The purpose of this chapter has been to provide an introduction to the participants, the families and their sleep. This allows understanding of pertinent
152 background and contextual information prior to presenting the following four analysis chapters.
The chapter outlined information about the participants, focusing specifically on the child with CP and included details about the child’s cerebral palsy and what this means in terms of the severity and type of CP, the effect on movement/posture and on communication using definitions from the GMFCS (Palisano et al., 1997), the CFCS (Cooley-Hidecker et al., 2011) and the Surveillance of Cerebral Palsy in Europe consensus report (SCPE, 2000).
Information about the additional impairments and health needs of children with CP (where applicable), including details of prescribed medication, was drawn from the clinical section of the Chailey sleep questionnaire and has been outlined. The sleep questionnaires completed by, or on behalf of, all the participants were drawn on to also provide an overview of the sleep of the participants and the families.
As demonstrated all the participants and the families differed. This is particularly evident for those children with CP. As discussed in the introduction of this thesis, cerebral palsy must be considered as a descriptive term and the effects that it has on people with CP, with regards to movement, posture, communication and additional health needs will vary greatly from individual to individual. These differences and the differences between siblings and children with CP became a focus and important element in understanding the sleep of children with CP and their families, as will be discussed in the following data analysis chapters. Therefore, the aim of this chapter was to ‘set the scene’ and provide information that would help in the reading and understanding of the forthcoming analysis chapters.
The following four chapters present analysis of the qualitative interviews.
Chapters 7 and 8 primarily draw on qualitative data from the interviews with children with CP and their siblings. Chapter 9 presents data from the children and the parents and Chapter 10 draws on interview data of the parents.
Figures 6.2-6.5 present the themes and sub-themes for each of the analysis chapters.
153 Figure 6.2 Themes and sub-themes of Chapter 7
Chapter 8 Figure 6.3 Themes and sub-themes of Chapter 8
154 Chapter 9
Child interview data
The bedroom
Bedroom use – siblings &
mild CP
Bedroom use – severe CP
Clinical Items
Hoists Adapted bed
Downstairs location – severe CP
Extension of public space
A shared space Parent
interview data
Chapter 10
Parent interview data
Night-time monitoring
Low level monitoring
Informal monitoring
Technological monitoring
Combination monitoring
Co-sleeping
Figure 6.4 Themes and sub-themes of Chapter 9 Figure 6.5 Themes and sub-themes of Chapter 10
155 Chapter 7 explores the meanings of sleep for children and emphasises the social context of sleep through the children’s discussions of the activities, routines and practices that precede and follow night-time sleep. Differences are highlighted based on the child’s age and for children with severe CP compared to those without. One difference explored in depth is the presence of paid carers to help children with severe CP at bedtime. The impact of sleeplessness on self and others within the family also emerged as a theme from the children’s interviews.
Chapter 8 also examines the social context of sleep children with CP.
The focus of this chapter is on the actors, activities and artefacts that children discussed as either disturbing/disrupting or helping their sleep. Some of the hindrances to sleep include bodily and physical needs and being disturbed by other family members. Factors that help sleep include mum and dad, cuddly toys and pet cats. Differences are evident depending on the age of children and the presence and severity of CP. I make reference to the ‘younger’ and ‘older’
children throughout the rest of the thesis. ‘Younger’ children refer to those aged 6 to 8 years and ‘older’ children to those aged 9 years to 13 years.
Chapter 9 focuses on the bedroom (specifically children’s bedrooms) which emerged as an important theme from interviews with both children and parents. Factors relating to the use, location and meanings associated with bedrooms are highlighted as are the differences, related to these factors, between children with and without severe CP. A number of young people with severe CP have their bedroom located downstairs when the rest of the family have theirs upstairs. The reasons and meanings related to this and the concept of privacy are explored in detail.
Chapter 10 draws on the interview data of parents and focuses on their discussions of the night-time monitoring they undertake of their children with CP. The level and method of night-time monitoring differs between families and is determined by a number of factors including severity of the child’s CP, location of bedrooms and co-morbid health issues of the child with CP. The impact of night-time monitoring on the parents’ own sleep also differs depending on the method engaged in. For two families co-sleeping was discussed as a
156 useful (occasional) strategy to help their child with CP and to protect the sleep of the family.
157