Bhatt Neel S, Shipman Kelly J, Rosenberg Abby R, Jenssen Kari M, Ballard Sheri A, Baker Kevin Scott, Barton Krysta S
Clinical Research Division, Fred Hutchinson Cancer Center, Seattle, Washington, USA.
Department of Pediatrics, Division of Hematology/Oncology and Bone Marrow Transplant, University of Washington School of Medicine, Seattle, Washington, USA.
Pediatr Blood Cancer. 2023 Jun 21:e30510. doi: 10.1002/pbc.30510.
Adolescent hematopoietic cell transplant (HCT) recipients remain out of school for a prolonged period of time; navigating their return to school after completion of therapy can be challenging for caregivers.
Between August 2020 and June 2021, we conducted individual semi-structured interviews of 19 caregivers of adolescent HCT recipients (10-18 years of age at HCT; 1-7 years post HCT) to understand the challenges faced at the time of their child's return to in-person school post HCT. Conventional content analysis was used to analyze interview transcripts, and thematic analysis was used to identify and organize emerging themes.
Three themes emerged from the caregivers' experiences. First, caregivers reported facing several challenges related to lack of communication between their child's healthcare and school teams, which was burdensome for them. Second, some caregivers reported receiving support from school and healthcare professionals, as well as their child's peers, which helped reduce the burden of return to school. Caregivers also reported providing motivational, emotional, and spiritual support to patients. Lastly, caregivers made several recommendations regarding the need for better communication between family, healthcare professionals, and school professionals and availability of supportive care such as mental health counseling and neuropsychological testing. Notably, the need for a return-to-school navigator emerged as a key finding from our analysis.
Caregivers of adolescent HCT recipients face several challenges supporting their children's return to school post HCT, which are related to lack of communication between patients' healthcare and school teams. While some reported receiving support from school and healthcare professionals and their child's peers, the need to coordinate the return-to-school process was burdensome for several caregivers. Additional work is needed to optimize support for HCT recipients and their caregivers during their return-to-school process to minimize burden. Our study findings have the potential to serve as a framework for developing and testing supportive care interventions to improve the return-to-school experience of HCT survivors and ultimately their quality of life.
青少年造血细胞移植（HCT）受者长时间无法上学；治疗结束后，照料者要帮助他们重返校园颇具挑战性。
在2020年8月至2021年6月期间，我们对19名青少年HCT受者的照料者（HCT时年龄为10 - 18岁；HCT后1 - 7年）进行了个体半结构化访谈，以了解他们的孩子HCT后重返面对面授课学校时所面临的挑战。采用传统内容分析法分析访谈记录，并运用主题分析法识别和组织新出现的主题。
照料者的经历呈现出三个主题。首先，照料者报告称，孩子的医疗团队与学校团队之间缺乏沟通，给他们带来了诸多挑战。其次，一些照料者表示得到了学校、医疗专业人员以及孩子同伴的支持，这有助于减轻重返校园的负担。照料者还报告为患者提供了激励、情感和精神支持。最后，照料者就家庭、医疗专业人员和学校专业人员之间加强沟通以及提供心理健康咨询和神经心理测试等支持性护理提出了多项建议。值得注意的是，我们的分析得出一个关键发现，即需要有一名重返校园引导员。
青少年HCT受者的照料者在支持孩子HCT后重返校园时面临诸多挑战，这些挑战与患者的医疗团队和学校团队之间缺乏沟通有关。虽然一些人报告得到了学校、医疗专业人员和孩子同伴的支持，但协调重返校园的过程对一些照料者来说仍是负担。在HCT受者及其照料者重返校园的过程中，需要开展更多工作来优化支持措施，以减轻负担。我们的研究结果有可能成为一个框架，用于开发和测试支持性护理干预措施以改善HCT幸存者的重返校园体验，并最终提高他们的生活质量。
