Caregiving at the margins in palliative care

CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – summer holidays are always a great time to catch up on articles you may have missed. Today, we’re republishing a post by Ashley Mollison, a PhD student, and Kelli Stajduhar, a professor of nursing, both from University of Victoria, Canada, whose research article was our ‘Editor’s Choice’ from ‘Palliative Medicine’ in  July 2020. And there’s a free copy of the full article to download too …

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 Open Access  article in ‘Palliative Medicine’. 


Ashley Mollison (left) and Kelli Stajduhar. Photo: UVic Photo Services.

Healthcare systems in the global north rely heavily on the informal work of family caregivers. While research on family caregiving in palliative care exists, most has occurred with caregivers who are housed, middle class, white, and who have networks of social support to draw on. In our recent Palliative Medicine article, we report on the experiences of a less visible group of ‘family’ caregivers – those who provide care and support for people positioned as structurally vulnerable – those living in poverty, vulnerably housed, racialised, and experiencing discrimination because of mental health and substance use issues.

Like much of the research on family caregiving, our findings suggest there are deleterious effects on physical and emotional wellbeing. Our study also reveals that while ‘family’ caregivers play pivotal roles in providing end-of-life care for structurally vulnerable populations, ‘who’ these family caregivers are, and their experiences differ from much of what has previously been published. In our study, family caregivers were themselves experiencing structural vulnerabilities – and sometimes even on a palliative trajectory – resulting in significant inequities and challenges in access to support and ability to provide care.

Poverty and unstable housing was an overarching factor shaping caregiving experiences, contributing significant stress to the already high demands of caregiving at end of life. While some were making the decision between paying rent and buying food, others were squeaking by on low income from precarious employment, ineligible for ‘paid’ leave.

Caregivers faced barriers related to poverty, homelessness and substance use related stigma. Not all caregivers used substances, but those who did found themselves using more to cope with the toll of caregiving. Others faced discrimination trying to access needed pain medications for their loved ones – the assumption being that drugs would be diverted for the caregivers’ use. Due to stigma and discrimination, their capacity to fulfil a caregiving role was significantly hampered, restricting opportunities to give care or facilitate an individual’s request to be cared for and die ‘at home’.

Dying at home was not a possibility for many of our participants. There was often a lack of safe, secure and stable housing where care could be provided. The places where people lived (e.g., shelters, transitional and supportive housing) were often deemed ‘unsafe’ for home care services to assist and support caregivers in their role. Declining physical health and greater care needs actually increased care recipients’ risk of being evicted and losing their sheltered, transitional, or supportive housing. Restrictive guest and co-habitation policies prevented caregivers from living with, staying over, or spending time with their loved ones.

Complex relational tensions were also found to exist. Caregivers commonly shared how they were forced to delicately navigate issues of power, trust and control, particularly over decision-making within the caregiver/recipient relationship. It was challenging for caregivers to access and advocate for quality care when they and their loved ones were often assumed to be incapable of making ‘good’ and ‘healthy’ decisions. Street family and friends, despite their close relationship with care recipients, shared how they were often left out of conversations and critical decisions because they were not deemed ‘family’ by legal and healthcare systems.

Overall, we found that one-size-fits-all caregiver supports that currently exist in Canada (e.g., palliative home care and employment insurance programmes) hold little relevance for structurally vulnerable populations. Engaging with family caregivers in these contexts emerged as missing and necessary.

Equity in Palliative Approaches to Care (ePAC)

At the University of Victoria, we are mobilising these findings through our ePAC Collaborative. Members of the collaborative work together to conduct research with local, national and international partners, and develop resources and tools, programmes, and services aimed at improving access to quality care for people positioned as structurally vulnerable. Our projects are building capacity among people who live and work in the inner city to adapt palliative care knowledge, while working with the mainstream healthcare system to create approaches and systems that are more flexible and safe, to conceptualise family caregiving in all its forms.


More about the authors…

Ashley Mollison, MA, is a PhD student in the Social Dimensions of Health program at UVic (University of Victoria) and the Equity in Palliative Approaches to Care (ePAC) project coordinator. In 2020, Ashley was awarded the prestigious Vanier Canada Graduate Scholarship. Dr Kelli Stajduhar, RN, PhD, FCAHS, is a professor at the UVic School of Nursing and Institute on Aging & Lifelong Health, and leads the ePAC collaborative. For more information and to join our newsletter, please visit: https://www.equityinpalliativecare.com/

DOWNLOAD A COPY OF THE FULL ARTICLE IN PALLIATIVE MEDICINE (OPEN ACCESS)
This post relates to the longer article,‘Caregiving at the margins: An ethnographic exploration of family caregivers’ experiences providing care for structurally vulnerable populations at the end of life’ by Kelli I Stajduhar, Melissa Giesbrecht, Ashley Mollison, Naheed Dosaniand Ryan McNeil, published in Palliative Medicine 2020, 34 (7); pages: 946–953. Article first published online April 27, 2020. Issue published: 1 July 2020. https://journals.sagepub.com/doi/10.1177/0269216320917875

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE

If you are currently an Individual or Associate EAPC Member you have full access to the Members Only Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too.  Just click here, enter your email address and membership password and choose from the list of journal articles in 2020.

How to join as an Individual/Associate Member, or to renew your membership

  • Individual members are invited to join the EAPC or renew their membership here.
  • Associate Members – all current members of our National Associations are invited to join the EAPC or renew their membership for FREE. Click here.
This entry was posted in EAPC-LINKED JOURNALS, Minority Communities, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH and tagged , , . Bookmark the permalink.

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