• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

相似文献

1
Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis.停下来倾听:运用定性研究方法为患有神经纤维瘤病的成年人打造一个网络平台。
J Patient Exp. 2021 Nov 26;8:23743735211049644. doi: 10.1177/23743735211049644. eCollection 2021.
2
Adaptation of a Live Video Mind-Body Program to a Web-Based Platform for English-Speaking Adults With Neurofibromatosis: Protocol for the NF-Web Study.将一个实时视频身心项目改编为基于网络的平台,供患有神经纤维瘤病的英语成年使用者使用:NF-网络研究方案。
JMIR Res Protoc. 2021 Jun 10;10(6):e27526. doi: 10.2196/27526.
3
Mind-Body Treatment for International English-Speaking Adults With Neurofibromatosis via Live Videoconferencing: Protocol for a Single-Blind Randomized Controlled Trial.通过实时视频会议对国际成年英语患者进行神经纤维瘤病身心治疗:单盲随机对照试验方案
JMIR Res Protoc. 2018 Oct 23;7(10):e11008. doi: 10.2196/11008.
4
The impact of a mind-body program on multiple dimensions of resiliency among geographically diverse patients with neurofibromatosis.身心干预计划对具有地理差异的神经纤维瘤病患者的多个韧性维度的影响。
J Neurooncol. 2018 Apr;137(2):321-329. doi: 10.1007/s11060-017-2720-5. Epub 2017 Dec 23.
5
Early feasibility testing of a web-based mind-body resiliency program for adults with neurofibromatosis: The NF-Web study.针对患有神经纤维瘤病的成年人的基于网络的身心恢复力计划的早期可行性测试:NF-Web研究。
PEC Innov. 2022 Aug 20;1:100076. doi: 10.1016/j.pecinn.2022.100076. eCollection 2022 Dec.
6
Effect of Mind-Body Skills Training on Quality of Life for Geographically Diverse Adults With Neurofibromatosis: A Fully Remote Randomized Clinical Trial.身心技能训练对地理分布广泛的神经纤维瘤病成人生活质量的影响:一项完全远程的随机临床试验。
JAMA Netw Open. 2023 Jun 1;6(6):e2320599. doi: 10.1001/jamanetworkopen.2023.20599.
7
Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT.通过视频会议对神经纤维瘤病患者进行身心治疗:一项随机对照试验。
Neurology. 2016 Aug 23;87(8):806-14. doi: 10.1212/WNL.0000000000003005. Epub 2016 Jul 22.
8
Mind-Body Therapy via Videoconferencing in Patients With Neurofibromatosis: Analyses of 1-Year Follow-up.通过视频会议对神经纤维瘤病患者进行身心治疗:1 年随访分析。
Ann Behav Med. 2021 Feb 12;55(1):77-81. doi: 10.1093/abm/kaaa030.
9
The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study.1型神经纤维瘤病、2型神经纤维瘤病和神经鞘瘤病患者的放松反应弹性计划(3RP):一项试点研究的结果。
J Neurooncol. 2014 Oct;120(1):103-9. doi: 10.1007/s11060-014-1522-2. Epub 2014 Jul 15.
10
The impact of a virtual mind-body program on resilience factors among international English-speaking adults with neurofibromatoses: secondary analysis of a randomized clinical trial.虚拟身心项目对讲英语的国际神经纤维瘤病成年人的韧性因素的影响:一项随机临床试验的二次分析。
J Neurooncol. 2023 Jul;163(3):707-716. doi: 10.1007/s11060-023-04389-1. Epub 2023 Jul 13.

引用本文的文献

1
Resiliency outcomes after participation in an asynchronous web-based platform for adults with neurofibromatosis: The NF-Web study.神经纤维瘤病成人参与基于网络的异步平台后的恢复力结果:NF-Web 研究。
PLoS One. 2023 Dec 21;18(12):e0295546. doi: 10.1371/journal.pone.0295546. eCollection 2023.
2
Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.神经纤维瘤病患者对心理社会临床试验设计的看法:一项匿名在线调查的结果。
Clin Trials. 2024 Feb;21(1):73-84. doi: 10.1177/17407745231209224. Epub 2023 Nov 14.
3
Early feasibility testing of a web-based mind-body resiliency program for adults with neurofibromatosis: The NF-Web study.针对患有神经纤维瘤病的成年人的基于网络的身心恢复力计划的早期可行性测试:NF-Web研究。
PEC Innov. 2022 Aug 20;1:100076. doi: 10.1016/j.pecinn.2022.100076. eCollection 2022 Dec.

