Understanding and Addressing the Impact of Parental Stress and Stigma in Raising Children with Autism Spectrum Disorder (ASD) in Low-Resource Settings

Abstract

The burden on parents raising children with Autism Spectrum Disorder (ASD) is escalating globally, particularly in middle and low-income countries, where access to resources and support is limited. This study aimed to investigate the levels of stress, stigma, and coping strategies among parents of children with ASD in Kawempe Division, Kampala, Uganda. Through a sample of 28 parents drawn from Katalemwa Cheshire Home, data was collected using self-administered questionnaires and analyzed using descriptive statistics. The results revealed very high levels of stress and stigma among parents, as evidenced by a grand mean of 3.71 (SD = 0.79) for stress and 3.57 (SD = 0.55) for stigma. These stressors encompassed various domains, including financial difficulties, marital conflicts, and psychological strain resulting from societal discrimination. Parents reported experiencing feelings of shame, embarrassment, and hopelessness, exacerbated by societal misconceptions and the lack of support systems. Notably, the prevalence of anxiety symptoms among parents (45.9%) surpassed previous estimates, indicating a significant mental health burden within this population. Furthermore, the coping mechanisms employed by parents were found to be inadequate, with a grand mean of 1.78 (SD = 0.77) for coping strategies. Positive coping strategies, such as seeking new job opportunities for their children, were limited, while negative coping mechanisms, including substance abuse and rudeness, were more prevalent. These findings underscore the urgent need for tailored interventions to equip parents with effective coping strategies and stress management techniques. The study highlights the challenges faced by parents raising children with ASD in low resource settings, shedding light on the psychological, social, and economic burdens they endure. Addressing these challenges requires comprehensive support systems, including training programs, workshops, and access to resources aimed at empowering parents and enhancing their well-being. By understanding and addressing the specific stressors and coping mechanisms within this population, interventions can be developed to alleviate the burdens faced by parents, ultimately improving their quality of life and promoting the holistic development of children with ASD. Keywords: Stress, Stigma, Coping Strategies, Autism Spectrum Disorder, Raising children