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

Figures & data

Table 1. Characteristics of parents and their children.

Characteristics (N = 18)	n (%)
Parent
Role
Father	2 (11)
Mother	16 (89)
Age
20–30 years	1 (6)
31–40 years	12 (67)
41–50 years	4 (22)
51–60 years	1 (6)
Education
Secondary vocational education	2 (11)
Higher professional education	7 (39)
University education	8 (44)
Not reported	1 (6)
Child
Sex
Boy	10 (56)
Girl	8 (44)
Age	years
Range	2–15
Average (SD)	6,2 (2,9)
Median	5,5
GMFCS level
I	3 (17)
II	4 (22)
III	2 (11)
IV	4 (22)
V	5 (28)
Type of CP
Spastic	13 (72)
Dyskinetic	2 (11)
Mixed spastic & dyskinetic	2 (11)
Unknown	1 (6)
Affected side of body
Unilateral	4 (22)
Bilateral	13 (72)
Not reported	1 (6)
Siblings
yes	11 (61)
no	7 (39)

Figure 1. Representation of the identified themes mapped across the three domains (Current situation; Concerns; Needs) and environmental settings (Home environment; Healthcare setting).

Table 2. Current situation.

Current situation
Themes
Sleep disturbances and night-time monitoring
Child is paramount
Overloaded – setting priorities
Limited attention for sleep in healthcare
Lack of CP-specific knowledge
Sleep medication (melatonin) is used as first line of treatment

Table 3. Concerns.

Concerns
Themes	Sub-themes
Consequences for the child	Health and wellbeing Vicious circle of poor sleep Future
Consequences for parents	Impact on family functioning Reaching limits
The unknown	Origin and causes of sleep problems
Responsibility	Who is responsible for sleep care?

Table 4. Needs.

Needs
Themes	Sub-themes
Social support	Understanding Acknowledgement
Information	Insight into causes and consequences of sleep problems Tips, advice and guidance
More attention for sleep in healthcare	Routine inquiries Taking initiative and responsibility
Change of attitude from healthcare professionals	No judging A coaching and supportive attitude
A different approach to sleep care	Family-centred care Multidisciplinary collaboration Holistic approach – the child as a whole
A solution / intervention that works for my child	Tailor-made Finding the way