Did You Know That Every Day Counts as a Century? Parents' Experiences of Caring for Children with Neurodevelopmental Disorders

Abstract

Background: Given the increasing incidence of neurodevelopmental disorders (NDDs) and limited resources, particularly in developing countries, caring for children with NDDs imposes a substantial burden on families. Objectives: This study aimed to explore parents’ experiences and the unique challenges they face when caring for children with NDDs, and to identify factors that affect their physical and psychological well-being. Methods: This qualitative study employed the content analysis method of Elo and Kyngäs. The study was conducted in 2025 using purposive sampling with maximum variation. Thirteen parents of children with NDDs who had been referred to child psychiatrists at hospitals were included. Data were collected through semi-structured face-to-face and telephone interviews. Results: Analysis of the interviews generated 473 initial codes, which were refined to 394 codes. These codes were organized into 7 subcategories and 3 categories under the overarching theme of "the parental burden of caring." Parents of children with NDDs experienced substantial challenges, including emotional disconnection, social dissociation, and financial distress. Conclusions: Parents of children with NDDs face multiple caregiving challenges, including managing competing responsibilities, navigating the health care system, and coping with emotional and social burdens. Understanding these experiences can help health system policymakers increase awareness and develop supportive strategies that address families' needs.