Georgia Treneman-Evans

The nature and causes of neuropsychiatric symptoms in children and young people (CYP) with Long Covid are debated in current research. This study explored CYP perceptions of their mental health difficulties in association with Long Covid diagnoses. Nine CYP were interviewed, asking about their experiences of Long Covid and mental health. Data was analysed using Interpretive Phenomenological Analysis. There were two principal findings in this research. (1) Participants related their mental health difficulties to difficulties associated with having Long Covid and wider system pressures. (2) Participants spoke about the impact of stigma in healthcare services delaying access to specialist medical professionals. Findings suggest that healthcare services need to be better informed, and to reduce barriers to access healthcare services. These measures would reduce the pressure on families to fight for services.

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) in children and young people (CYP) is disabling and relatively common (1-2% of children) [1,2], with a significant impact on patients,...

Background: Adolescent sleep duration can substantially impact mood, behavior, and academic attainment. While hundreds of sleep-related apps are available to download, none have been cocreated with adolescents from underserved populations in the United Kingdom. Objective: This study aimed to explore adolescents’ views, expectations, and experiences with a novel app to improve sleep, called Sleep Solved, to understand which features were perceived as positive and helpful, and to identify ways to further enhance its usefulness. Sleep Solved is part of a larger stepped behavior change study and was cocreated with adolescents from underserved groups to make the app accessible and engaging for this population. Methods: A total of 63 participants aged 16‐18 years from across the United Kingdom completed semistructured interviews after trying the app. Interviews were analyzed using inductive thematic analysis, as outlined by Braun and Clarke, with a particular focus on the views of individuals from underserved ethnic and socioeconomic groups. Results: Participants perceived Sleep Solved as a useful tool that provides helpful advice regarding changeable behaviors to improve sleep hygiene. Cocreated features of the app, such as the Sleep Stars gamified rewards system and the easy-read, science-based “sleep hacks,” were viewed positively by participants, who reported that they had a beneficial impact on their sleep and sleep schedule. Praise was given for the app’s ease of use and how the science of sleep was explained at an appropriate level, without being overwhelming. Compared to sleep advice on social media platforms, Sleep Solved was considered more reliable and trustworthy. Participants described better sleep hygiene, such as a regular sleep routine and a longer sleep duration, and increased feelings of improved mood and energy. Conclusions: This study found that a cocreated sleep app, designed with input from adolescents in underserved UK populations, was perceived as accessible, reliable, and effective in supporting positive sleep behavior change. Although sleep duration was not objectively tested, participants, particularly those from low socioeconomic status backgrounds and diverse ethnicities, reported improved sleep routines and mood, highlighting the potential of co-designed digital tools to engage and benefit adolescent users.

BACKGROUND Most adolescent mental health issues remain undetected and untreated, with insomnia a potent risk factor for psychopathology and suicidality. Digital single-session interventions (SSIs), targeting sleep, offer scalable, accessible opportunities for preventive solutions that may overcome barriers such as stigma and low engagement, particularly among underserved groups. OBJECTIVE This study evaluated the feasibility of a mobile-based sleep intervention delivered through educational settings. METHODS This study employed a non-randomised, mixed-methods, longitudinal design to evaluate the feasibility of a multi-level intervention in young people aged 14-18 years. 1,046 participants were recruited from schools and colleges across England. Participants accessed a stepped-care mobile intervention and completed self-report measures at baseline and 6-week follow-up. Outcomes included feasibility (recruitment, retention), engagement (usage analytics, completion rates), and changes in insomnia (Insomnia Severity Index) and mental health symptoms (Revised Children’s Anxiety and Depression Scale). Logistic regression models examined predictors of attrition and engagement RESULTS 1048 participants completed baseline assessments and 656 (62.6%) completed 6-week follow-up. Among participants with linked usage data (n=603), 57.7% completed the core intervention content. Attrition was higher among males and lower among participants from more deprived areas. Significant improvements were observed in insomnia symptoms (Cohen d=0.29, p<.001), as well as anxiety and depression (d=0.11-0.19, all p<.01). Among participants with baseline insomnia symptoms, 26.9% achieved remission at follow-up. CONCLUSIONS The intervention was well-received across diverse groups, supporting the acceptability and scalability of brief, school-based digital interventions to reduce sleep-related mental health disparities CLINICALTRIAL Not applicable.

