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

Paper by Raquel Y. Hulst, Jeanine M. Voorman, Sigrid Pillen, Marjolijn Ketelaar, Johanna M. A. Visser-Meily & Olaf Verschuren

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...

Visit: https://www.tandfonline.com/doi/full/10.1080/09638288.2020.1770873