Abstract：
BACKGROUND: This cohort study aimed 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 noninvasive 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.
CONCLUSIONS: 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.
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 noninvasive 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.
CONCLUSIONS: 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.
摘要：
背景：这项队列研究旨在阐明内镜下带状颅骨切除术（ESC）后头盔疗法（HT）的护理负担，以帮助临床医生和未来的护理人员了解这种治疗选择。
方法：通过方便抽样，招募了14名在单中心接受ESC（8）治疗的位置性斜头症（6）和颅骨融合症儿童的看护人。使用现象学的定性方法，我们进行了半结构化访谈,以了解护理人员接受HT的经历.反复进行数据收集和分析，直到达到主题饱和。
结果：新兴主题揭示了照顾者负担的五个领域：情感，认知，物理，社会心理,和财务。没有护理人员觉得治疗过于繁重，无法完成。两组的护理人员也表达了HT的积极方面，与团队的支持有关，治疗的非侵入性，以及治疗的结果。此外，护理人员报告对该过程的总体满意度，如果需要，表示愿意与后续儿童重复治疗。
结论：HT与照顾者负担的五个主要领域有关；然而，没有一个护理人员后悔选择这种治疗方案,负担也不足以鼓励停止治疗。这项研究将为未来的前瞻性分析提供信息，这些分析将量化整个HT期间的实时护理人员负担。
方法：通过方便抽样，招募了14名在单中心接受ESC（8）治疗的位置性斜头症（6）和颅骨融合症儿童的看护人。使用现象学的定性方法，我们进行了半结构化访谈,以了解护理人员接受HT的经历.反复进行数据收集和分析，直到达到主题饱和。
结果：新兴主题揭示了照顾者负担的五个领域：情感，认知，物理，社会心理,和财务。没有护理人员觉得治疗过于繁重，无法完成。两组的护理人员也表达了HT的积极方面，与团队的支持有关，治疗的非侵入性，以及治疗的结果。此外，护理人员报告对该过程的总体满意度，如果需要，表示愿意与后续儿童重复治疗。
结论：HT与照顾者负担的五个主要领域有关；然而，没有一个护理人员后悔选择这种治疗方案,负担也不足以鼓励停止治疗。这项研究将为未来的前瞻性分析提供信息，这些分析将量化整个HT期间的实时护理人员负担。
