Dimensions of quality of life most frequently affected in primary caregivers of patients with autism spectrum disorder

Abstract

Introduction: children with autism spectrum disorder may have a serious disability for life; parents play the most important role from the moment of diagnosis and throughout the child's life to ensure his/her adequate evolution and incorporation into society. Objective: to identify the dimensions of quality of life most frequently affected in primary caretakers of patients with autism spectrum disorder in the Municipality of Santa Clara. Methods: a descriptive, longitudinal, prospective study with mixed methods was conducted. The population consisted of 19 primary caregivers of patients with this disorder, from which a sample of nine caregivers was selected by simple random sampling. Structure, process and outcome data were evaluated and processed frequently and in percentages. Results: changes in emotions and behaviors since caregiving were reported by eight caregivers (88.8%), 100% considered their rest and sleep affected, and 88.8% reported physical symptoms and affects on their self-care. The highest number of primary caregivers of autistic patients are mothers (7, 77.7%), followed by grandmothers (22.2%). Conclusions: physical appearance, physical and emotional symptoms, interference with rest/sleep, life and social projects, and satisfaction with preparation received and overall quality of life were identified as the dimensions of quality of life most frequently affected in primary caregivers of patients with autism spectrum disorder.

Keywords

• autismo
• trastorno del espectro autista (tea)
• cuidadores
• calidad de vida