Insights into the lives of families of children with neurodisabilities who have sleep problems.

Abstract

Objective: Sleep problems are prevalent in children with neurodisabilities and are associated with adverse health and behavioral outcomes. Published work in this area focuses on caregivers' experiences on implementing interventions for sleep and uses quantitative research methods. Qualitative accounts reporting the lived perspectives of how these problems impact the children's caregivers and families are at present limited.

Design: A qualitative study designed to understand the experiences of families of children with neurodisabilities and sleep problems.

Participants: In total, 300 caregivers of children with neurodisabilities and sleep problems were recruited from two subgroups: (i) participants whose child is attending one of three tertiary sleep clinics and (ii) participants, who responded to requests from collaborative community consumer organizations and social media promotion.

Methods: Caregivers completed an online survey that included questions about how they and their family members are affected by the sleep problems of their child with neurodisabilities. We conducted a reflexive thematic analysis of caregivers' free-text survey responses.

Results: Five themes emerged: (1) Children with neurodisabilities face complex sleep issues, often worsened by coexisting problems like pain or seizures; (2) Sleep disruption profoundly affects the whole household, including siblings; (3) Caregivers experience severe fatigue, impacting their health, cognitive function, and work; (4) Caregivers constantly try various treatments and strategies; (5) Caregivers seek tailored information, evidence-based support, and respite options.

Conclusion: Overall, families struggle with debilitating fatigue, affecting all aspects of life. Caregivers urgently call for improved healthcare responses, prioritizing sleep problem identification and holistic, family-centered support.