“Quem vai cuidar?": representações sociais e experiências de mães idosas com filhos adultos com deficiência

Abstract

Being a mother of a child with a disability involves a daily life filled with processes and uncertainties that encompass practical, emotional, financial, and care aspects. However, few studies have been conducted with mothers of adult children who experience the aging process. Therefore, this study aimed to analyze the experiences and social representations of motherhood constructed by elderly mothers who care for adult children with disabilities. The study involved 13 mothers whose children were associated with a non-profit charitable organization in a city in Paraíba. Semi-structured individual interviews were conducted, covering topics related to the child’s clinical condition, family dynamics, daily maternal practices, motherhood in the context of aging, and support networks. Data analysis was supported by Bardin's Thematic Content Analysis approach, which allowed the construction of five categories: 1) Receiving the diagnosis; 2) Changes in the family system; 3) Being a mother of an adult child with a disability; 4) Support; 5) Aging and motherhood. In social representations regarding motherhood, elements such as care, responsibility, sacrifice and blessing stood out. Regarding the child with a disability, the identified representations were related to minimizing the disability, unpredictable behavior, divine and special characteristics, the need for greater attention, love and support, distinct treatment, and gradual and non-linear development. The experience of being an atypical mother of an adult child was associated with experiences of prejudice, frequent illnesses, financial limitations, demands related to basic care, and the challenge of dealing with the child's sexuality and romantic relationships. Social representations of people with disabilities and motherhood are related to how mothers experience atypical motherhood during the aging process, as well as guide and justify even more intense caregiving practices. It is hoped that this study will help in planning and implementing more effective interventions for this group, as well as contribute to the creation and/or strengthening of public health policies benefiting them.