| Summary: | ABSTRACT - Background: There has been a global call for the modernization of models of mental health service provision reinforcing that care should be mostly provided at the community level. A consequence of this shift refers to its implication to family members of community-dwelling persons with mental disorders that are becoming increasingly involved in caregiving. Although care research is frequently employed to assess the quality-of-service provision, the lived experiences of caregivers are rarely interpreted within a socio-cultural framework. This mismatch can make it difficult to understand specific aspects that must be addressed by services and practitioners to strengthen mental health systems. Aims: The main goal of this thesis was to explore the main challenges faced by psychosocial services to support family caregivers of persons with severe mental illnesses and to understand how do family members experience caregiving for their relatives at the community level. Methods: An overarching qualitative framework was upheld, although different methodological approaches were used. Firstly, a scoping review was performed integrating care research in the social sciences and mental health fields. Secondly, a historical contextualization of the Portuguese case was undertaken. Finally, three empirical studies employed semi-structured interviews with managers of psychosocial services, a cross-sectional survey with family caregivers and participant observations in peer-support groups of family members. Results: Historical contextualization suggests a periodization beginning in the New State when the first national mental health law was established and concluding in 2016 with the latest mental health plan that has aimed at scaling-up communitarian services. Empirical findings show that, at the end of this process, asymmetries in the provision of psychosocial rehabilitation is still a prominent issue within the Lisbon Metropolitan Area and that concerns with the sustainability of long-term care is still a pressing issue, either from the perspective of service managers and family caregivers. Three circumstances emerged in the participant observation and can contribute to better understand the lived experiences of family members. These refer to the moral responsibility of caregiving, challenges for meeting needs for care and worries related to an uncertain future. Conclusions: The ensemble of these findings points to three main implications for clinical practice and public policy development. First, policymakers should develop services and support family members to promote future care planning. Second, practitioners must support family members to cope with caring responsibilities and to overcome the contingencies of caregiving in the community. Finally, there must be a concerted action from policymakers, services, and practitioners to fight persistent and structural inequalities.
|
|---|