Giving Voice to Informal Post-Caregivers

This is a qualitative, inductive study, based on focus group narratives (Krueger & Casey, 2000), and aims to design a network of support for informal post-caregivers, identifying the important points of contact through the perceptions of palliative care team and home support team members, general practitioners, informal caregivers and informal post-caregivers, as well as members of civil society. It has been based on a Narrative Medicine approach (Charon, 2001), Bioethics and Thematic Analysis (Braun & Clarke, 2006), articulating narrative terms and concepts with the ethical dimension of the lived experience.Three focus groups were held with 15 participants, including 2 representatives of institutional organizations, 1 nurse researcher, 1 general practitioner, 2 internal medicine doctors with palliative care skills, 2 psychologists, 4 representatives of caregiver associations, 1 caregiver and 2 informal post-caregivers. Their ages range from 35 to 70.
By involving participants who have their own individual voice in the community and others who stand for the interests of a group, our study has paved the way for a bottom up and a top down approach. In the long term, the research team intends to integrate the network into already existing infrastructures that need to be revitalized (such as https://hoope.pt/) or that are flourishing now (such as https://www.deforafora.com/).
The analysis of the qualitative data highlighted the concept of Community4Care, the living forces of the community, as an overarching theme that should guide the construction of a support network for informal post-caregivers. In addition, three closely related sub-themes emerged: (1) Compassion Axis, (2) Coordinated Action Axis, (3) Care Literacy Axis.
Focusing the response on the community allows for greater empowerment for care, valuing those involved, and at the same time taking off the burden from the institutional system, which can then assume responsibility for regulating | supporting community initiatives, such as Community4Care.