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首页> 美国卫生研究院文献>Children >A Multi-Modal Family Peer Support-Based Program to Improve Quality of Life among Pediatric Brain Tumor Patients: A Mixed-Methods Pilot Study
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A Multi-Modal Family Peer Support-Based Program to Improve Quality of Life among Pediatric Brain Tumor Patients: A Mixed-Methods Pilot Study

机译：一个基于多模式家庭同伴支持的计划以改善小儿脑肿瘤患者的生活质量：一项混合方法先行研究

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Background: Pediatric brain tumor (PBT) survivors and their families are at risk for diminished psychosocial and quality of life outcomes. Community-based programs that leverage peer support in the context of integrative modalities such as traditional Chinese medicine (TCM) represent a promising avenue for meeting the multidimensional needs of survivors and their families. Methods: Parents and children were enrolled in a 12-week program that included weekly group TCM, a moderated private Facebook support group designed through social support and modeling theory, and weekly parent-only health behavior education and yoga. Process measures and quantitative and qualitative survey data was collected to gauge participant adherence, acceptability, and satisfaction, as well as exploratory outcomes. Results: Eleven parents completed surveys at all time points. Six of nine families attended at least 80% of the group TCM sessions, and eight of nine families interacted in the Facebook support group at least five days a week. Parents reported high levels of satisfaction and perceived benefits for the program. Baseline emotional distress, health behaviors, and QoL measurements improved during the three-month intervention. Qualitative data indicated parents perceived both in-person and the Facebook group peer support contributed to the benefits of the program. Conclusion: This feasibility study demonstrated that a multimodal peer support-based intervention that included in-person and online group interaction is feasible and acceptable to parents of pediatric brain tumor patients. Further research on interventions for caregivers that include in-person and online group-based peer support is warranted, with the goal of exploring similar outcomes in other childhood cancer diagnoses.
机译：背景：小儿脑瘤（PBT）幸存者及其家人面临着社会心理和生活质量下降的风险。在诸如中医（TCM）等综合模式下利用同伴支持的社区计划，是满足幸存者及其家人多方面需求的有前途的途径。方法：父母和孩子参加了一个为期12周的计划，其中包括每周TCM组，通过社交支持和建模理论设计的温和的私人Facebook支持组，以及每周仅限父母的健康行为教育和瑜伽。收集了过程度量以及定量和定性的调查数据，以评估参与者的依从性，可接受性和满意度以及探索性成果。结果：11个父母在所有时间点都完成了调查。 9个家庭中的6个参加了至少80％的TCM小组会议，9个家庭中的8个参加了Facebook支持小组的互动，每周至少五天。家长报告说该计划的满意度很高，并带来了可观的收益。在三个月的干预期间，基线情绪困扰，健康行为和QoL指标得到改善。定性数据表明，父母认为亲身和Facebook团体的同伴支持都为该计划带来了好处。结论：这项可行性研究表明，包括亲身和在线小组互动在内的多模式基于同伴支持的干预措施是可行的，并且对于小儿脑肿瘤患者的父母来说是可以接受的。有必要对护理人员的干预措施进行进一步研究，包括面对面的和在线的基于团体的同伴支持，目的是探索在其他儿童期癌症诊断中的类似结果。

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