ABSTRACT
Background/Aims Your Rheum is a UK young person's research advisory group, for those aged 11-24 years and diagnosed with a rheumatic condition. Prior to the COVID-19 pandemic, Your Rheum engaged with its members and researchers at face-to-face meetings, offering online activities to enable broader involvement. Aim(s) to explore the advantages and disadvantages of conducting research involvement activities virtually, from the perspectives of both young people and researchers. Methods Online surveys were sent to Your Rheum members and researchers, who have engaged with the Group virtually over the past 12 months. 8/ 16 young people responded and 3/6 researchers. Results Many young people commented on the convenience of meetings taking place virtually, allowing more young people to be involved regardless of location. Some highlighted that face-to-face meetings were often too far to travel to. For example. as one young person highlighted 'no travel is required so it is much less of a whole-day commitment, meaning it is much easier and more likely that I will be able to attend.' Similarly, researchers who responded also stated the convenient aspect to conducting virtual activities. Additionally, for some young people, speaking online is easier and more comfortable than face-to-face communication;with some expressing, there is less pressure to contribute to discussions. One researcher noted a positive feature was the ability to switch cameras off, helping younger or quieter members to participate. However, a number of young people felt the opposite was true and have found virtual meetings difficult to contribute to, 'it is more stressful everyone is looking at you and no one else is speaking. The format of having meetings online also makes the whole event feel much more formal which means that it can be quite intimidating to speak.' Difficulty building virtual relationships and connections was a significant disadvantage. This was highlighted by over half of respondents, who reported that it is easier to get to know others in person as you have the opportunity to deviate from the topic being discussed, allowing for natural conversations to occur. As one young person poignantly noted, online meetings 'lacking true human connection'. From a researcher perspective, the subtle insights gained from face-to-face interactions were missing. Conclusion This study has highlighted strengths of conducting research involvement activities virtually. For example, logistics and convenience, and for some young people, the development of personal skills such as speaking to others. However, the formal and rigid nature of virtual meetings makes interacting and connecting with other people difficult. Moving forward, Your Rheum will take a blended approach to activities (frequent virtual meetings, as well as bi-annual face-to-face meetings). When planning virtual meetings, consideration to social interactions and opportunities to get to know one another remains important for young people.
ABSTRACT
Background/Aims Your Rheum is a national youth advisory group for adolescent and young adult rheumatology, to ensure meaningful involvement of young people at all stages of research. It was established in 2016 as a result of nationwide research, which reported that young people with rheumatic conditions wanted to be actively involved and had clear opinions of how they wanted to be involved and the priorities for such research. Young people ageing-out of the group remains challenging in view of the national nature of the group and was further compounded by the impact of the COVID-19 pandemic, which prevented the face-to-face meetings of the group. The aim of this project was to develop a short animation detailing what Your Rheum is about to encourage young people to join. Methods Content for the animation was gathered at a virtual Your Rheum meeting and via an online survey sent to members. A smaller group of members (n=4) then worked with the Your Rheum facilitator and a national animation company, More Than Minutes, to create a script, storyboard, to choose imagery, colour schemes and discuss a voiceover. The animation was subsequently revised in the light of feedback from the young people. Results Key areas of content included: who can get involved in Your Rheum and membership;the different ways the group works with researchers for example group virtual and face-to-face activities, individual online activities;examples of different projects and topics of research discussed;why it is important to involve young people in research;how to contact the Your Rheum team. It was important to ensure the animation imagery was bright, fun and highlighted diversity. Language used in the film had to be clear and simple to understand, to enable young people from the age of 11 years upwards to relate. Subtitles on the video were also an important feature. The animation was successfully launched in September 2021 - [https://youtu.be/ Y8OqmEJZ9Eo] Conclusion It is important to harness the experience and opinions of young people at all stages of research including recruitment strategies and dissemination, as this can result in resources that truly resonant with this age group.
ABSTRACT
Introduction: Your Rheum is a UK young person's research advisory group, for those aged 11-24 years and diagnosed with a rheumatic condition. Prior to the COVID-19 pandemic, Your Rheum mostly engaged with its members and researchers at face-to-face meetings twice a year, offering online activities to potentially enable broader involvement. Objectives: To explore the advantages and disadvantages of conducting research involvement activities virtually, from the perspectives of both young people and researchers. Methods: Online surveys were only sent to Your Rheum members and researchers, who have engaged with the Group virtually over the past 12 months. 8/16 of these young people responded;1 male, 7 female;age range 16-22 years and 3/6 researchers representing different research projects. Results: Many young people commented on the convenience of meetings taking place virtually, allowing more young people to be involved regardless of location. Some highlighted that face-to-face meetings were often too far to travel to and therefore required a significant commitment to attend. For example as one young person highlighted in regards to virtual meetings, no travel is required so it is much less of a whole-day commitment, meaning it is much easier and more likely that I will be able to attend. Similarly, researchers who responded also stated the convenient aspect to conducting virtual activities. Additionally, for some young people, speaking online is easier and more comfortable than face-to-face communication;with some expressing, it is not such an intimidating environment and there is less pressure to contribute to discussions. Using interactive tools on virtual platforms, such as breakout rooms, is another positive aspect of online meetings. One researcher noted a positive feature was the ability to switch cameras off, helping younger or quieter members to participate. However, a number of young people felt the opposite was true and have found virtual meetings difficult to contribute to, it is more stressful as everyone is looking at you and no one else is speaking. The format of having meetings online also makes the whole event feel much more formal which means that it can be quite intimidating to speak. Difficulty building virtual relationships and connections was a significant disadvantage. This was highlighted by over half of respondents, who reported that it is easier to get to know others in person as you have the opportunity to deviate from the topic being discussed, allowing for natural conversations to occur. As one young person poignantly noted, online meetings seem to be lacking true human connection. From a researcher perspective, the subtle insights gained from face-to-face interactions were missing. Conclusion: This study has highlighted strengths of conducting research involvement activities virtually. For example, logistics and convenience, and for some young people, the development of personal skills such as speaking to others and contributing to group discussions. However, the formal and rigid nature of virtual meetings makes interacting and connecting with other young people difficult. Moving forward, a blended approach to Your Rheum activities is proposed ie the inclusion of frequent virtual meetings, as well as regular bi-annual face-to-face meetings (COVID-19 restrictions permitting). However, when planning virtual meetings, consideration to social interactions and opportunities to get to know one another remains important for young people.