"The caregiver's life is the uncared-for life": experiences of mothers of children with cerebral palsy in mental health care in Brazil.

Abstract

Objective: To understand the experiences of mothers of children with cerebral palsy (CP) regarding the impact of caregiving on their mental health and their engagement with Brazil's psychosocial care network.

Method: This descriptive-exploratory qualitative study employed the theoretical framework of Symbolic Interactionism by Herbert Blumer. Interviews were conducted with Brazilian women aged 18 years or older, who had at least one child with CP aged between 28 days and under 19 years. Data collection focused on their experiences with mental health care and their interactions with Brazil's psychosocial care network. The interviews were transcribed and subjected to thematic content analysis.

Results: Fifteen women participated, with an average age of 36 years, predominantly with high school and higher education, who were distanced from the workforce and were married. Two central categories emerged from the interactions analyzed: "My life is not normal": Maternal life with a child with CP amidst mental health demands; and "If you need me, I'm here": The pursuit of maternal self-care, the obstacles faced, and an alternative route, with interconnected subcategories.

Conclusion: The mental health of Brazilian mothers of children with CP is marked by invisibility and multiple challenges. Their social interactions influence their psychosocial well-being, which, while acknowledged, is often neglected in favor of caregiving for their child. These challenges extend to the psychosocial care network in Brazil, characterized by barriers to accessing appropriate care for their needs. As an alternative, mothers engage in self-care activities to reconnect with their personal needs as women.