Sleep concerns in children and young people with cerebral palsy in their home setting

McCabe, Susan; Blackmore, Amanda Marie; Abbiss, Chris R.; Langdon, Katherine; Elliott, Catherine

doi:10.1111/jpc.12933

Cited by 20 publications

(24 citation statements)

References 46 publications

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“…Intervention strategies related to the clinical setting may in turn require educating healthcare professionals to improve their sleep knowledge, as well as adaptations on an organisational level in order for sleep to become a standard item for review during routine health assessments. Moreover, effective sleep assessment should be broad enough to screen for all kinds of sleep issues, yet focused enough to target specific individual parental concerns and needs [40]. This approach should result in healthcare-based interventions that are tailored to the unique and diverse family situations.…”

Section: Discussionmentioning

confidence: 99%

“…It may well be that parents of the most severely impaired children experienced a greater burden of care demands at night, with a greater impact on family functioning and wellbeing. Concerns about sleep have been found to vary across ages in children and young people with CP, but are present at every GMFCS level [40]. Despite the use of a convenience sampling method, we managed to reach great variation in age and GMFCS levels between children.…”

Section: Strengths and Limitationsmentioning

confidence: 92%

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

Hulst

Voorman

Pillen

et al. 2020

Disability and Rehabilitation

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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. ä 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.

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Section: Discussionmentioning

confidence: 99%

Section: Strengths and Limitationsmentioning

confidence: 92%

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

Hulst

Voorman

Pillen

et al. 2020

Disability and Rehabilitation

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“…In sleeping scores was found 13% of children with CP, and there was at least one abnormal score in sleep questionnaire in %35. Another study of Romeo et al (24) found that more than 40% of children with CP presented with at least one sleep disorder, and there was a relationship between sleep disturbance and GMFCS level V. McCabe et al (25) argued that several sleep problems exist in each GMFCS level. The children and adolescents with CP were reported to be affected by sleep disorders at any age and every GMFCS level (25).…”

Section: Among Those 52 Children With Sleep Problems Thementioning

confidence: 99%

“…Another study of Romeo et al (24) found that more than 40% of children with CP presented with at least one sleep disorder, and there was a relationship between sleep disturbance and GMFCS level V. McCabe et al (25) argued that several sleep problems exist in each GMFCS level. The children and adolescents with CP were reported to be affected by sleep disorders at any age and every GMFCS level (25). Hemmingsson et al (6) claimed that sleep problems are even more severe among children in GMFCS level IV and V. Adiga et al (26) reported that there was no significant correlation between GMFCS levels and sleep disorders.…”

Section: Among Those 52 Children With Sleep Problems Thementioning

confidence: 99%

Serebral Palsi̇li̇ Çocuklarin Uyku Problemleri̇ Ve Kaba Motor Fonksi̇yon İli̇şki̇si̇ Ve Ebeveynleri̇ni̇n Yaşam Kali̇tesi̇ni̇n İncelenmesi̇

Karabulut

Avcı

2020

Türk Fizyoterapi Ve Rehabilitasyon Dergisi

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Purpose: Sleep problems commonly seen in children with cerebral palsy (CP) adversely affect daily living activities and treatment participation. The study aimed to investigate the relationship between sleep problems and gross motor function levels in children with spastic CP and to determine parents' quality of life (QOL). Methods: Sixty children with spastic CP and 60 typically developing children between the ages of 4 and 12 years and their parents were enrolled in the study. After obtaining demographic data, Gross Motor Function Classification System (GMFCS) was used to determine motor function levels. International Classification of Diseases-10 was used for cognitive function. Children's Sleeping Habits Questionnaire measured children's sleeping habits. The Nottingham Health Profile was used to evaluate parents' QOL. Results: Fifty-two (86.7%) children with CP had sleep disorders. Sleep disturbance values were significantly higher in the CP group than the controls (52.7±7.6 vs 41.5±8.01, respectively), p=0.001. There was no significant difference between GMFCS levels and sleep disorders in children with CP (p>0.05) except morning fatigue (p=0.028). There was no difference between cognition, medication use, and sleep problems (p>0.05). Parents' QOL was found to be worse in the CP group (p=0.001). Conclusion: Rate of sleep disorders in children with CP was higher than controls. Their mothers' QOL values were found to be worse. Conditions that may be associated with sleep disorders in children with CP and their parents' conditions need to be better identified and screened.

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“…(3,(9)(10)(11)(12)(13)(14) have explored the impact of the child's sleep problems on the parent. Again, there is a paucity of Australian based studies that specifically focus on CP, with only two published studies, a pilot (15) that led to the current study and a larger study, (16) which was a retrospective audit of children who attended a sleep service.…”

Section: Introductionmentioning

confidence: 99%

Sleep problems and solution seeking for children with cerebral palsy and their parents

Petersen

Francis

Reddihough

et al. 2020

J Paediatrics Child Health

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Sleep concerns in children and young people with cerebral palsy in their home setting

Cited by 20 publications

References 46 publications

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

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

Serebral Palsi̇li̇ Çocuklarin Uyku Problemleri̇ Ve Kaba Motor Fonksi̇yon İli̇şki̇si̇ Ve Ebeveynleri̇ni̇n Yaşam Kali̇tesi̇ni̇n İncelenmesi̇

Sleep problems and solution seeking for children with cerebral palsy and their parents

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