Parental home-based pulse oximetry monitoring for adults with intellectual disabilities at risk of serious respiratory problems including COVID-19: a brief report.

BACKGROUND: People with intellectual disabilities (ID) are at high risk of developing respiratory health issues. The COVID-19 pandemic has compounded this, with serious consequences, and for some, death. Despite home-based oxygen saturation monitoring being recommended for people with ID, there is a stark lack of evidence in the literature on its feasibility. METHOD: We conducted 3-day baseline home-based oxygen saturation monitoring, using pulse oximeters, with eight parents of nine adults with ID in Scotland. Two eligible parents also completed a further 2 weeks of monitoring, and returned an evaluation questionnaire on its feasibility. RESULTS: Baseline mean readings for eight adults with ID were within the normal range (%Sp02  ≥ 95), and for another one 94%. Fluctuations over the 3-day assessment period were experienced by six of these individuals. However, these variations were within limits which are not dangerous (lowest reading 92%), implying that parental home-based pulse oximetry monitoring is likely to be safe for adults with ID. The two parents who completed the evaluation found home-based pulse oximetry monitoring to be easy/very easy to do, and effective/very effective. CONCLUSIONS: This is the first research study, albeit with a very small sample, to report on the potential feasibility of parental home-based pulse oximetry monitoring for adults with ID. Home-based pulse oximetry monitoring appears to be safe in adults with ID at risk of developing serious respiratory problems, and not difficult for their parents to do. There is an urgent need to replicate this work, using a larger sample, to promote home-based respiratory health monitoring more widely for people with ID.

EXPERIENCES OF VIRTUAL RESEARCH INVOLVEMENT ACTIVITIES: FROM THE PERSPECTIVES OF YOUNG PEOPLE AND RESEARCHERS

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.

Experiences of virtual research involvement activities: from the perspectives of young people and researchers

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.