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"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study
Gülay Ateş1, Anne Frederieke Ebenau2, Csilla Busa3
1Department of Palliative Medicine, University Hospital Bonn, Sigmund-Freud-Straße 25, 53127, Bonn, Germany. Guelay.Ates@ukbonn.de.
BMC Palliative Care
|March 2, 2018
Summary
Integrated palliative care initiatives (IPC-i) often fail to adequately support family carers, despite their crucial role. Enhancing proactive care and recognizing carers as partners is essential for improving their well-being and access to resources.
Area of Science:
- Palliative Care
- Family Caregiving
- Integrated Care
Background:
- Family carers play a vital role in palliative care, managing numerous responsibilities and facing significant life impacts.
- Carers are integral to both formal and informal care networks but also require substantial support themselves.
- Existing literature highlights the dual role of family carers as caregivers and individuals in need of support.
Purpose of the Study:
- To investigate the burdens and rewards experienced by family carers in palliative care settings.
- To identify helpful aspects of interactions between family carers and professionals in integrated palliative care initiatives (IPC-i).
- To explore the support needs of family carers across different European countries.
Main Methods:
- Purposeful recruitment of family carers for patients with cancer, COPD, or heart failure across 22 IPC-i in five European countries.
- Data collection through 156 semi-structured interviews and 87 quantitative questionnaires (CRA, POS, CANHELP Lite).
- Qualitative data analyzed using thematic coding (MAXQDA/NVivo), and quantitative data analyzed using statistical tests (SPSS).
Main Results:
- Quantitative data indicated moderate burden, while qualitative findings suggested this burden may be underestimated.
- IPC-i with strong professional networks and communication systems showed potential to alleviate carer burden through interventions like nursing or psychological support.
- Family carer needs were consistent across countries, yet IPC-i predominantly offered one-off events, lacking systematic support structures.
Conclusions:
- Most IPC-i inadequately address family carers' needs, failing to provide proactive care and access to essential resources like training or respite.
- There is a critical need to recognize family carers as a fundamental part of the 'unit of care' and as active partners in the caregiving process.
- Improving carers' knowledge, access to, and utilization of available support services is recommended.