Children with intellectual disabilities in a low-resource setting: a qualitative study of parents’ perspectives

Abstract

Intellectual disability is a neurodevelopmental condition that substantially affects the lives of children worldwide. Despite increasing global recognition of intellectual disability, little is known about how children's daily lives unfold in low-resource settings. Therefore, this study is aimed at exploring the lived experiences of children with intellectual disabilities in Dessie City, Ethiopia, from the perspective of their parents. A qualitative study guided by a hermeneutic phenomenological design was employed. Data was collected through in-depth interviews with the parents, supplemented by concurrent field note documentation. Interviews were audio-recorded, transcribed verbatim, and thematically analyzed using Open Code 4.03 software. Five major themes were identified: intrinsic health and functional challenges, exposure to harm and protection risks, structural and systemic service exclusion, restricted developmental trajectories and future uncertainty, and drivers of adverse lived experiences. The parents highlighted that children with intellectual disabilities often experience coexisting medical conditions. They also reported that children with intellectual disabilities face speech and hearing difficulties, which create barriers to effective communication and social integration. The parents noted that children's cognitive limitations increase their vulnerability to risks such as accidents, violence, and exploitation. They underlined that children with intellectual disabilities lack essential services such as inclusive education, healthcare, and protection services. CONCLUSION: This study demonstrates that children with intellectual disabilities face multiple and intersecting adverse experiences. The findings underscore the need to strengthen support systems, enhance community awareness programs, and improve equitable service delivery. WHAT IS KNOWN: • Children with intellectual disabilities often experience cognitive and functional limitations that affect their communication, adaptive behaviors, and daily routines. • They are at increased risk of stigma, discrimination, and structural and systemic service exclusions, particularly in low-resource settings like Ethiopia. WHAT IS NEW: • This study illustrates how biological limitations intersect with social, cultural, and structural factors to intensify the adverse effects of intellectual disability. • The study elucidates children's experiences through parents' narratives, shifting emphasis from caregivers' burden alone to child-centered, life-course perspectives.