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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.

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。

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本文引用的文献

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Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT.
Neurology. 2016 Aug 23;87(8):806-14. doi: 10.1212/WNL.0000000000003005. Epub 2016 Jul 22.
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