Supplementary Material for: The Caregiver Burden of Helmet Therapy following Endoscopic Strip Craniectomy: A phenomenological qualitative study.

Introduction: This cohort study aims to elucidate the caregiver burden of Helmet Therapy (HT) following Endoscopic Strip Craniectomy (ESC) to treat craniosynostosis in an effort to inform clinicians and future caregivers navigating this therapeutic option. Methods: Fourteen caregivers of children with positional plagiocephaly (6) and craniosynostosis treated by ESC (8) undergoing HT at a single center were recruited via convenience sampling. Using a phenomenological qualitative approach, semi-structured interviews were conducted to understand the experience of HT for caregivers. Data collection and analysis were iterative and conducted until thematic saturation was reached. Results: Emerging themes revealed five domains of caregiver burden: emotional, cognitive, physical, psychosocial, and financial. No caregiver felt the therapy was too burdensome to complete. Caregivers of both groups also expressed positive aspects of HT related to support from the team, the non-invasive nature of treatment, and the outcomes of therapy. Furthermore, caregivers report overall satisfaction with the process, stating willingness to repeat the treatment with subsequent children if required. Conclusion: HT is associated with five major domains of caregiver burden; however, none of the caregivers regret choosing this treatment option, nor was the burden high enough to encourage treatment cessation. This study will inform future prospective analyses that will quantify real-time caregiver burden throughout HT.