Youth-led development of an animated film to aid recruitment to a national youth advisory group for adolescent and young adult rheumatology

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. Disclosure L.E. Lunt: None. M. Purvis: None. S. Gnanenthiran: None. P. Zing: None. J.E. McDonagh: Consultancies;Consultancy fees from Pfizer (2018) and CSL-Behring (2021).

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. Disclosure L.E. Lunt: None. J. Leslie: None. S. Gnanenthiran: None. M. Purvis: None. T. Kierkegaard Holt: None. J.E. McDonagh: Consultancies;Consultancy fees from Pfizer (2018) and CSL-Behring (2021).

Developmentally appropriate transitional care during the Covid-19 pandemic for young people with juvenile-onset rheumatic and musculoskeletal diseases: the rationale for a position statement.

BACKGROUND: The importance of developmentally appropriate transitional care in young people with juvenile-onset rheumatic and musculoskeletal disease is well recognised. The Paediatric Rheumatology European Society (PReS) / European League Against Rheumatism (EULAR) Taskforce has developed international recommendations and standards for transitional care and a growing evidence base supports the positive benefits of such care. However, there is also evidence that universal implementation has yet to be realised. In 2020, against this background the COVID-19 pandemic arrived with significant impact on all our lives, young and old, patient, public and professional alike. The unfortunate reality of the pandemic with potential for unfavourable outcomes on healthcare provision during transition was acknowledged by the PReS working groups in a position statement to support healthcare professionals, young people and their caregivers. AIM: The aim of this review is to present the literature which provides the rationale for the recommendations in the PReS Position Statement. The following areas are specifically addressed: the prime importance of care coordination; the impact of the pandemic on the various aspects of the transition process; the importance of ensuring continuity of medication supply; the pros and cons of telemedicine with young people; ensuring meaningful involvement of young people in service development and the importance of core adolescent health practices such as routine developmental assessment psychosocial screening and appropriate parental involvement during transitional care.

Young Minds: Mental Health and Transitional Care in Adolescent and Young Adult Rheumatology.

Consideration of the mental health and emotional wellbeing is an important component of health care for all young people, irrespective of setting. Mental health disorders are common during adolescence and young adulthood and young people with rheumatic musculoskeletal diseases (RMD) are not exempt. For such young people, risks of poor outcomes are related to both mental health as well as their RMD. Times of change during adolescence and young adulthood-transitions-are potentially vulnerable life stages for young people with RMD and warrant specific attention in health care provision. Such transitions include those occurring at puberty, during education, training, and employment, socially with moves away from the parental home, as well as from child to adult-centered health services. There is great potential for rheumatology professionals to support young people with RMD at these transitions in view of their frequent encounters and ongoing therapeutic relationships. In this review, we aim to assess the impact of mental health on RMD during adolescence and young adulthood with particular reference to transitional care provision and how rheumatology professionals can be involved in addressing mental health issues during this time of change.

Returning to school: children and young people living with chronic illness

PurposeThe reopening of schools during the SARS-CoV-2 pandemic is full of challenges for families, which are heightened for children and young people (CYP) who live with chronic illnesses. This paper aims to offer a framework to support the successful return of CYP with chronic illnesses to school using appropriate intersectoral strategies.Design/methodology/approachThis paper draws on research data on the impact of school closure on CYP with chronic illness and emerging findings of global research about their lives during the pandemic. It is also informed by the perspectives of practitioners in the field, who are working with these CYP and their families.FindingsA framework based on three different strategies for a successful return is established. A small but significant group of CYP living with conditions such as cancer will not yet return and will need ongoing home education provision. CYP with well-controlled symptoms of chronic illness will benefit from school routines and socialization with peers. CYP with poorly controlled illness will need close supervision and individual plans. All groups will benefit from better intersectoral working across education and health and from recent rapid developments in hybrid learning models and telemedicine.Originality/valueThis viewpoint highlights the need for a strategic approach to the return to school of CYP with chronic illness that goes well beyond classifying them as vulnerable students. This group of CYP is already at risk of lower educational attainment, so widening inequalities must be halted. This paper provides a framework for anchoring local intersectoral approaches adapted to the different situations of CYP.