Understanding Barriers to Caregiver Support Engagement During Their Autistic Youth’s Transition to Adulthood: A Qualitative Analysis of Parental Perspectives
摘要
This study aims to build on previous findings by exploring the expressed reasons some caregivers of transition-aged autistic youth decide not to engage in support (i.e., asking for help or attending caregiver support groups).
MethodsThis secondary data analysis of caregivers’ responses to open-ended questions about reasons for not engaging in caregiver-related support utilized an open-ended coding approach.
ResultsA total of 90 caregivers shared insight into why they did not ask for help or attend caregiver support groups. Reasons for not asking for help included: the youth’s preferences, caregivers’ ability to care for the youth themselves, the lack of help available, the difficulty in receiving help as a child ages, barriers to trusting others with the care of their child, and awareness of barriers for others to help due to their busy schedules. Reasons for not engaging in caregiver support groups included: unique needs not served by available support, their time was better spent addressing other needs, and logistical barriers.
ConclusionsThese findings highlight critical gaps in service availability and accessibility and potential gaps in resources (i.e., more sources of appropriate support are needed) for caregivers, an often-understudied group in the related literature.