Background: Healthcare systems have become increasingly institutionalized, distancing death from everyday life and limiting community capacity to support dying and bereavement. Compassionate Communities (CCs) aim to address this gap through a public health approach to palliative care. Evidence on their development and evaluation remains limited, particularly in Southern Europe.
Objectives: To describe the co-creation process of the first Italian CC and outline an evaluation framework to guide implementation and sustainability.
Design: Participatory, mixed-methods protocol covering the first two phases of the InVita! project: (I) Discover and assess and (II) Focus and commit.
Methods and analysis: Phase I will map local needs and resources through semi-structured interviews with interest-holders, focus groups with caregivers, and reflexive field diaries. A descriptive survey of adult residents will assess knowledge of palliative care, attitudes toward death, perceived self-efficacy, and community engagement. The survey adapts an existing instrument and incorporates death literacy dimensions, with cultural adaptation through interest-holder review. Phase II will translate findings into a shared mission and prioritized actions via participatory workshops and a community awareness event. Data will be analyzed using reflexive thematic analysis for qualitative data and descriptive statistics for survey data. Integration will follow GRAMMS guidelines.
Ethics: The study was reviewed by the Comitato Etico Area Vasta Emilia-Nord, which determined that formal approval was not required due to its noninterventional nature. All participants will provide informed consent, and data will be anonymized in compliance with GDPR.
Discussion: This protocol introduces a structured, participatory approach to developing Italy's first CC. By integrating qualitative and quantitative methods and embedding public involvement, the study aims to generate actionable insights for scaling CC initiatives and advancing public health palliative care.
Trial registration: Not applicable.
Keywords: Compassionate Cities; Compassionate Communities; co-creation; end of life; multiple-method participatory design; palliative care; public health; study protocol.
A project on the realisation of the first Compassionate Community in Italy; the first steps to understand the needs and resources with respect to end-of-life care in a city in the north of Italy Serious illness, dying, and grief affect everyone, yet these experiences are often hidden from everyday life. This can leave families feeling isolated and unsupported. Compassionate Communities is an approach that brings care back into the community, encouraging people, organizations, and services to collaborate in supporting those at the end of life. This project, called InVita!, is the first attempt to create a Compassionate Community in Italy. We will collaborate with local residents, volunteers, and health and social care professionals to identify existing support and gaps in services. We will use interviews, group discussions, and a community survey to gather information about individuals’ knowledge, attitudes, and confidence in helping others at the end of life. The results will guide practical actions, such as awareness campaigns and support networks, to make care more inclusive and sustainable for everyone in the community.
© The Author(s) 2025.