Living alone – dying at home? The role of non-kin-carers

This month’s Editor’s Choice from Palliative Medicine . . .

Sabine Pleschberger and Paulina Wosko, both affiliated to the Austrian Interdisciplinary Platform on Ageing, Vienna, Austria, explain the background to a longer article selected as ‘Editor’s Choice’ in the June 2017 issue of Palliative Medicine.

The number of single households has increased vastly over the last decades in Europe. Following Labour Force Survey data, about one-third of all people aged 65+ are living alone.1 With increasing age there is even a higher incidence of living alone. For example, in Austria 59 per cent of all women aged 80+ are living alone (compared to 25.5 per cent of all men in this age group).2 Considering the broad research evidence on the importance of family caregiving to enable older people to die at home, one major question arises: Is it at all possible to die at home if persons live alone?

Sabine Pleschberger (left) and Paulina Wosko pictured with their poster at the 14th EAPC World Congress in Copenhagen, 2015, which inspired them to write this paper for Palliative Medicine

Our paper, now published in the June issue of Palliative Medicine, is based on the findings from an exploratory qualitative study focusing on the role of non-kin-carers in Austria who supported a person living alone at home until their death. We designed and partly wrote the paper while both holding posts at the Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg. (To access the full-text of our paper, please see the links at the end of this post). We were particularly interested in how people aged 80+ and living alone experienced their involvement and engagement and what kind of support they had. We apply the term ‘non-kin-carers’ to people who take care of somebody with whom they are not in a family relationship outside a formal framework. These non-kin-carers are mainly friends or neighbours.

The exciting journey involved in this research study enabled us to learn about non-kin-carers, who are a widely neglected group within the palliative care discourse. Recruiting interview partners, namely ‘ex-non-kin-carers’, though, was challenging and more time-consuming than expected for several reasons. For example, the retrospective design implied that the caring process had to be finished at the time of the interview. As a consequence, health professionals and/or legal attorneys could not be relied on as gatekeepers as initially expected since they had often already lost touch with the non-kin-carers. In addition, non-kin-carers often thought of their engagement as private and some did not even consider themselves as carers. Concurrently, healthcare providers were not aware of non-kin-carers’ involvement. Only specialist palliative care teams formed the exception to the rule.

This afforded several strategies to get a convenient sample of ex-non-kin-carers. Therefore, finishing this study has been a great accomplishment and the results seem to be of significant interest to the wider research community.

Coming back to the initial research question, whether people living alone will be able to die at home, the answer is: “Yes, indeed, if …” Apart from well-documented prerequisites for allowing death at home, for example, access to 24/7 home care services, we found that primarily one or more non-kin-carer(s) who take(s) over responsibility for some basic issues, not necessarily direct care, are of vital importance.

Yet, many questions still remain unanswered and will be followed in further research on care arrangements of older people living at home with a focus on end-of-life care. We would especially like to include the perspective of non-kin-carers as well as of older people living alone, which would allow us to capture the dynamics of these relationships. ‘Fingers crossed’ that we will get funding and will be able to extend our knowledge in this exciting field.

References

  1. Labour Force survey data 2015.
  2. Statistik Austria 2015 – (2015): Haushaltsprognose 2016.

Read the full article in Palliative Medicine

This blog post relates to the longer article, ‘From neighbour to carer. An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone’ by Sabine Pleschberger and Paulina Wosko, published in Palliative Medicine, Vol. 31 (6) 2017, 559-565. DOI 10.1177/0269216316666785. First published online: September 8, 2016.

Download your free copy of this month’s Editor’s Choice article from the EAPC website – just scroll to the end of the abstract to the click here button. 

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

Read earlier Editor’s Choice posts on the EAPC Blog.

 

This entry was posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH. Bookmark the permalink.

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