Parents’ perceptions on seeking emergency medical care for their child with autism spectrum disorder – a Swedish perspective

Abstract

Background

Children with autism spectrum disorder seek acute medical care more frequently than neurotypical children. Being in a paediatric emergency department setting places considerable strain on both the children and their parents. Research exploring parental perspectives in this area remains limited, with much of the existing literature originating from North American contexts. This study aimed to explore Swedish parents' perceptions of seeking acute medical care for their children with autism spectrum disorder.

Methods

Seventeen parents were interviewed at a paediatric emergency department within a tertiary hospital in the capital region of Sweden. The interviews were analysed using manifest content analysis.

Results

The analysis resulted in the main category Being in a bipartite position, along with three generic categories: A sense of vulnerability, The child's needs are recognised, and A meaningful encounter occurs. The results revealed experiences of vulnerability and exclusion for both parents and children. However, they also conveyed a sense of partnership with healthcare professionals, in which parents felt heard, involved, and that their child was approached in an individualised and pedagogically informed manner.

Conclusion

Parental perceptions of seeking acute medical care for their children with ASD reflected a complex situation and a dual experience of vulnerability and meaningful collaboration. These insights provide valuable knowledge to support the development of a patient- and family-centered approach, enabling healthcare professionals to reduce parental distress and foster effective parent–professional partnerships, while actively involving the child.