Surgical decision-making regarding hearing and ear reconstruction in craniofacial microsomia: Exploring caregiver narratives

Stock, Nicola M.; Herring, Beth; Magee, Leanne; Johns, Alexis L.; Crerand, Canice E.; Heike, Carrie L.; Schefer, Amy; Drake, Amelia F.; Tumblin, Melissa; Feragen, Kristin Billaud

Abstract

Treatment decision-making is an integral but complex part of healthcare, particularly in the context of craniofacial surgeries. The aim of the current study was to explore caregiver narratives to inform future surgical care delivery and best practice. ‘Life Story’ narrative interviews were conducted with US English- and Spanish-speaking caregivers (n=62) of children aged 3-17 years with craniofacial microsomia (CFM). Extracts relating to treatment decision-making were inductively coded using Reflexive Thematic Analysis. Four themes were identified: 1) ‘Grappling with Difference’ exemplifies how participants dealt with having a child who was different; 2) ‘Seeking Authoritative Guidance’ illustrates how participants proactively pursued information about treatment options over several years; 3) ‘In the Driving Seat’ describes participants’ beliefs about whether and how much to involve their child in treatment decisions; and 4) ‘Post-Treatment Reflections’ depicts participants’ reflections of the decision-making experience. Surgeons and other healthcare providers are encouraged to use neutral and accessible language, to ensure families and children have a thorough understanding of all treatment pathways, and to engage in effective shared decision-making practices. Content predominantly focused on surgeries for ear reconstruction and hearing amplification. Future studies would benefit from examining other treatment decisions that caregivers are required to make.

• Journal Article Type: Article
• Acceptance Date: Jan 17, 2025
• Online Publication Date: Feb 12, 2025
• Deposit Date: Jan 20, 2025
• Publicly Available Date: Mar 13, 2025
• Print ISSN: 1010-5182
• Publisher: Elsevier
• Peer Reviewed: Peer Reviewed
• DOI: https://doi.org/10.1016/j.jcms.2025.01.019
• Keywords: Visible Difference; Craniofacial; Treatment Decision-Making; Surgery
• Public URL: https://uwe-repository.worktribe.com/output/13625741