Problems Faced by Parents of Children with Neurological and Neurodevelopmental Disorders: A Narrative Review

Abstract

Background. Epilepsy, cerebral palsy (CP) and autism spectrum disorder (ASD) are lifelong or long-term conditions in which parents become the child’s primary carers, advocates and decision-makers. The demands of this role reach well beyond the clinic and into the parents’ own mental health, relationships, finances and access to services.

Objective. To synthesise published evidence on the psychological, social, financial and healthcare-related problems faced by parents of children with neurological and neurodevelopmental disorders, with particular attention to the Indian context.

Methods. A narrative review of 50 studies published between 2000 and 2026 (22 on ASD, 14 on CP, 12 on epilepsy and 2 on mixed neurological or neurodevelopmental conditions; 9 from India). Design, population, condition and outcomes were extracted for every study and the findings were organised through thematic synthesis, guided by a framework that combines caregiver burden and parenting stress, the stress, appraisal and coping model, and the biopsychosocial ICF-CY perspective.

Findings. Seven themes emerged: (1) unmet needs, information gaps and limited access to healthcare; (2) parenting stress, psychological distress and poor mental health; (3) caregiver burden and reduced quality of life; (4) coping and adaptation; (5) stigma, guilt and strained social relationships; (6) financial strain, employment loss, physical ill-health and gendered caregiving; and (7) social support, interventions and other protective resources. Parenting stress appeared as a shared outcome across all three conditions, and was consistently higher where the child’s symptoms or behaviours were more severe. Mothers carried a disproportionate share of the burden.

Conclusion. Parental problems in this field are multidimensional and interlinked rather than separate. Indian evidence remains thin, fathers are under-studied, and few studies follow families over time. Family-centred services, psychoeducation, counselling, peer support and financial linkage should be treated as part of routine care for these children, not as optional extras.