Psychological Distress among Informal Caregivers of Children with Autism: A Thematic Analysis

Dorothy John Okoro and Usen Essien Inyang
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Dorothy John Okoro: Department of Psychology, Faculty of Social Sciences University of Uyo, Uyo
Usen Essien Inyang: Department of Psychology, Faculty of Social Sciences University of Uyo, Uyo

International Journal of Research and Scientific Innovation, 2024, vol. 11, issue 11, 1098-1108

Abstract: This study examined the psychological distress experienced by informal caregivers of children with autism spectrum disorder (ASD). The study was conducted in two phases: Phase One focused on developing the interview guide, which included defining research questions and creating open-ended questions to explore the caregivers’ experiences. The guide was piloted, refined, and finalized for clarity and relevance. Phase Two involved conducting semi-structured interviews with 30 caregivers using the finalized guide. Data were analyzed using thematic analysis, which involved coding and categorizing recurring themes and patterns in caregivers’ responses to identify key challenges and coping strategies. The study identified five key themes: emotional impact, stigmatization and social isolation, financial strain, physical exhaustion, and uncertainty about the future. Caregivers reported high levels of stress, anxiety, and depression, often feeling helpless and emotionally exhausted. The lack of adequate support services and social understanding exacerbated their distress, with many feeling isolated. Financial strain and the physical demands of caregiving further contributed to psychological distress, while concerns about their children’s long-term well-being intensified anxiety. The findings highlighted the multidimensional challenges faced by caregivers, underscoring the need for comprehensive support systems. It was concluded that addressing these challenges requires a multifaceted approach, including improved public awareness, policy interventions, and tailored support for caregivers.

Date: 2024
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