Burden of mothers of children diagnosed with autism spectrum disorder: mixed method study

Sobrecarga de madres con hijos diagnosticados con trastorno del espectro autista: estudio del método mixto

ABSTRACT

Objective:

To analyze the maternal burden related to the care of children diagnosed with autism spectrum disorder.

Method:

Study with a mixed-method sequential explanatory design held at the Association of Friends and Families of Special Children and in a WhatsApp® Messenger group, with 51 (quantitative phase) and six (qualitative phase) mothers, between January and October 2019. For data collection, in the quantitative phase, a sociodemographic, economic and child care characterization form and a Zarit Burden Interview instrument were used. Semi-structured interview was used in the qualitative phase. Descriptive bivariate and multivariate analysis (quantitative) and Bardin analysis (qualitative) were performed.

Results:

A total of 64.7% mothers felt burdened, with mild to moderate burden (52.9%). Four analytical categories on elements that trigger maternal burden emerged.

Conclusions:

There is an urgent need to identify maternal burden related to the care of children with autism spectrum disorder, during assistance in Primary Health Care.

Keywords:
Autistic disorder; Mother-child relations; Caregivers