Community-for-Care: An Integrated Response to Informal Post-Caregivers

Informal caregivers play a crucial role in healthcare, but when caregiving ends the "post-caregivers" often remain invisible and unsupported. Post-caregivers face needs such as reconstructing their identity and finding space and time to grieve. This study aimed to design a support network for informal post-caregivers by exploring perceptions of diverse stakeholders.

A qualitative inductive study was conducted using three focus groups (n = 15; ages 35-70; 12 women, 3 men) held online between June and July 2023. Participants included palliative care team members, home support professionals, general practitioners, informal caregivers, post-caregivers, and members of civil society. A semi-structured guide was used, and narratives were analyzed with a Narrative Medicine-informed approach and thematic analysis.

Community-For-Care emerged as an overarching and distinctive concept that, while aligned with the ethos of Compassionate Communities, specifically addresses the transition after caregiving ends, a phase largely absent from existing models. It symbolizes the "living forces of the community" mobilized to accompany informal post-caregivers through identity reconstruction, bereavement, and reintegration. Three interrelated thematic axes structure this concept: (1) Compassion Axis-emphasizing a compassionate community that values caregiving; (2) Coordinated Action Axis-highlighting coordinated, continuous support across healthcare and community services; and (3) Care Literacy Axis-underscoring education and training for caregivers, post-caregivers, and professionals. These axes dynamically interact to empower post-caregivers and stitch the holes in the support network.

A community-centered, post-caregiver-focused framework such as Community-For-Care offers a novel extension of compassionate communities by directly addressing the loneliness, identity rupture, and invisibility that often characterize the transition after caregiving. Reinforcing compassion, coordinated action, and care literacy can enable communities to better acknowledge the contributions and ongoing needs of post-caregivers, supporting their emotional recovery, social reintegration, and reconstruction of daily life. By integrating these three axes into community practice, the model introduces a post-care-specific structure that can enhance well-being, reduce preventable health decline, and relieve pressure on formal services by mobilizing local, civic, and relational assets.