A young person with a misshapen skull sits down with a surgeon to decide whether to undergo another complex facial operation, often without fully understanding what the result will look like or whether the surgery will meet their expectations. This research tackles a specific gap in craniofacial care: the mismatch between what surgery can realistically achieve and what patients and their families hope for. For rare conditions like craniosynostosis, where the skull bones fuse too early, multiple surgeries stretch from infancy into adulthood. Yet current practice lacks a consistent, evidence-based approach to shared decision-making—leaving some patients with regret, distress, and difficulty adjusting to their changed appearance. The team will audio-record real clinic appointments at the Oxford Craniofacial Unit, interview young people and their caregivers before and after those discussions, and analyse how decisions are actually made. They will then interview the surgeons and nurses involved, and review existing decision-making tools from other areas of medicine. If successful, the project will produce practical recommendations that NHS clinicians can implement immediately—helping young patients and their families make better-informed choices about life-altering facial surgery, with fewer regrets and better long-term outcomes.
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Background: Treatment decision-making is complex, particularly when there is clinical heterogeneity, the evidence-base is weak and/or decisions are being made on a child s behalf. These challenges frequently occur in craniofacial care. Craniosynostosis is a rare congenital condition in which one or more sutures fuses too soon, causing the skull to assume an unusual shape. Early surgical intervention is followed by further surgeries in adolescence and early adulthood to improve facial appearance and function. Yet, young people and their caregivers may not fully understand the implications of their treatment decisions and/or may hold unrealistic expectations about what surgery can achieve. Difficulties adjusting to a changed appearance, decisional regret and traumatic stress have been documented. A shared decision-making (SDM) approach can increase satisfaction with surgical outcomes, while supporting young people to develop coping skills. However, variations in SDM implementation have been observed and national guidelines are not always adhered to. Research Questions: This research will address 3 key questions: 1) How are SDM principles enacted in current craniofacial practice? 2) What are the challenges, barriers, and opportunities to effective SDM implementation? and 3) What resources would enhance SDM for complex elective surgeries? Methods: Eligible participants (10 young people, 10 caregivers) will be recruited through the NHS Oxford Craniofacial Unit. Clinic appointment(s) in which elective surgery is discussed will be audio-recorded. Participants will take part in an online interview before (T1) and after (T2) this appointment(s) to examine their pre- and post-reflections. Clinic recordings will be subjected to Conversation Analysis and interviews analysed using Reflexive Thematic Analysis. These findings will inform interviews with involved multidisciplinary health professionals (up to ~6) to assess their reflections of the decision-making process, and analysed using Content Analysis. Data will be triangulated and synthesised using an iterative mixed methods process. Finally, a narrative review will identify existing SDM tools in the wider health field. These tools will be assessed for use in craniofacial care based on our interviews and observational findings. PPI contributors and NHS staff will meet with the research team monthly to support project progress, interpret preliminary findings and set recommendations. The work will be delivered within a two-year period (July 2025-June 2027). Dissemination and Impact: Dissemination will include a written report and reflective discussion with the Oxford Craniofacial Unit. Four academic papers and two conference presentations will ensure the findings are shared with other national and international clinicians and researchers. A lay summary and brief video outlining the findings will be aimed at participants and the wider community. The comprehensive findings will offer recommendations that NHS health professionals can implement immediately to improve SDM within craniofacial care and related settings. The results will inform a follow-on NIHR bid in late 2027. Depending on the findings of the current study, this may include a trial of a decision-making tool and/or the development of resources to facilitate SDM. The ongoing involvement of multidisciplinary health professionals and PPI contributors will ensure the relevance and accessibility of the research and provide a direct pathway to clinical impact.
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