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“It’s my body, I can have a say”: The development of a theory and evidencebased intervention to prepare and support adolescents with long-term conditions to participate in shared decision-making

Jordan, Amber 2021. “It’s my body, I can have a say”: The development of a theory and evidencebased intervention to prepare and support adolescents with long-term conditions to participate in shared decision-making. PhD Thesis, Cardiff University.
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Abstract

Adolescents with long-term conditions (LTCs) often adopt a marginal role during healthcare consultations, which does not reflect their role in condition selfmanagement. Shared decision-making (SDM) gives adolescents a voice in their healthcare and treatment plans, improving the likelihood of selecting the best possible option for them. Literature in this area is limited, and much of the research to date has focused primarily on the views of parents and clinicians, with little attention to the adolescents’ perspectives. The work in this thesis describes the development and user-testing of an intervention informed by adolescents and relevant theory, which aims to prepare and support adolescents with LTCs to participate in SDM. Development and user-testing was guided by the MRC’s framework for developing complex interventions and the Person-Based Approach. A systematic review revealed that preferences of adolescents with LTCs around involvement in decisionmaking can vary substantially, but often go unmet. Reasons for the discrepancy between adolescents’ preferences and experiences were further explored in qualitative participatory interviews, and perceived barriers to, and facilitators for SDM were identified. The Intervention Mapping Approach was used to develop a theory and evidencebased intervention in the form of a 12-page booklet titled “It’s my body, I can have a say” which aimed to address the identified barriers. User-testing with adolescents with LTCs and clinicians revealed positive responses to the booklet’s key messages and design. Suggested changes were made to improve acceptability of the booklet, which included the addition of a short video and electronic format. Design for further feasibility testing was proposed. Overall, preliminary findings suggest that the intervention could be a useful tool for preparing and supporting adolescents with LTCs to be involved in SDM, and for addressing the perceived barriers to involvement. However, preparation for SDM must be paired with willing and skilled clinicians, supported by parents, and delivered within a supportive environment.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Medicine
Date of First Compliant Deposit: 19 February 2021
Last Modified: 19 Feb 2021 11:25
URI: http://orca.cardiff.ac.uk/id/eprint/138667

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