Improving support for family caregivers in palliative care through journey mapping: a qualitative study across 19 healthcare organizations

Background / aim: Family caregivers play a crucial role in supporting and caring for patients with life-threatening diseases. Providing this care can be rewarding but can also pose a great burden on family caregivers. Therefore, support is needed to address their problems and needs. However, systematic support for family caregivers is often lacking within healthcare organizations. To bridge this gap, a Family Caregiver Journey Workshop was developed as an implementation tool to help healthcare organizations enhance structural support for family caregivers. The aim of this study was to investigate the output of this workshop and to evaluate its process . Methods: The workshop was conducted in 19 healthcare organizations (7 home care organizations, 6 hospices, 3 nursing homes, 2 hospitals, 1 transmural organization). Each organization assembled a group of healthcare professionals to conduct the workshop and develop an action plan based on its outcomes. Subsequently, a focus group with participants from different organizations was held to evaluate their experiences with the workshop. The action plans and the focus group transcript were analyzed using conventional content analysis. Results: The action plans described various goals, activities, timelines and responsibilities. Goals focused on (1) direct support for family caregivers and (2) preconditions on the team and organizational level. Planned activities for family caregivers included systemically addressing their needs and wellbeing, improving information provision, supporting their involvement in patient care, strengthening patient-caregiver relationships, and offering bereavement support. Activities at the team or organizational level included developing protocols, guidelines and tools, providing training and education, fostering interprofessional collaboration, and supporting healthcare professionals. Healthcare professionals across all healthcare settings considered the workshop a useful tool to reflect on current practices and identify concrete improvements in supporting family caregivers. Conclusion: The Family Caregiver Journey Workshop is a valuable implementation tool for healthcare professionals to reflect on their current practice of supporting family caregivers and to set targeted improvement goals. Trial registration: Open Science Framework (OSF), preregistration 2022: Supporting family caregivers during the illness and after the death of their loved one, with special attention for individual needs, health skills and culturally sensitive communication . https://osf.io/57wm9/overview