"Glimmers of Hope and Good Things": Positive Aspects of Caregiving to Youth with Autism Spectrum Disorders

Background and Purpose: Although the challenges that families face providing care to youth with autism spectrum disorders (ASD) are amply documented, far less research has examined positive experiences in caregiving. “Positive aspects of caregiving” has been widely defined, ranging from absence of burden to general resilience to meaning-finding. However, concepts comprising the positive aspects of caregiving for youth with ASD have been scarcely explored. This study aimed to: (1) identify caregiver-reported positive aspects of caregiving for youth with ASD; (2) examine youth and family characteristics related to the positive aspects of ASD caregiving; and (3) illuminate key concepts comprising positive aspects of caregiving, as reported by caregivers in their own words.

Methods: Data were drawn from a study of 174 family caregivers of ASD adolescents and young adults (age 16-30) in a midwestern metropolitan area. Caregivers completed semi-structured interviews with standardized scales and open-ended questions regarding their caregiving experiences. Caregivers completed the 9-item Positive Aspects of Caregiving scale (Tarlow et al., 2004), measures of their social support and coping, and measures of youth behavior, functioning, and service use. We employed a parallel nested mixed-methods design. Hierarchical OLS regression was used to examine caregiver demographics (minority race/ethnicity, household income), ASD youth characteristics (adaptive & problematic behavior, youth helping behavior), and caregiver coping and social support as predictors of positive aspects of caregiving. A phenomenologically-informed approach to thematic analysis was used to explore caregiver-voiced dimensions of positive caregiving.

Results: Caregivers scored moderately high on positive aspects of caregiving (M = 32.94, SD = 6.79, range 9-45). The final regression model explained 32% of variance in positive aspects of caregiving. Youth helping the caregiver (b = 0.50, p < .001) and greater use of instrumental support (b = 0.56, p = 0.04), religious coping (b = 0.45, p = 0.03), and acceptance (b = 1.37, p = .01) emerged as significant predictors. Although caregiver minoritized race was initially associated with reporting more positive aspects of caregiving, no significant relationship was observed in the final model. Qualitative analyses identified five core themes. Within the caregiver-youth relationship, caregivers described (1) observing children’s happiness, (2) witnessing their developmental progress and growth, and (3) enjoying emotional reciprocity from youths’ demonstrations of gratitude and affection. Introspectively, caregivers described caregiving as (4) nurturing their resilience and self-development, and (5) increasing their advocacy and awareness of overall disability experiences. These elements speak to the unique nature of caregiving for ASD youth that may not be captured by the original positive aspects measure.

Conclusion and Implications: This study identified youth helping behavior and caregiver multidimensional coping as predictors of positive aspects of caregiving to ASD youth. Caregivers reported experiencing these positive aspects through interactions with and observations of the youth, and through internal growth. Work is needed to refine measurement of positive aspects of caregiving in the context of caring for ASD youth. Future research should explore contributions of positive aspects of caregiving to outcomes such as burden and well-being, with an eye toward developing interventions to support family caregivers.