Background: Social media groups (SMGs) enable individuals with rare diseases to connect with one another and access instant support and advice. Accelerated diagnoses of genetic neurodevelopmental disorders (NDDs) over the last decade have driven rapid expansion of gene-specific SMG membership. Limited literature regarding parental use of SMGs in the context of managing their child’s NDD exists. Objective: The objective of our study was to determine and describe how parents use social media and the internet in the context of their child’s NDD. Methods: We undertook a mixed methods study of 477 parents within a cohort of children with NDDs (Genetic Rare Disease: Observational Cohort Study; GenROC). A total of 359 parents provided quantifiable survey responses regarding their use of social media. We also interviewed 17 parents to understand how they use SMGs and their views on the data held within these groups. Results: Our survey found 359/475 (75.7%) of parents use SMGs related to their child’s genetic disorder, and of these, 98.5% (354/359) are on Facebook. Most SMGs are closed, international, have more than 200 members, are specific to the NDD, and are associated with a corresponding charity or foundation. In total, 191/312 (61.2%) parents could not recall what they had consented to when joining the group with respect to the use of their posted data. Most parents trust the data (Likert scale 1‐10; mean 7.03, SD 1.98) that are shared but acknowledged the anecdotal nature of them. Parents found the most valuable element of the SMG to be shared lived experience with other families. Interview data from 17 parents were coded and analyzed thematically. A total of 4 main themes were identified: (1) SMGs for support and shared lived experience; (2) possible harms from participation in SMGs; (3) SMG composition, demographics, and dynamics; and (4) usefulness and use of data shared within the groups. Conclusions: This mixed methods study shows the evolving landscape of SMG use in neurodevelopmental disorders, highlights its benefits and downsides, and is widely applicable to all parent SMGs for specific niche medical conditions. Using the strength of these groups in a more collaborative approach in the future could prove useful to clinicians, families, and researchers alike.

BACKGROUND Adolescent sleep duration can substantially impact mood, behavior, and academic attainment. While hundreds of sleep-related apps are available to download, none have been co-created with adolescents from underserved populations in the UK. OBJECTIVE The aim of this study was to explore adolescents' views, expectations and experiences with a novel app to improve sleep, called Sleep Solved, to understand which features were perceived as positive and helpful, and to identify ways to further enhance its usefulness. Sleep Solved is part of a larger stepped behavior change study and was co-created with adolescents from underserved groups to make the app accessible and engaging for this population. METHODS Sixty-three participants aged 16-18 from across the UK completed semi-structured interviews after trying the app. Interviews were analyzed using inductive thematic analysis, with a particular focus on the views of individuals from underserved ethnic and socioeconomic groups. RESULTS Participants perceived Sleep Solved as a useful tool that provides helpful advice regarding changeable behaviors to improve sleep hygiene. Co-created features of the app, such as the Sleep Stars gamified rewards system and the easy-read, science-based ‘sleep hacks’, were viewed positively by participants, who reported that it had a beneficial impact on their sleep and sleep schedule. Praise was given for the app’s ease of use, and how the science of sleep was explained at an appropriate level, without being overwhelming. Compared to sleep advice on social media platforms, Sleep Solved was considered more reliable and trustworthy. Participants described better sleep hygiene, such as a regular sleep routine and a longer sleep duration, and increased feelings of improved mood and energy. CONCLUSIONS This study found that a co-created sleep app, designed with input from adolescents in underserved UK populations, was perceived as accessible, reliable, and effective in supporting positive sleep behavior change. Participants, particularly those from low socioeconomic status (SES) backgrounds and diverse ethnicities, reported improved sleep routines and mood, highlighting the potential of co-designed digital tools to engage and benefit adolescent users.

Background: Poor sleep is a common problem in adolescents aged 14 to 18 years. Difficulties with sleep have been found to have a bidirectional link to mental health problems. Objective: This new research sought to involve young people in the co-creation of a new app, particularly those from underserved communities. The Sleep Solved app uses science-based advice to improve sleep-related behaviors and well-being. The app was developed using the person-based approach, underpinned by the social cognitive theory and the social-ecological model of sleep health. Methods: Young people (aged 14-18 y) were recruited from across the United Kingdom to contribute to patient and public involvement (PPI) activities. In partnership with our peer researcher (MHJ), we used a multitude of methods to engage with PPI contributors, including web-based workshops, surveys, think-aloud interviews, focus groups, and app beta testing. Results: A total of 85 young people provided PPI feedback: 54 (64%) young women, 27 (32%) young men, 2 (2%) genderfluid people, 1 (1%) nonbinary person, and 1 (1%) who reported “prefer not to say.” Their levels of deprivation ranged from among the 40% most deprived to the 20% least deprived areas. Most had self-identified sleep problems, ranging from 2 to 3 times per week to >4 times per week. Attitudes toward the app were positive, with praise for its usability and use of science-based yet accessible information. Think-aloud interviews and a focus group identified a range of elements that may influence the use of the app, including the need to pay attention to language choices and readability. User experiences in the form of narrated audio clips were used to normalize sleep problems and provide examples of how the app had helped these users. Conclusions: Young people were interested in using an app to better support their sleep and mental health. The app was co-created with strong links to theory- and evidence-based sleep hygiene behaviors. Future work to establish the effectiveness of the intervention, perhaps in a randomized controlled trial, would provide support for potential UK-wide rollout.

