Family support in a palliative medicine day hospital: A participatory action survey

We would like to set up a specific support program for family caregivers of palliative patients, adjoining the palliative medicine day hospital, which could include care or coping, accompaniment and support activities, but also activities aimed at providing information or training in palliative care and accompaniment. This innovative offer needs to be justified and defined in terms of the target audience (family caregivers) and the particular period associated with the patient's palliative and outpatient care. This "ESCALE" study involves a collaborative process of reflection between bereaved family caregivers of patients previously cared for in the palliative care unit, palliative care professionals from the palliative medicine clinic at Lille University Hospital, and clinical ethics researchers, with the aim of building an innovative support system for family caregivers of palliative and outpatient patients. In so doing, it explores the hypothesis of collective learning between caregivers, researchers and palliative care workers in the field of end-of-life care. This single-center, qualitative, exploratory pilot study is based on focus groups and individual interviews with participants. It is therefore the preliminary stage in the implementation and evaluation of a support system for family caregivers of patients followed by the HDJ palliative medicine unit. It is based on a pragmatic, collective action-research approach. The main objective of the study is to set up a support system for family caregivers of patients treated in a day hospital, based on a collaborative, participatory approach involving researchers, healthcare professionals and bereaved family caregivers. The strategy is exploratory, and will use clinical ethics methodology in focus groups to study the shared problematization and collective implementation of a system that responds to it. The secondary objectives are 1. to explore the experience and individual lived experience of the participants in this collaborative approach, based on a qualitative analysis of individual interviews with the participants, and 2. to describe the effective participation of family caregivers in the construction of the device and reveal its strengths and limitations.