Manejo familiar e impacto subjetivo da patologia em cuidadores de crianças com doença falciforme

Abstract

Sickle cell disease is a hereditary hemoglobinopathy, and its severe complications pose daily challenges that demand emotional, financial, and social adaptations from patients and caregivers, significantly impacting the overall quality of family life. The aim of this research was to analyze factors related to family management in children aged 3 to 12 years with sickle cell disease in the south-central region of the state of Tocantins, Brazil. This was a quantitative, analytical-descriptive, and cross-sectional study with a sample of 96 caregiver-child dyads, between the months of September 2023 to April 2024. Data collection instruments included a Sociocultural and Health Conditions Questionnaire, a Clinical Data Form from medical records, the Wong-Baker Faces Pain Rating Scale, the Family Management Measure (FaMM), and the Caregiver Burden Scale. Statistical analysis was performed using SPSS software. Frequency calculations, measures of central tendency, and variability were conducted. Normality was tested using the Kolmogorov-Smirnov test. Statistical analysis also included normality tests and Spearman's correlation. A significance level of 5% was considered. Among the 91 participants, 90.11% of the caregivers were mothers, predominantly aged between 30 and 45 years. Additionally, 80.22% self-identified as mixed-race, 60.44% had completed high school, and 67.63% reported religious beliefs and attendance at a religious institution. Among the children with sickle cell disease, 75.82% were between 7 and 12 years old, and 90.11% had experienced painful crises in the past 24 months. The analysis results indicated that, as children age, caregivers’ perceptions of their independence tend to decrease, especially during frequent pain crises, which negatively impact management abilities. Conversely, improvements in children’s autonomy contribute to caregivers’ emotional well-being by reducing stress and tension and preserving social relationships. Confident caregivers demonstrate a greater ability to handle external stressors, which alleviates emotional burdens and enhances care management. However, more intense demands, such as frequent transfusions, lead to social withdrawal and reduced emotional availability for bonding with the child. The interference of the disease in family routines increases emotional strain and caregiver vulnerability. A lack of social and financial support exacerbates family difficulties, heightening the subjective impact on caregivers’ health and complicating care organization. Despite these challenges, in some cases, social isolation fosters greater cooperation between parents, strengthening family bonds and improving management. Therefore, strategies promoting children’s autonomy, caregiver confidence, and social support are essential to enhancing families’ quality of life. In conclusion, caregivers of children with sickle cell disease experience significant psychosocial impacts due to the intense care demands associated with the child’s condition and the clinical complications of the disease. This study suggests that strengthening support networks and public policies is crucial to improving the quality of life for these families.