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dc.contributor.advisorDay, Andrew S
dc.contributor.advisorGearry, Richard B
dc.contributor.authorHurley, Angharad
dc.date.available2020-02-21T00:49:46Z
dc.date.copyright2019
dc.identifier.citationHurley, A. (2019). Self-management outcome measures for children with inflammatory bowel disease (Thesis, Doctor of Philosophy). University of Otago. Retrieved from http://hdl.handle.net/10523/9907en
dc.identifier.urihttp://hdl.handle.net/10523/9907
dc.description.abstractPaediatric Inflammatory Bowel Disease (IBD) can significantly affect a child’s physical and psychological well-being, and the incidence is increasing globally. An emerging focus of paediatric IBD care that has the potential to improve disease outcomes is that of self-management, whereby children are encouraged to develop skills and attributes to enable them to manage their own disease and treatment. Self-management comprises a number of intertwined elements; knowledge, adherence, self-regulation, and communication. In order to provide targeted support in these areas’ children should be frequently assessed to highlight gaps or misconceptions that may affect their disease outcomes. Few self-management outcome measures are available for this population group. The aim of this research was to undertake a series of projects to develop and validate assessment and reporting tools that address components of self-management in order to provide targeted education and support for children with IBD. This research also contributed to the design of a mobile health app that is aimed at encouraging children with IBD to self-manage their disease. Section one explains the detailed, iterative development process of a mobile health app aimed at encouraging self-management for children with IBD: IBD-Tracker. Section two presents the development process of a knowledge assessment tool for children with IBD: IBD-KID2. A series of studies were performed to assess the validity, reliability, feasibility, and generalisability of IBD-KID2, as well as testing IBD knowledge levels in different population groups. Section three details the development of a symptom self-report tool for children with IBD that uses a series of text and pictorial Likert scales that enables children to report their IBD symptoms: IBDnow. A study performed in two tertiary paediatric IBD centres showed that children from the age of three years can use IBDnow to produce symptom reports with a good level of agreement to reports from their gastroenterologist when using standard validated clinical tools. Section four contains a systematic literature review undertaken to identify self-management skills assessment tools specific to the target population, none of which were appropriate for use with younger children with IBD. Using the available evidence, a novel self-management skills assessment tool was developed: IBD-STAR. A content validity evaluation by a series of experts appraised the relevance, appropriateness, and likely effectiveness for the target population. A study then compared the children’s skills assessment using IBD-STAR with an assessment undertaken by their parents, and gastroenterologist. This showed that children’s reported skills using IBD-STAR correlated well with their gastroenterologist’s assessment, but their skills were underestimated by their parents. Section five assessed whether the content of the mHealth app IBD-Tracker, when delivered in an alternative format (booklet) was effective and acceptable regardless of the mode of delivery. The results highlighted a positive trend towards improving self-management outcomes, but the response rates and feedback suggest that interventions aimed at children should prioritise engagement in addition to ensuring a strong evidence base for the content. Children with IBD should have multi-disciplinary support as they develop self-management skills. This series of studies has provided a number of outcome measures to address the various components of self-management for children with IBD that will highlight where targeted interventions, such as a mobile health app, may be effective.
dc.language.isoen
dc.publisherUniversity of Otago
dc.rightsAll items in OUR Archive are provided for private study and research purposes and are protected by copyright with all rights reserved unless otherwise indicated.
dc.subjectInflammatory bowel disease
dc.subjectchildren
dc.subjectSelf-management
dc.subjectoutcome measures
dc.subjectadherence
dc.subjectknowledge
dc.subjectself-regulation
dc.subjectcommunication
dc.subjectmHealth
dc.titleSelf-management outcome measures for children with inflammatory bowel disease
dc.typeThesis
dc.date.updated2020-02-20T03:52:01Z
dc.language.rfc3066en
thesis.degree.disciplinePaediatrics
thesis.degree.nameDoctor of Philosophy
thesis.degree.grantorUniversity of Otago
thesis.degree.levelDoctoral
otago.interloanno
otago.openaccessAbstract Only
otago.evidence.presentYes
otago.abstractonly.term50w*
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