Coping with social stigma : correlates and predictors of loneliness in family caregivers of autistic adults
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Family caregiving can be rewarding, but also difficult and socially isolating for many. Aging family caregivers (FCG) of autistic adults providing lifelong care experience chronic stress, stigmatization, and social isolation posing risks to their health, well-being, and quality of life. A systematic review found social support and coping strategies are modifiable factors that aided FCG resilience, measured as psychological well-being and quality of life, while stigmatization and caregiver burden impeded resilience. However, the included studies were challenged by inconsistent use of theory, definitions, and measurement, making comparisons difficult. To date, little is known about autism FCG social connection, e.g., social integration (network size and roles), and none have examined loneliness in the context of autism stigma. This study aimed to describe FCGs of autistic adults and identify factors associated with and predictive of FCG loneliness. Guided by the Transactional Model of Stress and Coping, this cross-sectional dissertation study examined the characteristics of 79 adult FCGs and autistic adults and relationships between FCG sense of coherence, social isolation, stigma, coping, and loneliness. FCGs were recruited through autism community agencies, and data were collected online between September 18, 2023, and January 24, 2024. Principal components analysis and Cronbach's alpha assessed the validity and reliability of instruments in this sample. Data were analyzed using measures of central tendency, Pearson's product-moment correlation, and hierarchical regression. This study found that FCGs of AAs loneliness scores (M = 25.68 [SD = 6.04]) were significantly higher than a national sample of same- age peers (M = 20.10 [SD = 5.66], t(1, 65) = 7.509, p < .001), specifically, 41 percent of FCGs experienced moderately high and 18 percent very high loneliness. FCG loneliness was positively associated with affiliate stigma, r(64) = .490, p < .001, and negatively associated with social integration, r(64) = - .382, p = .002) and SOC, r(64) = - .664, p < .001. After controlling for FCG and AA characteristics, higher FCG loneliness was predicted by higher affiliate stigma ([beta] = 0.347, p < .01) and coping ([beta] = 0.264, p < .05), whereas lower loneliness was predicted by higher social integration ([beta] = - 0.367, p < .05) and SOC ([beta] = - 0.467, p < .01). Given that FCGs of AAs experience high levels of loneliness, there is an urgent need for programs to increase social connection and decrease affiliate stigma, which may benefit the health and well-being of FCGs of autistic adults by preventing chronic illness and early mortality associated with social isolation and loneliness. These findings can guide clinicians working with FCGs of autistic adults to identify opportunities to increase social connection. The results of this study provide a starting point for research and developing programs to reduce stigmatization and the utility of peer groups to reduce social isolation and loneliness in this understudied population.
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Ph. D.