Children with neurodevelopmental disorders: The burden and psychological effects on caregivers in Lagos, Nigeria

Abstract

Background: Children with neurodevelopmental disorders (CNDs) are a group requiring more attention as their care is often challenging, particularly for parents with primary caregiving roles in resource-restricted settings. This study had set out to investigate the burden and psychological distress among caregivers of children with neurodevelopmental delays. Materials and Methods: A total of 68 caregivers were recruited during the 2013 annual autism health program organized by the College of Medicine, University of Lagos in collaboration with Guaranty Trust Bank, Nigeria and Blazing Trails, USA. Of these caregivers, 60 respondents (caregivers and children) were included in the final analyses due to poorly completed questionnaires. The Zarit Caregivers Burden Scale (ZCBS) and General Health Questionnaire version 12 (GHQ-12) were administered to elicit caregivers' experience with respect to burden and psychological distress, respectively. Results: Of the 60 participants included in the final analyses, the majority constituted parents (96.3%) with mothers accounting for 71.7%; 28 (46.7%) participants were government workers and 3 (5%) were full-time housewives. The mean age of CNDs was 6.8 (±3.2) years, and 33 (55.0%) were males. Delivery by cesarian section was reported in 19 (31.8%). The common presenting complaints by caregivers were inability to walk (32.7%), repetitive behavior (25.5%), difficulty with verbal communication (10.9%), nonsocialization (9.1%), seizures (9.1%), and hyperactivity (3.6%). Problems were noticed at ≤ 1 year in 46.7% while they were noticed after 2 years in more than half the children, and a little above one-eighth (14%) had siblings with similar problems. On the ZCBS, nine (15.0%) caregivers reported a significant burden. In addition, 23 (38.3%) caregivers had psychological distress. Caregivers' burden was significantly related to the report of psychological distress in caregivers (P < 0.001) and there was a trend toward the presence of psychological distress in almost all caregivers with children experiencing seizures. Conclusions: The findings in this study underscore the need for counseling and psychosocial support for caregivers of CNDs. Further research on the emotional experience of caregivers is also warranted.

Keywords

• Burden of care
• caregivers
• children with neurodevelopmental disorders (CNDs)
• neurodevelopmental disorders
• psychological distress