Division of Neurology, Department of Medicine, University of Alberta, 7-123 Clinical Sciences Building, Edmonton, AB, T6G 2B7, Canada.
itracks, Saskatoon, SK, Canada.
BMC Med Res Methodol. 2023 Oct 6;23(1):222. doi: 10.1186/s12874-023-02051-y.
People with amyotrophic lateral sclerosis (ALS) face disability- and travel-related barriers to research participation. We investigate the usefulness and acceptability of asynchronous, online focus groups (AOFGs) for research involving people affected by ALS (patients and family caregivers) and outline lessons learned.
The ALS Talk Project, consisting of seven AOFGs and 100 participants affected by ALS, provided context for this investigation. Hosted on the secure itracks Board™ platform, participants interacted in a threaded web forum structure. Moderators posted weekly discussion questions and facilitated discussion. Data pertaining to methodology, participant interaction and experience, and moderator technique were analyzed using itracks and NVivo 12 analytics (quantitative) and conventional content analysis and the constant-comparative approach (qualitative).
There was active engagement within groups, with post lengths averaging 111.48 words and a complex network of branching interactions between participants. One third of participant responses included individual reflections without further interaction. Participants affirmed their co-group members, offered practical advice, and discussed shared and differing perspectives. Moderators responded to all posts, indicating presence and probing answers. AOFGs facilitated qualitative and quantitative data-gathering and flexible response to unanticipated events. Although total participation fell below 50% after 10-12 weeks, participants valued interacting with peers in an inclusive, confidential forum. Participants used a variety of personal devices, browsers, and operating systems when interacting on the online platform.
This methodological examination of AOFGs for patient-centred investigations involving people affected by ALS demonstrates their usefulness and acceptability, and advances knowledge of online research methodologies. Lessons learned include: early identification of research goals and participant needs is critical to selecting an AOFG platform; although duration longer than 10-12 weeks may be burdensome in this population, participants were positive about AOFGs; AOFGs offer real world flexibility enabling response to research challenges and opportunities; and, AOGFs can effectively foster safe spaces for sharing personal perspectives and discussing sensitive topics. With moderators playing an important role in fostering engagement, AOFGs facilitated rich data gathering and promoted reciprocity by fostering the exchange of ideas and interaction between peers. Findings may have implications for research involving other neurologically impaired and/or medically vulnerable populations.
肌萎缩侧索硬化症（ALS）患者在参与研究时面临残疾和旅行相关的障碍。我们调查了异步在线焦点小组（AOFG）在涉及 ALS 患者（患者和家庭照顾者）的研究中的有用性和可接受性，并概述了经验教训。
ALS Talk 项目由七个 AOFG 和 100 名受 ALS 影响的参与者组成，为本次调查提供了背景。参与者在安全的 itracks Board™平台上进行互动，以线程式网络论坛结构进行交互。主持人每周发布讨论问题，并促进讨论。使用 itracks 和 NVivo 12 分析（定量）和常规内容分析以及恒定比较方法（定性）分析与方法、参与者互动和体验以及主持人技术相关的数据。
组内互动活跃，帖子平均长度为 111.48 个单词，参与者之间存在复杂的分支交互网络。三分之一的参与者回复包括没有进一步互动的个人反思。参与者肯定了他们的同组成员，提供了实用的建议，并讨论了共同和不同的观点。主持人回复了所有帖子，表明存在并探究答案。AOFG 促进了定性和定量数据收集，并灵活应对意外事件。尽管在 10-12 周后总参与率低于 50%，但参与者仍重视在包容和保密的论坛中与同龄人互动。参与者在在线平台上使用各种个人设备、浏览器和操作系统进行交互。
对涉及 ALS 患者的以患者为中心的研究中使用 AOFG 的方法学检查表明其有用性和可接受性，并推进了在线研究方法学的知识。经验教训包括：早期确定研究目标和参与者需求对于选择 AOFG 平台至关重要；尽管在该人群中，10-12 周以上的时间可能会带来负担，但参与者对 AOFG 持积极态度；AOFG 提供了现实世界的灵活性，能够应对研究挑战和机会；并且，AOFG 可以有效地为分享个人观点和讨论敏感话题创造安全空间。主持人在促进参与方面发挥着重要作用，AOFG 促进了丰富的数据收集，并通过促进思想交流和同侪之间的互动促进了互惠。研究结果可能对涉及其他神经受损和/或医学上脆弱人群的研究具有启示意义。
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