, C., & MacKenzie, D. (1994). Perceptions of family functioning and cancer. Psychooncology, 3, 259–269.

    Article  Google Scholar 

  • Kissane, D. W., McKenzie, M., McKenzie, D. P., Forbes, A., O’Neill, I., & Bloch, S. (2003). Psychosocial morbidity associated with patterns of family functioning in palliative care: Baseline data from the family focused grief therapy controlled trial. Palliative Medicine, 17, 527–537.

    Article  PubMed  Google Scholar 

  • Madan-Swain, A., Sexson, S. B., Brown, R. T., & Ragab, A. (1993). Family adaptation and coping among siblings of cancer patients, their brothers and sisters, and nonclinical controls. The American Journal of Family Therapy, 21, 60–70.

    Article  Google Scholar 

  • Mehta, A., Cohen, S. R., & Chan, L. S. (2009). Palliative care: A need for a family systems approach. Palliative and Supportive Care, 7, 235–243.

    Article  PubMed  Google Scholar 

  • Payne, S., Smith, P., & Dean, P. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.

    Article  PubMed  Google Scholar 

  • Persson, C., Östlund, U., Wengström, Y., & Gustavsson, P. (2008). Health related quality of life in significant others of patients dying from lung cancer. Palliative Medicine, 22, 239–247.

    Article  PubMed  Google Scholar 

  • Reynolds, P. & Kaplan, G. (2008). Social connections and risk for cancer: Prospective evidence from the Alameda County Study. Behavioral Medicine, Fall, 16, 101–110.

    Google Scholar 

  • Rolland, J. S. (1994). Families, illness and disability: An integrative treatment model. New York: Basic Books.

    Google Scholar 

  • Rolland, J. S. (1999). Parental illness and disability: A family systems framework. Journal of Family Therapy, 21, 242–266.

    Article  Google Scholar 

  • Scottish Executive. (2006). Research Governance Framework for Health and Community Care http://www.research.luht.scot.nhs.uk/ResearchGovernance/ResearchGovernanceFramework.pdf: Scottish Executive.

  • Shear, M. L., Simon, N., Wall, M., Zisook, S., Neimeyer, R., Duan, N., et al. (2011). Complicated grief and related bereavement issues for DSM-5. Depression and Anxiety, 28, 103–117.

    Article  PubMed  Google Scholar 

  • Sprehn, G. C., Chambers, J. E., Syakin, A. J., Konski, A., & Johnstone, A. S. (2009). Decreased cancer survival in individuals separated at time of diagnosis. Cancer, 115, 5108–5116.

    Article  PubMed  Google Scholar 

  • Thomas, C., & Morris, S. M. (2002). Informal carers in cancer contexts. European Journal of Cancer Care, 11, 178–182.

    Article  PubMed  Google Scholar 

  • Tomarken, A., Holland, J., Schachter, S., et al. (2008). Factors of complicated grief pre-death in caregivers of cancer patients. Psychooncology, 17, 105–111.

    Article  PubMed  Google Scholar 

  • Tyndall, L. E., Hodgson, J. L., & Lamson, A. L. (2012). Medical family therapy: A theoretical and empirical review. Contemporary Family Therapy [online first], Doi 10.1007/s10591-012-9183-9.

  • Ungureanu, I., & Sandberg, J. G. (2008). Caring for dying children and their families: MFTs working at the gates of the Elysian fields. Contemporary Family Therapy, 30, 75–91.

    Article  Google Scholar 

  • Wellisch, D. K., Gritz, E. R., Schain, W., Wang, H., & Siau, J. (1992). Psychological functioning of daughters of breast cancer patients. Part II: Characterizing the distressed daughter of the breast cancer patient. Psychosomatics, 33, 171–179.

    Article  PubMed  Google Scholar 

  • Wennman-Larsen, A., Persson, C., Ostlund, U., Wengstrom, Y., & Gustavsoon, J. P. (2009). Development in quality of relationship between the significant other and the lung cancer patient as perceived by the significant other. European Journal of Oncology Nursing, 12, 430–435.

    Article  Google Scholar 

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Acknowledgments

Many thanks to Caroline McDermid and Gail Allan who helped conduct interviews, and Marjory Mackay for her help with the recruitment. Thanks also to Elaine Cameron and service user advisor Linda Foster who helped devise the interview schedule.

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Correspondence to Liz Forbat.

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Forbat, L., McManus, E. & Haraldsdottir, E. Clinical Implications for Supporting Caregivers at the End-of-Life: Findings and from a Qualitative Study. Contemp Fam Ther 34, 282–292 (2012). https://doi.org/10.1007/s10591-012-9194-6

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  • DOI: https://doi.org/10.1007/s10591-012-9194-6

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