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THE ROLE OF PARENTING INTERVENTIONS IN PROMOTING TREATMENT ADHERENCE IN CYSTIC FIBROSIS

Wells, Emma Jane

[Thesis]. Manchester, UK: The University of Manchester; 2016.

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Abstract

Within the Cystic Fibrosis (CF) literature it is acknowledged that parents play a significant role in supporting children with treatment procedures. Furthermore, a number of parenting variables have been associated with treatment adherence within the paediatric CF population. Interventions that target parenting practices may therefore have the potential to improve CF treatment adherence. Paper one presents a systematic literature review of parenting interventions targeting treatment adherence in children and adolescents with CF. The majority of studies focussed on dietary adherence and overall findings from these studies suggested that combined behavioural and nutritional counselling parenting interventions led to improvements in calorie intake and positive parenting practices. Interventions specifically targeting exercise adherence and interventions targeting multiple aspects of the CF treatment regimen were also shown to improve treatment adherence. The review highlighted that interventions targeting some of the more laborious treatments (i.e. chest physiotherapy) were lacking, as were interventions specifically tailored to the needs of adolescents and their parents. Over recent years, CF life expectancy has increased substantially due to medical advances. As a result, more children are living into adulthood, therefore needing to adhere to an increasingly complex treatment regime in order to manage increasing symptoms. Adolescence is a particularly challenging time for treatment adherence as children increase their independence and parents begin to allow the child to manage their own disease management. The study described in Paper 2 aimed to explore the acceptability and feasibility of the Self-Directed Teen Triple P parenting intervention within the adolescent CF population. It also explored whether parent-reported treatment adherence, positive parenting practices, parent wellbeing, and child emotional and behavioural functioning were increased as a result of this intervention. Whilst data from two cases indicated increasing trends in treatment adherence and positive parenting practices following the onset of the parenting intervention, uptake and retention to the intervention was poor. Interviews with parents and CF nurses indicated low acceptability and feasibility of the intervention in its current form and a number of adaptations were reported. The study concludes that researchers need to include parents within the design of tailored parenting interventions within this population in order to increase acceptability. Following this, larger scale studies are required to increase the reliability and rigor of research findings in this area.Paper 3 is a critical reflection and considers both Paper 1 and Paper 2. Within this paper the approaches used, the challenges encountered, and future research are considered.