PalliPA: How can general practices support caregivers of patients at their end of life in a home-care setting? A study protocol.

Background: The care of patients with a life-threatening, progressive and far advanced illness in a home-care setting requires appropriate individual care and requires the active support of family caregivers. General practice teams are usually the primary care givers and first contact and are best placed to offer support to family caregivers and to recognise and respond to the burden of care giving on family members. The aim of this project is to develop a best practice model for engaging with and supporting family caregivers.
Findings: The project is framed as an exploratory trial for a subsequent implementation study, covering phases 0, I and II of the MRC (Medical Research Council) framework for development, design and evaluation of complex interventions. The project is a multi-method procedure and has two phases. In the first phase, which has already been completed, we used a reflective practice procedure where general practice teams were asked about how they currently deal with family caregivers. In the second phase, a participatory action research approach aims to improve identification and response to when support is necessary for family caregivers. Ten participating general practice teams each enrol 40 eligible patients and their family caregiver, to identify structures and tools feasible for use in their practice. Standardised self-reported questionnaires (Burden Scale for Family Caregivers and Quality of Life Questionnaire Core 15 Palliative) are being applied at study inclusion (prior to or during the implementation period) and after 6 and 12 months to explore implementation effects. Qualitative assessment of general practice teams' experiences will be triangulated with the quantitative evaluation of the implementation.
Discussion: This two-step approach, which is appropriate to primary palliative care in the German health care context, will enable general practice teams to develop feasible, acceptable and successful strategies for the implementation of best practice to successfully support family caregivers of patients at the end of life.