Strengths of family carers: Looking after a terminally ill adult under 65 years of age
DOI:
https://doi.org/10.11157/anzswj-vol34iss2id879Keywords:
family carers, palliative care, under 65, social work, strengthsAbstract
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.
References
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. https://doi.org/10.1007/s10823-017-9327-3
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. https://doi.org/10.1089/jpm.2014.0320
Blum, K., & Sherman, D. W. (2010). Understanding the experience of caregivers: A focus on transitions. Seminars in Oncology Nursing, 26(4), 243–258. https://doi.org/10.1016/j.soncn.2010.08.005
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. https://doi.org/10.1080/02682621003707423
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. https://doi.org/10.1177/0269216316663855
Feudtner, C. (2014). Responses from palliative care: Hope is like water. Perspectives in Biology and Medicine, 57(4), 555–557. https://doi.org/10.1353/pbm.2014.0039
Folkman, S. (2010). Stress, coping, and hope. Psycho-Oncology, 19(9), 901–908. https://doi.org/10.1002/pon.1836
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. https://doi.org/10.1177/0269216310371411
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. https://doi.org/10.1017/S1478951513001028
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. https://doi.org/10.1177/0269216312469263
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. www.heathermcleodnz.com
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. https://doi.org/10.1177/0269216314565706
Nowitz, L. (2005). Geriatrie care management: Spiritual challenges. Journal of Gerontological Social Work, 45(1–2), 185–201. https://doi.org/10.1300/J083v45n01_11
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. https://doi.org/10.1111/j.1369-7625.2012.00773.x
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. https://doi.org/10.1080/01634372.2014.881451
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. https://doi.org/10.1177/0269216316649127
Sque, M., Walker, W., & Long-Sutehall, T. (2014). Research with bereaved families: A framework for ethical decision-making. Nursing Ethics, 21(8), 946–955. https://doi.org/10.1177/0969733014521097
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. https://doi.org/10.1002/pon.1983
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. https://doi.org/10.1080/15332985.2015.1080206
Ward, L., & Barnes, M. (2016). Transforming practice with older people through an ethic of care. British Journal of Social Work, 46(4), 906–922. https://doi.org/10.1093/bjsw/bcv029
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. https://doi.org/10.1177/0269216316653275
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. https://doi.org/10.1017/S1478951513001235
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Aotearoa New Zealand Association of Social Workers
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
By completing the online submission process, you confirm you accept this agreement. The following is the entire agreement between you and the Aotearoa New Zealand Association of Social Workers (ANZASW) and it may be modified only in writing.
You and any co-authors
If you are completing this agreement on behalf of co-authors, you confirm that you are acting on their behalf with their knowledge.
First publication
By submitting the work you are:
- granting the ANZASW the right of first publication of this work;
- confirming that the work is original; and
- confirming that the work has not been published in any other form.
Once published, you are free to use the final, accepted version in any way, as outlined below under Copyright.
Copyright
You assign copyright in the final, accepted version of your article to the ANZASW. You and any co-authors of the article retain the right to be identified as authors of the work.
The ANZASW will publish the final, accepted manuscript under a Creative Commons Attribution licence (CC BY 4.0). This licence allows anyone – including you – to share, copy, distribute, transmit, adapt and make commercial use of the work without needing additional permission, provided appropriate attribution is made to the original author or source.
A human-readable summary of the licence is available from http://creativecommons.org/licenses/by/4.0, which includes a link to the full licence text.
Under this licence you can use the final, published version of the article freely – such as depositing a copy in your institutional research repository, uploading a copy to your profile on an academic networking site or including it in a different publication, such as a collection of articles on a topic or in conference proceedings – provided that original publication in Aotearoa New Zealand Social Work is acknowledged.
This agreement has no effect on any pre-publication versions or elements, which remain entirely yours, and to which we claim no right.
Reviewers hold copyright in their own comments and should not be further copied in any way without their permission.
The copyright of others
If your article includes the copyright material of others (e.g. graphs, diagrams etc.), you confirm that your use either:
- falls within the limits of fair dealing for the purposes of criticism and review or fair use; OR
- that you have gained permission from the rights holder for publication in an open access journal.
