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

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...

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Main Authors: Jakelinne Reis Sousa Vilanova, Cristianne Teixeira Carneiro, Karla Nayalle de Souza Rocha, Mychelangela de Assis Brito, Ruth Cardoso Rocha, Adelianna de Castro Costa, Maria Augusta Rocha Bezerra
Format: Article
Language:English
Published: Universidade Federal do Rio Grande do Sul 2022-05-01
Series:Revista Gaúcha de Enfermagem
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Online Access:http://revodonto.bvsalud.org/scielo.php?script=sci_arttext&pid=S1983-14472022000100420&lng=en&tlng=en
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Summary: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.
ISSN:1983-1447