Putting family carers on the agenda in palliative care

Palliative Medicine has just published a Special Issue on ‘Family carers in palliative care’ (July 2013). Guest editors, Gunn Grande and Sheila Payne, welcome you to the Special Issue, which considers ‘family’ in the broadest sense, including relatives, friends and neighbours.

Professor Gunn Grande

Professor Gunn Grande

We have long known that without family carers, care at home at end of life is normally untenable, and that carers provide vital practical and emotional support throughout the palliative trajectory. Still, while palliative care should support both patients and their families, carers’ needs are often overlooked, as patients‘ needs take precedence, and carers’ crucial role as co-workers is often not recognised. Up to recently, carers have also been relatively low on the palliative care research agenda.

Professor Sheila Payne

Professor Sheila Payne

When we first came up with the idea of a Special Issue we were therefore worried that we might perhaps struggle to get enough material to fill a whole Special Issue devoted to carers. Fortunately, on the contrary we had a very strong response to our call for papers and the challenge rather became how to choose which submissions to include. The Special Issue now contains a great selection of quality papers of original research and reviews, encompassing a range of research methods investigating care giving in a variety of settings, both from a population and micro perspective, and covering many new aspects of care giving.

We think the EAPC Congress 2013 similarly demonstrated the increasing interest, volume and quality of research into family carers. Carers were clearly on the agenda: both a pre-conference workshop on ‘Evidence Based Strategies to Support Family Carers’ and a free communication session on ‘Family and Care Givers’ drew large audiences and contained a varied and interesting set of presentations. These were complemented by an expert session and open meeting on bereavement care provision. We also held an open meeting of the International Palliative Care Family Carer Collaborative at the Congress and were encouraged by the strong engagement from participants.

Last month, on 10 June, saw the start of ‘Carers Week’ in the UK, an annual awareness campaign to improve the lives of carers, celebrate their contribution and highlight the challenges of caring. To improve support for carers we need to raise their profile not only within research and health and social care provision, but also amongst the public and carers themselves.

These are all positive indications that carers are being put on the agenda. This is good news for those of us who are already carers, and the majority of us who will become carers or need help from a family carer towards the end of life.

All about family carers: the Special Issue of  Palliative Medicine

All about family carers: the Special Issue of Palliative Medicine

To find out more…
A longer article to which this post relates, ‘Towards better support for family carers: A richer understanding’, together with other articles on family carers, appears in the Special Issue of Palliative Medicine July 2013 27 (7): 579-580. EAPC members and registered users of the EAPC website can download free copies of these papers. (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.

Coming up…
During the next few days we shall be publishing two more posts about family carersProfessor David Currow on a recent study on caregivers at the end of life and  Nathan Davies on family carers of people with dementia.

More about the authors…
Gunn Grande is Professor of Palliative Care, School of Nursing, Midwifery & Social Work, University of Manchester; Professor Sheila Payne is Director of the International Observatory on End of Life Care and President of the European Association for Palliative Care.

This entry was posted in EAPC Board Members, EAPC Congresses, Palliative Medicine: Editor's Choice and tagged . Bookmark the permalink.

2 Responses to Putting family carers on the agenda in palliative care

  1. Pingback: Putting family carers on the agenda in palliative care | EAPC Blog | All Things Palliative - Article Feed

  2. Dear Professor Sheila Payne and Professor Gunn Grande,
    I am analysing deeply Your Precious Article, “A richer understanding” which discloses the great value of family carers. Family carers are Everyone Who Wants to Love-in-Caring, and the Patient needs to be Loved-and-Cared. Every patient perceives in his own measures the beauty of a word, of a sign, of a gesture, of a silence, because the Family carers want to understand deeply and deeply what the patient perceives, when he perceives. And within these atmospheres and perceptions the patient not only receives, perceives, but also he b r e a t h e s the Family Carer’s Presence.
    My field of research is the PreverbalPediatricPalliativeCare, and when a PreverbalOncologicChild lives, during his last month of his life, delirium, Who can collect His hallucinations, his unusual movements, signs, gestures, those behaviours which are the translations of his feelings, such as fear, anguish, isolation, stress, distress and pain? If at the bedside of the preverbalChild the CareGiver can give all his There-Being fully and deeply, his There-Being becomes space and time for the Child Who-Can-Breathe new emotions, sensations and perceptions. Luisella Magnani
    http://www.luisellamagnani.it

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