Rare diseases are complex and difficult to diagnose, with parents and caregivers often reporting significant delays in receiving a definitive diagnosis. Following diagnosis, parents and caregivers often feel overwhelmed with emotions, including relief, guilt, and shock. The culmination of this emotional burden may lead to a deterioration of psychological health, ultimately reaching a stage where the parents struggle to cope. A systematic literature review was conducted of the articles on this topic by searching the electronic database, PubMed. Further studies were retrieved from a reference listing of relevant articles and consultation with experts in the field. The review was based on the guidance in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol. The initial search identified 1276 articles, of which 37 met the inclusion criteria and were included in this review. The literature revealed key factors that appeared to contribute to psychological stress, including prolonged diagnostic odyssey, poor diagnostic delivery, lack of information and specialist knowledge, and convoluted healthcare systems. This review reinforces the need for psychological support amongst parents and caregivers of children with a rare disease at the time of diagnosis. The results of this literature review will be used to develop a statement of good practice for the support of parents and caregivers when a rare disease diagnosis is given.

Oesophagitis Dissecans in a Child With VomitingOesophagitis dissecans superficialis (ODS), referred to as ''sloughing oesophagitis,'' is a rare finding of unknown aetiology and unclear significance. Some cases have been vomited tubular casts of oesophageal mucosa (1), but often ODS is an unsuspected finding. The endoscopist notices whitish strips of peeling oesophageal mucosa, similar to those seen in eosinophilic oesophagitis. Histology shows intraepithelial splitting of squamous epithelium above the basal layer, typically with no or minimal inflammation (2). Superficial fragments may have fungal or bacterial colonies (2). Multiple small bullae and neutrophil microabscesses involving the middle layers of the epithelium have been described (2). Bullous skin disorders and bisphosphonate therapy are associated with ODS; however, most cases remain unexplained (2-4).We treated a 14-year-old girl with a history of effortless, nonbilious vomiting. There was no abdominal pain, dyspepsia, or weight loss. She had multiple allergies and elevated immunoglobulin E. Investigations, including fluoroscopy, gastric emptying, and magnetic resonance imaging of the brain, were normal. She was not taking any medications. Endoscopic and histological findings were consistent with the diagnosis of ODS. Because to our knowledge, ODS has never been reported in children, the endoscopic appearance (Figs. 1-3) may be different than that classically described in adults.As recommended in the literature, a proton pump inhibitor was given (1,2). The literature indicates good prognosis with complete resolution on follow-up endoscopy (2,5). Our case showed full endoscopic and histological resolution.

Interactive whiteboards (IWBs) can be a great asset to teachers trying to help students visualize what they are trying to teach, especially for supporting instructors and teams of students in class. However, commercial IWBs can be costly and difficult to operate. This paper describes the development of a low-cost IWB using a video game controller and “homebrew” infrared pens, and how its usability and technology acceptance will be tested in the context of sociology courses. We propose that the use of low-cost and highly-usable technologies in sociology courses may enhance student learning outcomes and retention rates as a way to fit the learning needs of students and supporting them in the engagement of critical thinking.

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.