Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call
Creators: name: Hulst, Raquel Y.
name: Voorman, Jeanine M.
name: Pillen, Sigrid
name: Ketelaar, Marjolijn
name: Visser-Meily, Johanna M.A.
name: Verschuren, Olaf
Publisher: name: Taylor & Francis
Year: 2020
Subjects: subject: Medicine
subject: Neuroscience
subject: Sociology
subject: FOS: Sociology
subject: 69999 Biological Sciences not elsewhere classified
subject: FOS: Biological sciences
subject: Science Policy
subject: 111714 Mental Health
subject: FOS: Health sciences

description: 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. 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. In total, sixteen themes were identified across the three domains. Within the families’ <i>Current situation</i>, 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 <i>Concerns</i> and <i>Needs</i> 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. 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 REHABILITATIONThe 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. 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.