The impact of sleep disturbances for children with cerebral palsy and their families

Background
Although sleep disturbances are common in children with cerebral palsy (CP) little is known about their nature or extent. Further, the individual and family consequences of sleep disturbances have not been reported. Objective To explore the impact of sleep disturbances on children with CP aged 3-18 years resident in Northern Ireland (NI) and their families.

Methodology
In this qualitative study online semi-structured interviews were conducted with families of children with CP. Families were recruited via social media and were eligible to participate if the child with CP was 1) aged 3-18 years, 2) resident in NI and 3) experiencing clinical sleep disturbance (as indicated by a score of 70+ on the Sleep Disturbance Scale for Children). Each family interview involved a parent, a child with CP, and a sibling. Interview type was verbal, written or proxy depending on a participant’s preference, age, communication style and cognitive ability. Interviews were video-recorded and transcribed verbatim. Inductive thematic analysis was undertaken to identify key themes. Rigor was established using member checking, confirmatory co-coding with the research team, triangulation of multiple participant perspectives and the incorporation of rich and thick descriptions.

Results
Thirty participants from 10 families participated. Most data were collected by verbal interview with the respondent (parents n=10, children with CP n=2, siblings n=6), however a small number of responses from children were either written (children with CP n=2, siblings n=3) or proxy with their parents (children with CP n=6, siblings n=1). Six themes were identified: 1) Identification and acknowledgement of sleep disturbances; 2) Personal and environmental factors contribute to sleep disturbances; 3) Mood and interpersonal relationships can be challenged but also strengthened for all family members; 4) Home and school routine are negatively impacted for all family members; 5) Physical health is negatively impacted for children with CP and their parents; 6) Parents seek support and solutions to manage sleep disturbances for their child with CP.

Conclusions / Implications for practice
Despite the wide-ranging consequences of sleep disturbances on the whole family unit, these issues are often not recognised nor addressed. Healthcare professionals should routinely ask children with CP and their families about sleep. Multi-disciplinary, family-centred support for families that experience sleep disturbances are required.