AIM: The first aim of this study was to explore the lived experiences of parents caring for their autistic children and their experiences with safety for these children. The second aim was to elicit safety recommendations from the parents of autistic children.
DESIGN: Hermeneutic phenomenology.
METHODS: Fifteen participants who self-reported they were parents of children with autism were recruited via snowball sampling. Data were collected from September 2017 - December 2018 in audio-taped interviews using semi-structured questions. Interviews were held with four participants to determine if the findings represented their experiences and concerns accurately.
RESULTS: Two underlying structures which demonstrated the trajectory of the experience caring for autistic children were: lost/finding our way and battle-ready/battle weary. The phenomenological themes within battle weary included: living with fear, living with uncertainty and living with disappointment. Resilience was a fourth phenomenological theme which supported the experience of being battle ready. The participants provided recommendations for other parents and healthcare professionals to help keep autistic children safe.
CONCLUSION: This study illustrates the unique perspective of parents of autistic children concerning autism and safety. IMPACT: Most parents in this sample reported they faced substantial issues with safety for their child. Study results demonstrated that parents received little to no information about safety from healthcare professionals. Parents of autistic children and healthcare professionals need to be educated about safety issues to prevent injuries and death.