Self-Care and Quality of Life of Mothers or Informal Caregivers of Children and Adolescents with Cerebral Palsy

Abstract

This study aimed to investigate the relationship between mothers or informal caregivers of children and adolescents with Cerebral Palsy and their self-care practices, seeking to understand how caregiving routines influence their physical, emotional, and social health. This is a cross-sectional field study with a descriptive approach, conducted with 21 caregivers of children and adolescents with Cerebral Palsy treated at a medical outpatient clinic linked to the Brazilian Unified Health System (SUS) in the city of Marília, São Paulo. Data collection was carried out using a structured questionnaire consisting of 33 questions organized into four categories: sociodemographic, physical, social, and emotional aspects. The results indicated that most participants dedicate themselves to caregiving on a full-time basis and do not engage in paid work. A high frequency of physical pain, sleep deprivation, and feelings of fatigue or discouragement was observed. In the social and emotional domains, most caregivers reported not having regular moments of rest and not attending psychotherapy, although many expressed interest in receiving psychological support. The findings highlight the burden experienced by these women and the difficulty of incorporating self-care practices into their daily routines. It is concluded that expanding health care attention to informal caregivers is essential, recognizing them as a fundamental part of the care process and promoting support strategies that contribute to their physical and emotional well-being.