本文引用的文献

1
Virtual mind-body treatment for adolescents with neurofibromatosis: Study protocol for a single-blind randomized controlled trial.虚拟身心治疗对青少年神经纤维瘤病的疗效:一项单盲随机对照试验的研究方案。
Contemp Clin Trials. 2020 Aug;95:106078. doi: 10.1016/j.cct.2020.106078. Epub 2020 Jul 4.
2
Virtual mind-body treatment for geographically diverse youth with neurofibromatosis: A pilot randomized controlled trial.虚拟现实身心治疗对神经纤维瘤病的地理分布差异青少年的影响:一项随机对照试验的初步研究
Gen Hosp Psychiatry. 2020 Jan-Feb;62:72-78. doi: 10.1016/j.genhosppsych.2019.12.001. Epub 2019 Dec 6.
3
First report of quality of life in adults with neurofibromatosis 2 who are deafened or have significant hearing loss: results of a live-video randomized control trial.首例 NF2 成年聋人或中重度听力损失患者生活质量报告:一项现场视频随机对照试验结果。
J Neurooncol. 2019 Jul;143(3):505-513. doi: 10.1007/s11060-019-03182-3. Epub 2019 May 2.
4
Mind-Body Treatment for International English-Speaking Adults With Neurofibromatosis via Live Videoconferencing: Protocol for a Single-Blind Randomized Controlled Trial.通过实时视频会议对国际成年英语患者进行神经纤维瘤病身心治疗:单盲随机对照试验方案
JMIR Res Protoc. 2018 Oct 23;7(10):e11008. doi: 10.2196/11008.
5
Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT.通过视频会议对神经纤维瘤病患者进行身心治疗:一项随机对照试验。
Neurology. 2016 Aug 23;87(8):806-14. doi: 10.1212/WNL.0000000000003005. Epub 2016 Jul 22.
6
The Role of Appearance in Adolescents' Experiences of Neurofibromatosis Type 1: A Survey of Young People and Parents.外貌在青少年1型神经纤维瘤病经历中的作用:一项针对年轻人及其父母的调查
J Genet Couns. 2016 Oct;25(5):1054-62. doi: 10.1007/s10897-016-9944-y. Epub 2016 Mar 22.
7
The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study.1型神经纤维瘤病、2型神经纤维瘤病和神经鞘瘤病患者的放松反应弹性计划(3RP):一项试点研究的结果。
J Neurooncol. 2014 Oct;120(1):103-9. doi: 10.1007/s11060-014-1522-2. Epub 2014 Jul 15.
8
Using the framework method for the analysis of qualitative data in multi-disciplinary health research.运用多学科健康研究中定性数据分析的框架方法。
BMC Med Res Methodol. 2013 Sep 18;13:117. doi: 10.1186/1471-2288-13-117.
9
Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature.神经纤维瘤病 1 型、神经纤维瘤病 2 型和施万细胞瘤成年患者的生活质量:文献系统评价。
J Neurooncol. 2013 Sep;114(3):257-62. doi: 10.1007/s11060-013-1195-2. Epub 2013 Jul 2.
10
The impact of web-based approaches on psychosocial health in chronic physical and mental health conditions.基于网络的方法对慢性躯体和精神健康状况的心理社会健康的影响。
Health Educ Res. 2013 Jun;28(3):450-71. doi: 10.1093/her/cyt053.

停下来倾听:运用定性研究方法为患有神经纤维瘤病的成年人打造一个网络平台。

Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis.

作者信息

Lester Ethan G, Popok Paula J, Grunberg Victoria A, Baez Alejandro, Herrawi Farahdeba, Vranceanu Ana-Maria

机构信息

Integrated Brain Health Clinical and Research Program, Massachusetts General Hospital, Boston, MA, USA.

Harvard Medical School, Boston, MA, USA.

出版信息

J Patient Exp. 2021 Nov 26;8:23743735211049644. doi: 10.1177/23743735211049644. eCollection 2021.

DOI:10.1177/23743735211049644
PMID:34869834
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8640297/
Abstract

: Psychosocial care for people with neurofibromatosis (NF) is challenging to access. Therefore, we sought to develop a self-guided web-based treatment platform for people with NF based on the live video relaxation response resiliency program for NF (3RP-NF). Here we report on qualitative interviews with adult patients who participated in the 3RP-NF to: (a) understand participant perceptions of the 3RP-NF program and (b) gather feedback for a self-guided web-based treatment platform (i.e., ). : We conducted individual semistructured interviews ( = 23; videoconferencing). We utilized both the Framework method and a hybrid deductive and inductive approach to analyze qualitative data. : We examined findings within the following themes for both 3RP-NF and NF-Web: (a) general attitudes, (b) barriers and facilitators, and (c) program-specific factors. Participants endorsed positive attitudes towards the 3RP-NF and NF-Web and described unique barriers and facilitators to each and provided suggestions regarding technology, NF-specific needs, and ways to promote social support virtually. : This study highlights the importance of gathering participant feedback when designing novel, illness-specific interventions. In future studies, we aim to provide people with NF effective and efficient access to psychosocial support that matches their needs and life context. Results are informing NF-Web development.

摘要

为神经纤维瘤病(NF)患者提供心理社会护理很难实现。因此,我们试图基于针对NF的实时视频放松反应复原力计划(3RP-NF),为NF患者开发一个基于网络的自助治疗平台。在此,我们报告对参与3RP-NF的成年患者进行的定性访谈结果,目的是:(a)了解参与者对3RP-NF计划的看法,以及(b)收集对基于网络的自助治疗平台(即 )的反馈。我们进行了个人半结构化访谈(n = 23;通过视频会议)。我们采用框架法以及演绎与归纳相结合的方法来分析定性数据。我们在以下主题中研究了3RP-NF和NF-Web的结果:(a)总体态度,(b)障碍与促进因素,以及(c)特定于计划的因素。参与者对3RP-NF和NF-Web持积极态度,描述了两者各自独特的障碍与促进因素,并就技术、NF特定需求以及虚拟促进社会支持的方式提出了建议。本研究强调了在设计新颖的、针对特定疾病的干预措施时收集参与者反馈的重要性。在未来的研究中,我们旨在为NF患者提供有效且高效的心理社会支持,以满足他们的需求和生活背景。研究结果为NF-Web的开发提供了参考。