Cystic Fibrosis (CF) is an inherited and life-limiting chronic illness which affects multiple organs including the lungs and digestive system. CF can lead to many symptoms including chronic cough, poor weight gain and chest infections, which all vary in their intensity. Over the last two decades illness outcomes for those with CF have dramatically improved. Despite this, those with CF still experience significant challenges, including psychological, social and physiological difficulties, as well as a significant treatment burden.

Sleep problems are a challenge commonly reported for children with CF at a higher rate than their healthy peers. Common sleep issues include sleep related breathing disorders, reduced total sleep time, lower sleep efficiency, increased frequency of arousals, and a longer duration of wakefulness after sleep onset. This is especially problematic as sleep problems are associated with increased severity of lung disease, low mood and decreased quality of life in those with CF. Research has found that children with CF can experience sleep problems resulting from non-respiratory factors, suggesting that their sleep difficulties may be amenable to psychosocial sleep interventions.

Psychosocial sleep interventions are a category of interventions that focus on the underlying psychological or behavioural factors that impact sleep. These interventions can include cognitive behavioural techniques, sleep hygiene modifications, stimulus control techniques, sleep restriction, extinction procedures and relaxation strategies. Psychosocial sleep interventions have been found to be effective in improving sleep among typically developing children and children with neurodevelopmental disabilities, however, no research has explored the use of these interventions among children with CF. This thesis aims to investigate the use of psychosocial sleep interventions for children with CF and sleep problems through two studies.

Study one involved a systematic review of the effectiveness and acceptability of psychosocial sleep interventions among children with various Chronic Health Condition(s) (CHC), including children with respiratory conditions, diabetes and epilepsy. The review identified 13 studies which investigated the use of behavioural strategies, cognitive behavioural therapy for insomnia and motivational based interviewing techniques. The overall findings from the review were promising, with 12/13 studies reporting at least some improvement in sleep outcomes across participants. Additionally, improvements were seen in daytime behaviours, quality of life and symptoms of depression and anxiety following sleep treatment. While promising, the findings of the review are limited due to the small number of studies focused on each CHC condition, as well as methodological limitations (e.g., limited experimental control). Despite these limitations, the use of psychosocial sleep interventions emerged as a promising avenue for future research.

The findings of study one were used to inform study two. The aims of study two were to investigate the effectiveness of a psychosocial sleep intervention for a child with CF. Study two also aimed to investigate if any change in sleep would result in secondary improvements in the child and parent’s wellbeing, and if the intervention would be considered acceptable to the parents. Within this study a multi-component psychosocial sleep intervention was implemented with a five-year-old boy with CF who was experiencing problematic night waking (NW) and unwanted co-sleeping. The intervention involved three sequential phases, beginning with sleep/wake rescheduling, followed by the use of reinforcement and a social story, and finally modification to parental responses to NW.

Following intervention, the frequency and duration of NW decreased significantly, which was maintained at six weeks follow up. Additionally small improvements were reported in his quality of life and daytime behaviour as measured using the Pediatric Quality of Life Inventory and Child Behavior Checklist administered pre- and post-intervention. Some improvements were also reported in parental sleep, however, few changes were observed in regard to parental emotional wellbeing and parental relationship quality using the Depression Anxiety and Stress Scales –21 and the Relationship Quality Index. The intervention was reported be highly effective and acceptable. Despite these promising findings, further replication is needed which builds upon the limitations in existing research, including this study.