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EAPC Task Force on Family Carers - CONCLUDED

This Taskforce was established in October 2008 and concluded in October 2011.

Summary

The EAPC Task Force on Family Carers was established in October 2008 with the purpose of promoting the development of support for family carers and to increase the recognition of their role in providing care to patients with advanced disease. To achieve these aims, the Task Force have prepared a ‘white paper’ to provide an overview of issues for carers. This was approved by the EAPC Board in March 2010 and is published in two parts in the European Journal of Palliatuve Care in 2010. The Task Force works in close collaboration with the International Palliative Care Family Carers Research Collaboration (IPCFRC).

Aims & objectives

1. ‘White paper’ (completed 2010 to be published in European Journal of Palliative Care)
2. Literature review of assessment tools for family carers (completed by IPCFRC in 2010 to be published in Palliative Medicine)
3. Comparative overview of national policies in support of family carers for terminally ill patients in selected countries
4. Preparation of an international survey of family carer support services provided in selected European countries

Background

Since its inception the modern hospice and palliative care movement has recognised the important role that family carers play in providing care and support to patients. As a consequence, health and social care professionals are obliged to support the family alongside the person diagnosed with a life threatening illness. There is increasing evidence that family and other informal carers face many demands and experience considerable physical, psychological, social and financial challenges. Despite this, there has been limited research on how best to support family carers, limited research funding and only a small group of researchers actively exploring this area.

Milestones

Objectives

Outcomes

Timescale (from time of EAPC endorsement of task force)

1. Evidenced based description of family carers’ needs in palliative care and strategies for staff and managers in hospices and palliative care organizations regarding optimal ways to work in partnership with family carers for the benefit of both patients and family carers. 

‘White paper’ EAPC document and
Publication submitted to peer reviewed journal

2010

2. Literature review of assessment tools for family carers

Publication submitted to peer reviewed journal

2010

3. Comparative overview of national policies in support of family carers for terminally ill patients in selected countries

EAPC Report and
Publication submitted to peer reviewed journal

To be started 2010

4.Preparation of an international survey of family carer support services provided in selected European countries
(dependant upon successful funding)

Report and
Publication submitted to peer reviewed journal

To be started 2011

Results, outcomes

1. ‘White paper’ (completed 2010,  published in European Journal of Palliative Care avialable in page: Taskforce publications)

2. Literature review of assessment tools for family carers (completed by IPCFRC in 2010  published in Palliative Medicine)

3. Comparative overview of national policies in support of family carers for terminally ill patients in selected countries (was discussed at a meeting on 10th June, at the EAPC Research Congress, Glasgow)

4. Preparation of an international survey of family carer support services provided in selected European countries (was discussed at a meeting on 10th June, at the EAPC Research Congress, Glasgow)

Partners and acknowledgments

We thank the St Christopher’s Hospice, London, UK  and the UK Cancer Experiences Collaborative for supporing the taskforce and IPCFRC with a small grant.

 

Chairs


Sheila Payne (UK)


Peter Hudson (Australia)

Members

Steering committee

Gunn Grande (UK)
David Oliviere (UK)
Carol Tishelman (Sweden)
Sabine Pleschberger (Austria)
Pam Firth (UK)
Gail Ewing (UK)


Members
A virtual group of members have been established they include:

David Oliviere, UK
Carina Persson, Sweden
Carol Tishelman, Sweden
Tove Byluud Grenklo, Sweden 
Carl Johan Fürst, Sweden
Gail Ewing, UK
Gunn Grande, UK
Sabine Pleschberger, Austria
Ruth Lagman, USA
Irene Murphy, Ireland
Pam Firth UK
Iris Cohen Fineberg, UK

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