Lived Experiences of Caregivers of Children With Neurodevelopmental Conditions in Addis Ababa, Ethiopia: A Phenomenological Study

Caregivers of children with neurodevelopmental disorders experience significant multifaceted burdens. However, little qualitative research has been done to explore caregivers’ lived experiences in relation to the effect of burden and coping strategies in the study area. The study sought to investigate caregivers’ awareness problems, coping mechanisms, and support systems in caring for children with neurodevelopmental disorders in Addis Ababa, Ethiopia. The study was conducted in three public, non-teaching hospitals in Addis Ababa, Ethiopia. Using a descriptive phenomenological technique. In-depth interviews were conducted with 15 purposively selected caregivers. The data was analyzed using Braun and Clarke’s six-phase framework technique. The analysis found six interrelated themes: Awareness and Perception of Neurodevelopmental Disorders (NDDs), Emotional Responses to Diagnosis and Adaptation, Caregiving Roles and Responsibilities, Multidimensional Burden and Challenges, Coping Strategies and Adaptation Mechanisms, and Support Systems and Structural Barriers. Bronfenbrenner’s ecological systems theory was used to explain how personal, institutional, and systemic factors explain participants’ experiences and interpret caregiving realities. These findings underscore the call for integrated and collaborative efforts to address individual and system-level challenges among caregivers. Enhancing support systems, mitigating stigma, and correcting systemic inadequacies can improve caregiver well-being and optimize care for children with NDDs.