The family caregiver experience in palliative care pathways: a multidimensional framework

Family caregivers play an essential role across the life course of people, especially in delicate moments as the end-of-life, playing a central role in supporting and caring for terminal patients. Exploring the experience of family caregivers along this pathway is crucial to ensure a respectful, person-centered and high-quality experience with healthcare services, not only for patients but also for their caregivers. This study aimed to develop and validate collaboratively a multidimensional framework to explore the global experience of family caregivers across the palliative care pathways, through a multi-step participatory process involving professionals and caregivers.

The study employed a mixed-methods design. A literature exploration was conducted to identify key dimensions of the caregiver experience along the palliative care pathway, which informed the development of a preliminary framework subsequently examined through a Delphi-derived consensus process. A purposive sample of Italian professionals and caregivers participated in the Delphi study and were asked to assess the perceived importance of each dimension of the preliminary framework. Data analysis further examined areas of convergence and divergence between the two groups. The Delphi process resulted in the development of a final framework. Both the preliminary and final frameworks were refined through a workshop involving a group of Italian palliative care experts.

As a result of the first phase, our multi-dimensional framework included six key dimensions (namely, 'Needs', 'Responses', 'Clarity and adequacy of information', 'Availability in case of need', 'Responses in the Home Context', 'Communication and involvement'), each with additional sub-dimensions. The Delphi study involved 37 participants, including 19 professionals and 18 caregivers. All dimensions consistently received high ratings already in the first round. Emotional needs, clarity of information, and communication were prioritized by all participants, with differences including caregivers' higher ratings for training and involvement, and professionals' emphasis on communication adequacy. Open-ended comments identified personal, professional, and organizational challenges, such as the emotional burden on caregivers, communication gaps, and a need for enhanced support services. In a follow-up workshop, practitioners discussed the results of the Delphi, proposing to adopt the framework for involving caregivers in a holistic evaluation of services, and in defining person-centered improvements.

This study provides a multidimensional framework of the family caregiver experience, developed and refined collaboratively by both professionals and caregivers. The framework represents a conceptual and operational structure that may inform caregiver experience assessment and service evaluation. Given its flexible design, the framework may be further examined and adapted in other healthcare systems. These findings provide actionable insights to refine palliative care practices and better align them with the lived experiences and priorities of caregivers and professionals.