Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design.
Policy makers internationally have also advocated for enhanced family carer support.
However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement.
Furthermore, many family carers find it difficult to access healthprofessional support based on their needs and others are not even aware that such services exist.
Family carers also provide the bulk of care and support to patients receiving care at home; yet approximately 40% of carers may experience psychological distress which is typically under-recognised. Thus, despite consistent calls for the integration of a family approach to palliative care, effective systematically applied psychosocial support for family carers is still underdeveloped.
Given this background members of the management committee of the European Association for Palliative Care’s (EAPC) Reference group on family carer research (https://www.eapcnet.eu/eapc-groups/reference/family-carers/) comprising international senior research academics in family caregiving set out to develop strategies to improve the design and conduct of research with family carers.
We used an expert elicitation study design which adapted a version of the ‘Identify, Discuss, Estimate and Aggregate’ elicitation protocol, supplemented with strategies sourced from peer-reviewed literature complemented by some patient and public input.
A compilation of recommended strategies and a checklist endorsed by the Board of the EAPC was then created to: (a) help researchers plan research involving family carers by providing guidance on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals.
In order for the strategies to be enacted, academic and clinical leaders will need to work strategically and collaboratively with policy makers, funding bodies and crucially with family carers themselves.
We hope that by doing so, the recommendations arising may enhance methodologically rigorous research. If so, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.
For more information, please refer to the full article in Palliative Medicine
https://doi.org/10.1177/02692163221136162
Author : Professor Peter Hudson Director Centre for Palliative Care, Melbourne (Australia)
http://www.centreforpallcare.org/
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