Uncovering an invisible network of direct caregivers at the end of life: a population study

David Currow, Professor, Discipline of Palliative and Supportive Services, Flinders University, Australia, explains the background to a longer article that has been selected as ‘Editor’s choice’ in the Special Issue of Palliative Medicine published in July.

Professor David Currow

Professor David Currow

As hospice/palliative care services focus more on improving the health of caregivers, it is important to think about the ways that our services interact with them. How often do you and I simply flick to the front of a patient’s notes and assume that whoever is listed as next-of-kin is actually the person who will act as this patient’s principal caregiver? It is a simple act with enormous consequences. The person listed as next-of-kin may well be a significant person in the patient’s life; however, this paper suggests that – more often than not – the designated ‘next-of-kin’ is not the person who is going to provide the most important care for this patient. If we simply assume that the ‘next-of-kin’ is the actual caregiver, we miss great opportunities to provide better support to the patients whom we serve as well as the many people who are taking on a significant role in providing support for someone at the end of life.

This study therefore really sought to understand who was providing care in the community. The ‘whole of population’ methodology means that the results are representative of our whole community, irrespective of whether people had had any contact with a palliative care service or not. Not surprisingly, there were many  people providing intense care for a person dying with a life-limiting illness without being a first degree relative. From a clinical context, the real challenge becomes how to identify these caregivers and make contact with them in order to ensure that we have assessed their needs and are providing the best possible support for them while in the role and subsequently. This takes effort and time for each of us as clinicians. Many of these people are unlikely to identify themselves as ‘caregivers’ but without their help the chance of community-based care is markedly diminished.

This is both the opportunity and the challenge for us as we ensure that we are more attuned to the needs of caregivers.

All about family carers: the Special Issue of  Palliative Medicine

All about family carers: the Special Issue of Palliative Medicine

To find out more…
This post relates to a longer article, ‘Uncovering an invisible network of direct caregivers at the end of life: a population study by Catherine M Burns, Amy P Abernethy, Eleanora Dal Grande and David C Currow Palliat Med 2013 27 (7): 608-615. Originally published online 15 April 2013 DOI: 10.1177/0269216313483664.

EAPC members and registered users of the EAPC website can download a free copy of this and other articles on family carers in this issue of Palliative Medicine (Just follow the instructions in the top right-hand corner of EAPC home page to register or login, and scroll down to download the article). Click here to view other EAPC-originated papers on the EAPC website. 

Click here to read a post from Professors Gunn Grande and Sheila Payne, guest editors of this Special Issue of Palliative Medicine.

Coming up…
We’ll be publishing a post from Nathan Davies on family carers of people with dementia.

This entry was posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH and tagged . Bookmark the permalink.

3 Responses to Uncovering an invisible network of direct caregivers at the end of life: a population study

  1. Pingback: Uncovering an invisible network of direct caregivers at the end of life: a population study | EAPC Blog | All Things Palliative - Article Feed

  2. Dear Professor David Currow,
    I want to express all my interest in Your precious Article I am studying deeply. I am a Linguist, and I want to give all the Linguistic reality of my studies to these researches. The field in which I study is the Pediatric Palliative Care, the Preverbal Age of the Pediatric Palliative Care. The PreverbalOncologicChild must be understood in His whole behaviour, babbling, signs and gestures, millisecondly. I want to help HealthCareProfessionals to detect and interpret all the PreverbalOncologicChild’s ‘Private World’, His feelings, fear, anguish, isolation, stress, distress, pain, translated into His behaviour, because the PreverbalChild in Pain asks for His being understood. He wants to feel understood. This is what my Little Giampaolo (born 5th March 2009 and died the 17th October 2010), asked for, and Nobody could understand Him because He was too little. I am His aunt. That’s why I began many and many studies for Him, but as I am not a Health Care Professional I was Never permitted to approach Him. It’s to His Memory that my studies and researches are growing up, hour by hour, in my best practice at the Pediatric Hospital, where I observePreverbalChildren. The mission of my studies and researches is to be-and-do all my best for All the PreverbalOncologicChildren in the World.
    Luisella Magnani http://www.luisellamagnani.it

  3. You can definitely see your enthusiasm within the work
    yyou write. The sector hopes for even more passionate writers
    like you who are not afraid to sayy how they believe.

    All thee time go ater your heart.

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