Design: Parallel-group randomised controlled trial. Methods: Participants: Adolescents aged 11–17 years, diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome and with no local specialist treatment centre, were referred to a specialist service in South West England. Interventions: Fatigue In Teenagers on the interNET in the National Health Service is a web-based myalgic encephalomyelitis/chronic fatigue syndrome-focused cognitive–behavioural therapy programme for adolescents, supported by individualised written, asynchronous electronic consultations with a clinical psychologist/cognitive–behavioural therapy practitioner. The comparator was videocall-delivered activity management with a myalgic encephalomyelitis/chronic fatigue syndrome clinician. Both treatments were intended to last 6 months. Objectives: Estimate the effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management for paediatric myalgic encephalomyelitis/chronic fatigue syndrome. Estimate the effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management for those with mild/moderate comorbid mood disorders. From a National Health Service perspective, estimate the cost-effectiveness of Fatigue In Teenagers on the interNET in the National Health Service compared to Activity Management over a 12-month horizon. Primary Outcome: 36-item Short Form Health Survey Physical Function subscale at 6 months post randomisation. Randomisation: Web-based, using minimisation with a random component to balance allocated groups by age and gender. Blinding: While the investigators were blinded to group assignment, this was not possible for participants, parents/carers and therapists. Results: The treatment of 314 adolescents was randomly allocated, 155 to Fatigue In Teenagers on the interNET in the National Health Service. Mean age was 14 years old and 63% were female. Primary outcome: At 6 months, participants allocated to Fatigue In Teenagers on the interNET in the National Health Service were more likely to have improved physical function (mean 60.5, standard deviation 29.5, n = 127) compared to Activity Management (mean 50.3, standard deviation 26.5, n = 138). The mean difference was 8.2 (95% confidence interval 2.7 to 13.6, p = 0.003). The result was similar for participants meeting the National Institute for Health and Care Excellence 2021 diagnostic criteria. Secondary outcomes: Fatigue In Teenagers on the interNET in the National Health Service participants attended, on average, half a day more school per week at 6 months than those allocated Activity Management, and this difference was maintained at 12 months. There was no strong evidence that comorbid mood disorder impacted upon the relative effectiveness of the two interventions. Similar improvement was seen in the two groups for pain and the Clinical Global Impression scale, with a mixed picture for fatigue. Both groups continued to improve, and no clear difference in physical function remained at 12 months [difference in means 4.4 (95% confidence interval −1.7 to 10.5)]. One or more of the pre-defined measures of a worsening condition in participants during treatment, combining therapist and patient reports, were met by 39 (25%) participants in the Fatigue In Teenagers on the interNET in the National Health Service group and 42 (26%) participants in the Activity Management group. A small gain was observed for the Fatigue In Teenagers on the interNET in the National Health Service group compared to Activity Management in quality-adjusted life-years (0.002, 95% confidence interval −0.041 to 0.045). From an National Health Service perspective, the costs were £1047.51 greater in the Fatigue In Teenagers on the interNET in the National Health Service group (95% confidence interval £624.61 to £1470.41). At a base cost-effectiveness threshold of £20,000 per quality-adjusted life-year, the incremental cost-effectiveness ratio was £457,721 with incremental net benefit of −£1001 (95% confidence interval −£2041 to £38). Conclusion: At 6 months post randomisation, compared with Activity Management, Fatigue In Teenagers on the interNET in the National Health Service improved physical function and school attendance. The additional cost of Fatigue In Teenagers on the interNET in the National Health Service and limited sustained impact mean it is unlikely to be cost-effective. Trial registration: This trial is registered as ISRCTN18020851. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 14/192/109) and is published in full in Health Technology Assessment; Vol. 28, No. 70. See the NIHR Funding and Awards website for further award information.

BACKGROUND Poor sleep is a common problem in adolescents aged 14 to 18 years. Difficulties with sleep have been found to have a bidirectional link to mental health problems. OBJECTIVE This new research sought to involve young people in the co-creation of a new app, particularly those from underserved communities. The Sleep Solved app uses science-based advice to improve sleep-related behaviors and well-being. The app was developed using the person-based approach, underpinned by the social cognitive theory and the social-ecological model of sleep health. METHODS Young people (aged 14-18 y) were recruited from across the United Kingdom to contribute to patient and public involvement (PPI) activities. In partnership with our peer researcher (MHJ), we used a multitude of methods to engage with PPI contributors, including web-based workshops, surveys, think-aloud interviews, focus groups, and app beta testing. RESULTS A total of 85 young people provided PPI feedback: 54 (64%) young women, 27 (32%) young men, 2 (2%) genderfluid people, 1 (1%) nonbinary person, and 1 (1%) who reported “prefer not to say.” Their levels of deprivation ranged from among the 40% most deprived to the 20% least deprived areas. Most had self-identified sleep problems, ranging from 2 to 3 times per week to >4 times per week. Attitudes toward the app were positive, with praise for its usability and use of science-based yet accessible information. Think-aloud interviews and a focus group identified a range of elements that may influence the use of the app, including the need to pay attention to language choices and readability. User experiences in the form of narrated audio clips were used to normalize sleep problems and provide examples of how the app had helped these users. CONCLUSIONS Young people were interested in using an app to better support their sleep and mental health. The app was co-created with strong links to theory- and evidence-based sleep hygiene behaviors. Future work to establish the effectiveness of the intervention, perhaps in a randomized controlled trial, would provide support for potential UK-wide rollout.