CAREGIVERS’ EXPERIENCE IN MEETING SELF-CARE NEEDS OF ADOLESCENTS WITH AUTISM SPECTRUM DISORDER: A QUALITATIVE STUDY

Lilis Lestari, Elisabeth Siti Herini, Indria Laksmi Gamayanti


DOI: https://doi.org/10.33546/bnj.123

Abstract


Background: Autism spectrum disorder is a complex developmental disorder, which increased rapidly than other developmental disorders in the world. This complex disorder affects a child’s self-autonomy, which has become a challenge for their parents or caregivers.

Objective: This study is to explore main caregivers’ experience to meet self-care needs of adolescents with autism spectrum disorder in Pontianak, West Borneo, Indonesia.

Methods: This study employed a qualitative design with semi-structured in-depth interviews. Seven main caregivers who are living together and taking care of the adolescents with autism spectrum were selected using a purposive sampling. Triangulation was conducted to ensure the trustworthiness of this study, including interviews, observations of self-care activities, documents such as photos, learning reports, and field notes. Participants’ statements were recorded using a voice recorder, and then transcribed, coded, interpreted, and categorized to form main themes and sub-themes.

Results: The study identified three main themes: 1) autonomy in self-care, 2) care effort, 3) feelings, supports, and expectations. These findings emphasize the potentials of the children with autism to be autonomous in their daily self-care.

Conclusions: Adolescents with autism spectrum disorder can potentially meet the needs of their daily care independently.

 

This article has been corrected with a separate erratum: 

https://doi.org/10.33546/bnj.1146


Keywords


caregiver experience; main caregiver; adolescent; autism spectrum disorder; self-care; basic needs

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