Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings.

BACKGROUND: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy. METHODS: This is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. RESULTS: As the hours dedicated to elder care increases, both objective and developmental caregiver's burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens' management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers' pivotal role. CONCLUSIONS: A dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process.

Place4Carers: a mixed-method study protocol for engaging family caregivers in meaningful actions for successful ageing in place.

INTRODUCTION: Engaging family caregivers could be a critical asset to make the 'ageing-in-place' imperative a reality. This is particularly evident in rural and remote areas, where caregivers can fill the gaps that exist due to the fragmentation of the welfare system. However, there is little knowledge about the expectations that family caregivers have from healthcare services in rural and remote areas.Place4Carers (P4C) project aims to co-produce an innovative organisational model of social and healthcare services for family caregivers of older citizens living in Vallecamonica (Italy). The project is expected to facilitate ageing-in-place for older citizens, thus helping caregivers in their daily care activities. METHODS AND ANALYSIS: P4C is a community-based participatory research project featuring five work packages (WPs). WP1 consists of a survey of unmet needs of caregivers and older people receiving services in Vallecamonica. WP2 consists of a scoping literature review to map services that provide interventions of support to caregivers living in remote areas and promote engagement. WP3 organises co-creation workshops with caregivers to co-design, co-manage, and co-assess ideas and proposals for shaping caregiver-oriented services and organisational models. WP3 enriches the results of WP1 (survey) and WP2 (scoping literature review), and aims to co-create new ideas for intervention support with and for caregivers in relation to the objectives, features and characteristics of a new service able to address the caregivers' needs and expectations. WP4 tests the service ideas co-created in WP3 through piloting an intervention based on ideas co-created with caregivers. Finally, WP5 assesses the transferability of the intervention to other similar contexts. ETHICS AND DISSEMINATION: The study has been approved by the Ethics Committees of the Department of Psychology of Università Cattolica del Sacro Cuore and Politecnico of Milan. Results will be disseminated through peer-reviewed journals, scientific meetings and meetings with the general population.