MAIN CAREGIVER’S EXPERIENCE IN MEETING SELF-CARE NEEDS AMONG ADOLESCENTS WITH ASD IN PONTIANAK MUNICIPALITY, WEST BORNEO, INDONESIA: A QUALITATIVE STUDY

Abstract

Background: Autism spectrum disorder (ASD) is a complex developmental disorder, increasing in number, faster than that of other developmental disorders in the world. This complex disorder affects a child’s self-autonomy, which is important for individual self-care. Objective : This study is to explore main caregivers’ experience to meet self-care needs among adolescents with ASD in Pontianak, West Borneo, Indonesia. Methods: Qualitative semi-structured in-depth interviews were done with 7 main caregivers that have lived together and taken care of the adolescents with ASD in Pontianak Municipality, West Borneo Province. Sampling was taken with purposive sampling (maximum variation). Source (interviews) and method (observations of self-care activities and documents like photos, learning reports and field notes) triangulations were taken on 1 participant and 7 autistic adolescents. Participants’ statements were recorded by using a voice recorder, and then transcribed, coded, interpreted, and categorized in order that sub-topics and main topics could be formed. Results: The study identified five main topics: i.e., 1) Autonomy in self-care; 2) Care effort; 3) Feelings, support, and expectations. Three findings of the study emphasize the potentials of children with autism to be autonomous in daily self-care. Conclusions: Adolescents with ASD can potentially meet the needs of their daily care independently.

Keywords

• Caregiver experience
• main caregiver
• adolescent
• ASD
• self-care
• basic needs