Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

Abstract

Purpose

Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.

Materials and methods

Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.

Results

In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.

Conclusions

Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.

IMPLICATIONS FOR REHABILITATION

• The heavy burden placed on families by sleep problems in children with cerebral palsy warrants acknowledgement in paediatric healthcare.

• Sleep should be routinely addressed by clinicians during health assessments using a family-centered, and multidisciplinary approach.

• Healthcare professionals ought to adopt a proactive, understanding, and non-judgmental attitude when addressing sleep problems.

• Future research should focus on developing sleep intervention strategies that take into account the diverse parental concerns and needs unique to each family situation.

Keywords:

• Sleep
• children
• cerebral palsy
• parents’ perspectives
• family-centred care
• qualitative research

Acknowledgements

The authors would like to express their gratitude to the parents who shared their experiences with us, and parent organisations CP Nederland and OuderInzicht for their collaboration. We thank Barbara Uelkes and Nicole IJff for transcribing the interviews, Ian & Hilde Hall for their support in translating quotations, and Floryt van Wesel, expert in qualitative research, for her assistance in structuring categories and construction of themes during the analysis.

Disclosure statement

The authors report no conflicts of interest.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.