A Pilot Study: Caregiver Burden and Life-span Issues of Autism in Families of Adolescents and Adults with Autism Spectrum Disorders in Taiwan

Abstract

Less research has focused on experiences of Taiwanese mothers caring for an adolescent or adult with an autism spectrum disorder (ASD). The purpose of the pilot study was to better understand how the presence of a son or daughter with ASD affects families in Taiwan and to investigate the relationships of maternal well-being, caregiver burden, and life-span issues of autism in families of individuals with ASD. This study took a survey The methodology: The data from 20 mothers of adolescents and adults with ASD in the North of Taiwan. The mothers for this study were chosen as participants by purposive sampling from local autism associations and advocacy groups. Self-administered structured questionnaires and semi-structured interviews were conducted to elicit mothers' experiences and concerns. Results: This study pointed to considerable caregiver burden for mothers and give some indication of the associated maternal pessimism and life-span issues when raising a son or daughter with an ASD in Taiwan. Regarding caregiver burden and psychological well-being, the mothers (80%) indicated that they had moderate to extremely heavy caregiver burdens and twelve out of twenty mothers (60%) reported a high level of depression as the cut-off score of 16 has been used. In terms of life-span issues, mothers had specific worries about the future of the individuals with an ASD. They were worried about the long-term care and appropriate placement for their son or daughter with an ASD. The findings of this study may help understand Taiwanese families of individuals with ASD and elucidate the relationships of maternal well-being, caregiver burden, and life-span issues of autism in families of individuals with an ASD in the Chinese culture, which may be worth replicating with larger samples.