Objectives Post COVID-19 presentations, including Long COVID in children and young people are new and little is known about the long term prognosis and course of these conditions. The NHS has lagged behind patient groups in the development and publication of resources. The following NHS England tasked project was initiated to produce, high quality, evidence based resources to meet the needs of children and young people and their parents/carers.
Methods Allied Health Professions, Nurses and Psychologists with established track records in providing therapeutic input for similar conditions were drawn together from five London acute hospital trusts. Using two interlocking PDSA (Plan, Do, Study, Act) cycles, we developed a set of six psychoeducational leaflets and used a live group format to pilot content for webinars. Feedback on the leaflets was sought from a PPI group of young people with long COVID, their parents and professionals working with young people with post COVID-19 presentations and related issues. Leaflets were edited by the Evelina London Patient Information Team and evaluated using an online ‘Readability’ tool. Pre and post session measures were gathered for each group session and adaptations made through an iterative approach until all topics were finalised. The leaflets were presented at the NHS England Editorial Board which comprised of professionals and patient representatives.
Results The text of the leaflets was found to be below a reading age of twelve years. Feedback on the leaflets content was overwhelmingly positive and appropriate adaptations were made. All group participants and their parents reported at least one area of significant change in terms of their overall understanding and confidence in managing their post COVID-19 symptoms. Participants requested additional information on how to communicate their needs effectively with schools.
Conclusions The first set of leaflets on Managing Daily Activities, Sleeping Well, Eating Well and Managing Emotions and Feelings have now been included in the new Children and Young People section of the Your Covid Recovery website. Further work is taking place with the Department for Education in order to ensure that advice given regarding school participation is consistent with their policies and guidelines. The live group content is currently with the support of NHSE being transformed into recorded webinars for publication on the above website. As our knowledge about the course of Long COVID, increases we need to ensure that this information continues to be relevant and rooted in the existing evidence base. While the majority of young people with Long COVID identify as White British, we must also ensure that the style and content of both the leaflets and webinars are culturally appropriate, relevant and accessible to all young people.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.