Quality of Life in Caregivers of Children with Autism Spectrum Disorder for Nursing Care

Abstract

Introduction: Children with autism spectrum disorder may have a lifelong disability. Parents play the most important role from diagnosis and throughout the child's life to ensure adequate evolution.

Objective: To characterize the current status of quality of life in primary caregivers of children with autism spectrum disorder for nursing care.

Methods: A mixed-method, sequential explanatory, descriptive (quantitative) and phenomenological (qualitative) study was conducted between April 2019 and January 2022, at Policlínico Chiqui Gómez Lubián, in Santa Clara, Cuba. The study population consisted of 17 primary caregivers of children with the disorder, selected by homogeneous sampling. The quantitative data were obtained through a self-administered scale and qualitative data through an in-depth interview. For processing the quantitative data, frequencies and percentages were calculated, as well as McDonald and Cronbach alpha were used for the analysis of internal consistency and reliability. For the qualitative data, content analysis was used, which allowed the joint analysis of data.

Results: 94.10 % of the primary caregivers are mothers. The most affected dimensions observed at low level are rest and sleep, with a figure of 0.41; as well as emotions and behaviors and physical symptoms, with a figure of 0.42.

Conclusions: The quality of life and satisfaction of primary caregivers of children with autism spectrum disorder was compromised, as it was characterized by affectations in global quality of life and by dimensions for nursing care.