Caregivers' Experiences of Sleep Systems for Children with Complex Neurodisability: A Qualitative Study.

Abstract

Aim: To understand caregivers' experiences of implementing sleep systems for children with complex neurodisability. This knowledge would help develop and refine the evidence base to inform clinical practice to improve care and support increased engagement and adherence to this approach.

Methods: Semi-structured interviews were conducted with nine caregivers (7 mothers, 2 fathers) of eight children aged 4-17 years (mean age 7.7 years) with complex neurodisability. Interviews were audio-recorded and transcribed. Interpretive Description methodology and inductive analysis based on Morse's four-step framework were employed to analyze the data.

Results: Three themes were developed: (1) It's a complex night; (2) This is what I know, incorporating subthemes "What I know about my child" and "What I know about sleep systems"; and (3) Support me to support my child. Sleep system interventions that account for nighttime health complexity and address caregivers' priorities of sleep and comfort for their child were perceived as more sustainable and successful by caregivers.

Conclusion: Embedding principles of family-centered care in sleep system assessment, prioritizing caregivers' goals of sleep and comfort, and fostering hope and trust through the co-production of postural care solutions are critical components of care. A shift in focus from "future prevention" of deformity to "protection and comfort" may advance the quality of care and uptake of sleep systems.