Initial steps toward the first Compassionate Community in Italy: A study protocol.

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.