“That he won't experience life like he should”: Exploring worries of family caregivers of transition-age autistic youth

Abstract

BackgroundCaregiver (CG) worry, a dimension of CG burden, has rarely been explored in CGs of transition-aged autistic youth. The present study investigated CG, youth, and service characteristics as potential predictors of CG worry and explored expressed concerns from CGs about their autistic youth and their care. MethodData were drawn from a study of 174 family CGs of transition-age autistic youth (age 16–30 years), living in a midwestern metropolitan area. Using a CG worries scale, CGs rated eight worries (e.g., worry about youth’s safety, etc.) experienced in the past six months. An OLS regression model of CG worry focused on predictors of CG characteristics (age, health, financial burden, involvement in youth’s care), youth characteristics (age, social engagement, adaptive functioning, problematic behavior) and service characteristics (access barriers and engagement in transition planning). CG responses to an open-ended question about their greatest worry regarding the youth and their care were analyzed thematically. ResultsCGs were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Regression models indicated that CG worry was predicted by problematic behaviors and barriers to accessing services. The expressed CG worries were grouped into four themes, including youth reliance on family CGs, possibilities for the youth’s future, youth relationships, and support for youth. ConclusionsThese findings support the need for improved access to services for transition-aged youth and raise awareness of the need for potential services and interventions to help families manage various worries during this time.