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|Title: ||Attention deficit hyperactivity disorder: exploring parents’ information needs to support treatment decision making and utilisation|
|Authors: ||Ahmed, Rana|
|Issue Date: ||23-Jan-2015|
|Publisher: ||University of Sydney|
Faculty of Pharmacy
|Abstract: ||The use of pharmacotherapy for the management of attention deficit hyperactivity disorder (ADHD) remains a subject of ongoing controversy, despite its recognition throughout international treatment guidelines as a first-line approach. Conflicting information resources can complicate parents’ decisions regarding the initiation and continuation of treatment for their child, a situation exacerbated by communication difficulties encountered during clinical consultations. Suboptimal adherence and persistence rates have been identified amongst children and adolescents receiving pharmacotherapy for the disorder, representing a major barrier to effective treatment.
The overarching aim of the research presented in this thesis was to examine issues concerning the utilisation of pharmacotherapy amongst families of children and adolescents diagnosed with ADHD with a particular focus on the availability and access to relevant, reliable and quality information sources to: (1) enhance understanding of the disorder and its treatments and (2) to support parents’ treatment decisions and enhance the potential for shared decision-making (SDM) with clinicians.
This research project commenced with two systematic reviews which highlighted the prevalence of underutilisation of prescribed treatments and the range of factors contributing to this phenomenon, underscored by a need for greater efforts to improve parents’ access to relevant and reliable information sources. A series of focus groups conducted with parents and cares of children with ADHD reinforced this notion and revealed parental interest in a tailored resource to facilitate communication and information gathering during clinical consultations. These findings informed the development of a novel ADHD-specific question prompt list (QPL), designed to encourage parents to ask relevant questions during consultations and support their capacity for SDM. The content of the QPL was validated through the innovative use of a Delphi process to achieve consensus between key stakeholders about the relevance and importance of included items. Established user-testing methods were then used to evaluate the performance of the QPL. In the pilot study of the acceptability and usefulness of the QPL in clinical environments, both parents and clinicians expressed strong support for the resource.
Overall, this work demonstrates that parents’ treatment decisions are influenced by a range of factors. However, deviations from prescribed regimens and non-persistence more specifically, are often underscored by parents’ inability to access relevant and reliable information sources. The QPL developed represents one of the first interventions designed to address parents’ specific information needs with the potential to enhance their capacity for SDM and improve utilisation of treatment as a consequence.|
|Access Level: ||Access is restricted to staff and students of the University of Sydney . UniKey credentials are required. Non university access may be obtained by visiting the University of Sydney Library.|
|Rights and Permissions: ||The author retains copyright of this thesis. It may only be used for the purposes of research and study. It must not be used for any other purposes and may not be transmitted or shared with others without prior permission.|
|Type of Work: ||PhD Doctorate|
|Type of Publication: ||Doctor of Philosophy Ph.D.|
|Appears in Collections:||Sydney Digital Theses (University of Sydney Access only)|
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|AHMED Rana - Final Thesis.pdf||Final Thesis||28.11 MB||Adobe PDF|
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