Experiences of informal care for mothers with schizophrenia and related disorders: listening to the voice of mothers and their primary supporters

ABSTRACT - Psychiatric reforms promoted the integration of the severely mentally ill in the community and increased their possibilities to determine their own life paths, have partners and start their own families. However poor parenting outcomes have been described among some of these parents, as well as poor cognitive, developmental, health and social outcomes in some of their children. Objectives and methodology: This research studied the experiences and needs of support in parenting of women with schizophrenia and related disorders, from the perspective of mothers and their caregivers in two contexts with different organization of mental health care. Fifty interviews were performed in the regions of Granada (Spain) and Mendoza (Argentina), and were analyzed through qualitative content analysis. Results and discussion: Mothers and caregivers were characterized according to socio-demographic and clinical characteristics. Positive aspects and strengths in parenting were identified by almost all participants, as well as difficulties in several areas of childcare. These included having negative feelings about motherhood, having difficulties in dealing with the overload of tasks, having difficulties in maintaining discipline of children and in interacting with them, and lacking adequate material conditions for childcare. Participants talked about several aspects of illness that affected parenting, but also mentioned other personal and contextual aspects that could hinder or be supportive in this respect. Support from their close social network was considered as fundamental for parenting. Dynamic of support was described in terms of who was providing support in daily lives, which activities of support were performed, how support was requested or provided so to be acceptable, and how given and received support was being valued. Several problems were identified in this dynamic, especially in the interaction between mothers and caregivers, and in mothers feeling displaced or hindered by the support they received. As well, most caregivers talked about the burden of care they experienced. Participants also described the support they received in parenting from mental health care and other institutions. Finally, participants identified uncovered needs of support, and needs of improving aspects of the support they were receiving. Coincidences and differences in the accounts of mothers and caregivers were highlighted, and mainly observed in the difficulties they described in parenting, the importance they gave to received care, and the unmet needs of support they expressed. Main differences among countries were related to their different organization of mental health care, accessibility of services and availability of support in parenting, support for other social needs and support for caregivers. As well, principles of community mental health care seemed to influence some experiences and understandings of illness and caring roles participants expressed. Conclusions and recommendations: Implications for mental health care policies and programs include the need of acknowledging the role as parents of their users and adapt the organization of care to their needs, providing support in parenting and especially preparing and supporting the role of informal carers in these aspects. It seems fundamental that mothers be active participants of their care, do not result displaced in their role, and support be provided in an acceptable way so to be effective. Caregivers need more support in their role, and burden needs to be prevented. Needs of higher care during psychotic breakdowns can be anticipated and care organized in advance