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

Introduction : 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 qualitativ...

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Autores principales:	Ethan G. Lester PhD, Paula J. Popok BA, Victoria A. Grunberg MS, Alejandro Baez, Farahdeba Herrawi MA, Ana-Maria Vranceanu PhD
Formato:	article
Lenguaje:	EN
Publicado:	SAGE Publishing 2021
Materias:	Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/308dd549c76c44bfb002ce3ddc30cdd3
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spelling	oai:doaj.org-article:308dd549c76c44bfb002ce3ddc30cdd32021-12-01T23:05:25ZStopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis2374-374310.1177/23743735211049644https://doaj.org/article/308dd549c76c44bfb002ce3ddc30cdd32021-11-01T00:00:00Zhttps://doi.org/10.1177/23743735211049644https://doaj.org/toc/2374-3743Introduction : 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., NF-Web ). Methods : We conducted individual semistructured interviews ( N = 23; videoconferencing). We utilized both the Framework method and a hybrid deductive and inductive approach to analyze qualitative data. Results : 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. Conclusions : 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.Ethan G. Lester PhDPaula J. Popok BAVictoria A. Grunberg MSAlejandro BaezFarahdeba Herrawi MAAna-Maria Vranceanu PhDSAGE PublishingarticleMedicine (General)R5-920ENJournal of Patient Experience, Vol 8 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine (General) R5-920
spellingShingle	Medicine (General) R5-920 Ethan G. Lester PhD Paula J. Popok BA Victoria A. Grunberg MS Alejandro Baez Farahdeba Herrawi MA Ana-Maria Vranceanu PhD Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis
description	Introduction : 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., NF-Web ). Methods : We conducted individual semistructured interviews ( N = 23; videoconferencing). We utilized both the Framework method and a hybrid deductive and inductive approach to analyze qualitative data. Results : 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. Conclusions : 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.
format	article
author	Ethan G. Lester PhD Paula J. Popok BA Victoria A. Grunberg MS Alejandro Baez Farahdeba Herrawi MA Ana-Maria Vranceanu PhD
author_facet	Ethan G. Lester PhD Paula J. Popok BA Victoria A. Grunberg MS Alejandro Baez Farahdeba Herrawi MA Ana-Maria Vranceanu PhD
author_sort	Ethan G. Lester PhD
title	Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis
title_short	Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis
title_full	Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis
title_fullStr	Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis
title_full_unstemmed	Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis
title_sort	stopping to listen: using qualitative methods to inform a web-based platform for adults with neurofibromatosis
publisher	SAGE Publishing
publishDate	2021
url	https://doaj.org/article/308dd549c76c44bfb002ce3ddc30cdd3
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Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis

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