Caring precariously: Palliative care and welfare worker perspectives on end of life carers

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC

Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’.  

Today, Kristin Bindley, (Faculty of Health, The University of Technology Sydney, Australia) gives the background to the longer article authored with Joanne Lewis, Joanne Travaglia and Michelle DiGiacomo, which was selected as ‘Editor’s Choice’ in the January issue of ‘Palliative Medicine’. 

We were delighted that our article ‘Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare’ was chosen as ‘Editor’s Choice’ for the January issue of Palliative Medicine.

Kristin Bindley with her co-authors and PhD supervision team. Top row, clockwise: Michelle DiGiacomo, Kristin Bindley, Joanne Lewis and Joanne Travaglia.

This paper reports findings from my PhD research, which arose from my immersion in clinical practice as a social worker and bereavement counsellor in Western Sydney; an area of recognised relative socioeconomic disadvantage. During over a decade of providing bereavement counselling and support for families, I frequently observed bereaved carers negotiating income support and housing following the death of someone with a life-limiting illness for whom they cared. These concerns heightened distress in bereavement for many, and often amplified existing physical and mental health issues.

Such was the impetus for the commencement of my PhD study and scoping review of social and structural inequity in bereavement (Bindley et al, 2019). The review identified very limited work in this domain. While research in palliative care and bereavement has often focused on complex grief as a diagnosable disorder, findings of the review suggested that bereavement is both psychologically and socially complicated. Experiences of disadvantage in bereavement appear to accumulate for carers already positioned as vulnerable, and can be related to pre-existing financial strain associated with caring at end-of-life.

It is recognised that income support benefits may be associated with hardship for end of life carers. Yet, carer interactions with social welfare policy and public institutions have been underexplored at end-of-life. We sought to explore how palliative care and welfare sector workers perceive and approach the needs of carers of people with life-limiting illnesses who receive government income support or housing assistance in Western Sydney. Workers reported that financial and housing precariousness were amplified for carers by features of policy and administration, especially for carers who were vulnerable due to lower levels of literacy, being of non-English speaking background, social isolation and negative past experiences of public institutions. Time-consuming application processes, delays, and inconsistent practices alongside increasingly disconnected health and welfare organisations were viewed to contribute to poor outcomes for carers.

Structural burden, or the stress arising from navigating fragmented and complicated health and social care systems (Funk et al, 2019), appears to contribute to inequity for carers. Our findings support the need for a shift from an individual approach, focussed purely on educating or equipping individual carers to navigate systems, to structural strategies that involve tailoring income support benefits to the unique circumstances facing carers at end-of-life. This also includes considering ways in which different sectors can work more collaboratively to promote better outcomes for particularly vulnerable carers. One palliative care worker suggested this necessitates welfare and health workers better understanding “the coalface” of each other’s work.

The next phase of this research reports on findings of in-depth interviews with bereaved carers from the same region. Our intention is to communicate the commentary from both cohorts of workers and carers to improve the experience of carers as they navigate social welfare needs.

References

Bindley K, Lewis J, Travaglia J, and DiGiacomo M. Disadvantaged and disenfranchised in bereavement: a scoping review of social and structural inequity following expected death. Soc Sci Med 2019; 242: 112599.

Funk LM, Dansereau L and Novek S. Carers as system navigators: exploring sources, processes and outcomes of structural burden. Gerontologist 2019; 59(3): 426–435.

Links and resources

• Contact Kristin Bindley by email.
• Follow Kristin on Twitter @KristinBindley
• You can view more posts on Bereavement and Carers on the EAPC blog.

DOWNLOAD THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, ‘Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare’ by Kristin Bindley, Joanne Lewis, Joanne Travaglia, Michelle DiGiacomo, published in Palliative Medicine Volume: 35 issue: 1, page(s): 169-178. Article first published online: October 28, 2020; Issue published: January 1, 2021. https://doi.org/10.1177/0269216320966492.

Read earlier Palliative Medicine ‘Editor’s Choice’ posts on the EAPC blog.

Follow Palliative Medicine on Twitter @palliativemedj   

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