Strengths of family carers: Looking after a terminally ill adult under 65 years of age


  • Mary P James Nelson Tasman Hospice University of Canterbury
  • Kate Reid Palliative Care Programme Coordinator. School of Health Sciences, College of Education, University of Canterbury,New Zealand



family carers, palliative care, under 65, social work, strengths


Introduction: To learn of a terminal illness is devastating at any age.  How much more so when it occurs in early or mid-adulthood, when people are busy with family and career goals. Those facing death when under 65 years of age are a group whose voice is virtually invisible in the palliative caregiving literature.  Yet one in every five people die in New Zealand before 65 years of age.  For Māori, almost half will die under the age of 65.

Methods: Eight bereaved family carers were interviewed with particular focus on the strengths that underpinned and sustained them through the spouse’s illness and death. The research utilised a social construction methodology and thematic analysis of the narratives was undertaken to identify the key themes.

Findings: Following analysis, themes emerged relating to the Medical Circle of Care, the Home Circle of Care, Saying Goodbye, and Picking Up the Threads. Further analysis revealed the strengths of love, hope, family, teamwork and resilience in coping with these experiences.

Conclusion: Three key findings for palliative care teams emerge from the research. These are to prioritise support for family carers, to enable access to Social Work, and the provision of targeted support for bereaved family carers.


Author Biographies

Mary P James, Nelson Tasman Hospice University of Canterbury

Mary has a social work career over 35 years in government, health and community organisations as well as in private practice. She has worked as a palliative care Social Worker at Nelson Tasman Hospice since 2007. In 2019, she completed her Masters in Health Science (palliative care) at Canterbury University.

Kate Reid, Palliative Care Programme Coordinator. School of Health Sciences, College of Education, University of Canterbury,New Zealand

Kate is a senior lecturer and Palliative Care Programme Coordinator at the School of Health Sciences at the University of Canterbury. Kate's experience is in the field of palliative care and oncology nursing in a range of roles from clinical practice, management, governance, education and research. She has a particular interest in supporting health professionals and community development to enable people to live until they die and to provide compassionate end of life care.


Alpass, F., Keeling, S., Allen, J., Stevenson, B., & Stephens, C. (2017). Reconciling work and caregiving responsibilities among older workers in New Zealand. Journal of Cross-Cultural Gerontology, 32(3), 323–337.

Bentley, B., & O’Connor, M. (2015). Conducting research interviews with bereaved family carers: When do we ask? Journal of Palliative Medicine, 18(3), 241–245.

Blum, K., & Sherman, D. W. (2010). Understanding the experience of caregivers: A focus on transitions. Seminars in Oncology Nursing, 26(4), 243–258.

Bowden-Tucker, J. (2012). End of life care in the home: Supporting and sustaining family caregivers. Victoria University.

Cadell, S., Shermack, S., & Johnston, M. (2011). Discovering strengths and growth in palliative care. In T. Altilio & S. Otis-Green (Eds.), Oxford Textbook of Palliative Social Work (pp. 215–222). New York: Oxford University Press.

Chai, H., Guirriere, D. N., Zagorski, B., Kennedy, J., & Coyte, P. C. (2013). The size, share, and predictors of publicly financed healthcare costs in the home setting over the palliative care trajectory: A prospective study. Journal of Palliative Care, 29(3), 154–162.

Corden, A., Hirst, M., & Nice, K. (2010). Death of a partner: Financial implications and experience of loss. Bereavement Care, 29(1), 23–28.

DiGiacomo, M., Hatano, Y., Phillips, J., Lewis, J., Abernethy, A. P., & Currow, D. C. (2017). Caregiver characteristics and bereavement needs: Findings from a population study. Palliative Medicine, 31(5), 465–474.

Feudtner, C. (2014). Responses from palliative care: Hope is like water. Perspectives in Biology and Medicine, 57(4), 555–557.

Folkman, S. (2010). Stress, coping, and hope. Psycho-Oncology, 19(9), 901–908.

Funk, L., Stajduhar, K., Toye, C., Aoun, S., Grande, G., & Todd, C. (2010). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998-2008). Palliative Medicine, 24(6), 594–607.

Giesbrecht, M., Wolse, F., Crooks, V. A., & Stajduhar, K. (2015). Identifying socio-environmental factors that facilitate resilience among Canadian palliative family caregivers: A qualitative case study. Palliative and Supportive Care, 13(03), 555–565.

