CUSAM. Women carers of people with severe mental disorders: challenges for a democratic and collective care

PROJECT

The CUSAM project is based on the need to explore in greater depth the impact of the exercise of care on women in the position of caregivers of adults diagnosed with severe mental disorders (SMD), in the areas of daily, social, economic, relational, and symbolic life, health, the exercise of citizenship and social participation, as a precondition for democratising care relationships.

CUSAM was born as a result of the study “Collaborative Medication Management (CGM)” carried out between 2017-2020 in Catalonia (RecerCaixa LCF/PR/RC16/10100012, PIs: Ángel Martínez Hernáez, URV and Asunción Pié Balaguer, UOC), with people diagnosed with SMD, family caregivers and mental health professionals. This research revealed that the gender mandate and the patriarchal and institutional culture reproduces the dual conception of care, causing various effects on the physical, mental, and emotional health of caregivers, as well as isolation, loneliness, undervaluation of care, stigma, lack of access to health and social system resources, among others. This dual and highly feminised care matrix generates adverse effects for both parties, the person, often a woman and family member, in the position of caregiver, and the person being cared for, in this case diagnosed with TMG and thus subjected to processes of medicalisation, stigma, discrimination and loss of citizenship rights.

CUSAM has two main blocks of objectives:

1) To explore and analyse in depth the conditions in which care is exercised, in the case of women in the position of carers of adults diagnosed with SMD, who maintain various family ties with the person being cared for, and with mental health professionals, through ethnographic, qualitative, and participatory fieldwork. CUSAM also incorporates professionals from the social services system, who can have an enormous relevance in the construction of measures and public policies for the creation of networked care, as well as attending to the social needs presented by women carers and people in the position of cared-for.

2) Transfer the knowledge generated and impact on public policies. CUSAM seeks to implement inclusive and sustainable public policies in the field of mental health, social services and care that promote social participation, autonomy, and the full exercise of citizenship, both for adults diagnosed with MSM and for women as caregivers. Among others, through the design and implementation of a “Guide for collective and democratic care” that allows for the testing of solutions, strategies, and ways of caring in a network that can be evaluated or tested throughout the process and afterwards.

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