Given, B. A., & Reinhard, S. C. (2017). Caregiving at the end of life: The challenges for family caregivers. Journal of the American Society on Aging, 41(1), 50–57.

Gott, M., Frey, R., Robinson, J., Boyd, M., O’Callaghan, A., Richards, N., & Snow, B. (2013). The nature of, and reasons for, ‘inappropriate’ hospitalisations among patients with palliative care needs: A qualitative exploration of the views of generalist palliative care providers. Palliative Medicine, 27(8), 747–756.

Hospice New Zealand. (2019). Ngā paerewa paiuri tāngata: Standards for palliative care 2019. Wellington: Hospice New Zealand.

Madsen, W. C., & Gillespie, K. (2014). Collaborative helping: A strengths framework for home-based services. Hoboken: Wiley.

McCarthy, J. R. (2012). The powerful relational language of ‘family’: Togetherness, belonging and personhood. The Sociological Review, 60(1), 68–90.

McLeod, H. (2016). The Need for Palliative Care in New Zealand (pp. 1–96) [Technical Report]. Ministry of Health.

Ministry of Health. (2014). Palliative care and Māori from a health literacy perspective. Wellington: Ministry of Health.

Morris, S. M., King, C., Turner, M., & Payne, S. (2015). Family carers providing support to a person dying in the home setting: A narrative literature review. Palliative Medicine, 29(6), 487–495.

Nowitz, L. (2005). Geriatrie care management: Spiritual challenges. Journal of Gerontological Social Work, 45(1–2), 185–201.

Parton, N. (2003). Rethinking ‘professional’ practice: The contributions of social constructionism and the feminist ‘ethics of care’. The British Journal of Social Work, 33(1), 1–16.

Ray, R. A., Brown, J., & Street, A. F. (2014). Dying with motor neurone disease, what can we learn from family caregivers?: Family experiences of dying in MND. Health Expectations, 17(4), 466–476.

Rosenthal Gelman, C., Sokoloff, T., Graziani, N., Arias, E., & Peralta, A. (2014). Individually-tailored support for ethnically-diverse caregivers: Enhancing our understanding of what is needed and what works. Journal of Gerontological Social Work, 57(6–7), 662–680.

Roulston, A., Campbell, A., Cairnduff, V., Fitzpatrick, D., Donnelly, C., & Gavin, A. (2017). Bereavement outcomes: A quantitative survey identifying risk factors in informal carers bereaved through cancer. Palliative Medicine, 31(2), 162–170.

Sque, M., Walker, W., & Long-Sutehall, T. (2014). Research with bereaved families: A framework for ethical decision-making. Nursing Ethics, 21(8), 946–955.

Swinton, J. (2017). Dementia—Living in the memories of God. London: SCM Press

Tomarken, A., Roth, A., Holland, J., Ganz, O., Schachter, S., Kose, G., Ramirez, P. M., Allen, R., & Nelson, C. J. (2012). Examining the role of trauma, personality, and meaning in young prolonged grievers: Young prolonged grief. Psycho-Oncology, 21(7), 771–777.

Tonkin, L. (1999). Riding the storms: A book about loss and grief for older people. Age Concern Canterbury Inc.

Unson, C., Flynn, D., Haymes, E., Sancho, D., & Glendon, M. A. (2016). Predictors of types of caregiver burden. Social Work in Mental Health, 14(1), 82–101.

Ward, L., & Barnes, M. (2016). Transforming practice with older people through an ethic of care. British Journal of Social Work, 46(4), 906–922.

Williams, L. A., Giddings, L. S., Bellamy, G., & Gott, M. (2017). ‘Because it’s the wife who has to look after the man’: A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life. Palliative Medicine, 31(3), 223–230.

Wittenberg-Lyles, E., Washington, K., Oliver, D. P., Shaunfield, S., Gage, L. A., Mooney, M., & Lewis, A. (2015). “It is the ‘starting over’ part that is so hard”: Using an online group to support hospice bereavement. Palliative and Supportive Care, 13(02), 351–357.




How to Cite

James, M. P., & Reid, K. (2022). Strengths of family carers: Looking after a terminally ill adult under 65 years of age. Aotearoa New Zealand Social Work, 34(2), 5–15.



Original Articles