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ObjectivesChronic tic disorders (CTDs)—such as Tourette Syndrome (TS)—are neurodevelopmental disorders affecting at least 1% of the population, causing repetitive involuntary movements and vocalisations known as tics. This study aimed to explore the lived experiences of accessing healthcare for people with CTD or TS and their families in the United Kingdom (UK), as part of a larger programme of work to inform change to healthcare services for this population.DesignInformed and designed with extensive patient and public involvement, the design utilised qualitative research using focus groups. Reflexive thematic analysis was used to analyse the data.SettingParticipants were recruited via online support groups, social media and research registers.ParticipantsSeven focus groups were held separately with young people with tics (n=2), adults with tics (n=10) and parents/guardians of children with tics (n=11), led by a lived experience expert (coauthor PS) and facilitated by researchers. Discussion focused on three areas: the impact of living with tics, experience accessing healthcare for tics and management of tics.ResultsFive themes were developed highlighting challenges across the healthcare pathway, including gaining a diagnosis, and receiving treatment, resulting in the use of self-support methods to reduce tic expression or the impact of tics. Themes also illustrated perceptions that healthcare provider's knowledge impacted initial interactions with the healthcare system, and how healthcare systems were not felt to be prioritising CTDs.ConclusionsThe findings highlight a lack of prioritisation for tic disorders compounded by a healthcare structure which does not support a complex condition that requires a multidisciplinary approach. This research calls for improvements to UK healthcare services for CTD.

During the COVID-19 pandemic, digital contact-tracing has been employed in many countries to monitor and manage the spread of the disease. However, to be effective such a system must be adopted by a substantial proportion of the population; therefore, public trust plays a key role. This paper examines the NHS COVID-19 smartphone app, the digital contact-tracing solution in the UK. A series of interviews were carried out prior to the app’s release (n = 12) and a large scale survey examining attitudes towards the app (n = 1,001) was carried out after release. Extending previous work reporting high level attitudes towards the app, this paper shows that prevailing negative attitudes prior to release persisted, and affected the subsequent use of the app. They also show significant relationships between trust, app features, and the wider social and societal context. There is lower trust amongst non-users of the app and trust correlates to many other aspects of the app, a lack of trust could hinder adoption and effectiveness of digital contact-tracing. The design of technology requiring wide uptake, e.g., for public health, should embed considerations of the complexities of trust and the context in which the technology will be used.

IntroductionTourette syndrome is a common, disabling childhood-onset condition. Exposure and response prevention (ERP) is an effective treatment for tics, yet access remains limited due to a shortage of trained therapists and uneven geographical distribution of services. The ORBIT trial demonstrated that internet-delivered ERP is both clinically and cost-effective, but was developed on a university research platform, not suitable for widescale roll-out. To enable adoption by the National Health Service (NHS) in England, ORBIT has been redeveloped on an NHS compliant platform. This study will evaluate the usability, acceptability and preliminary outcomes of ORBIT on the new platform within an NHS tic disorder service.Methods and analysisThis single-cohort usability study will recruit 20 children and young people (aged 9–17) with tics and their chosen supporters (parents/carers). Participants will receive a 10-week online ERP intervention supported by trained coaches. Outcomes include uptake, adherence, system usability, satisfaction and clinical measures such as the Yale Global Tic Severity Scale, Parent Tic Questionnaire and Goal-Based Outcomes. Qualitative feedback will be collected via semi-structured exit interviews. Usability metrics and adverse events will be monitored throughout.Ethics and disseminationThe study has received ethical approval from North West Greater Manchester Research Ethics Committee (ref: 25/NW/0107). The findings from the study will inform future NHS adoption. The results will be submitted for publication in peer-reviewed journals.Trial registration numberISRCTN82718960. Registered 10 July 2025. https://doi.org/10.1186/ISRCTN82718960

IntroductionWhile digital technologies can increase the availability and access to evidence-based interventions, little is known about how users engage with them and the mechanisms associated with effective outcomes. Process evaluations are an important component in understanding the aforementioned factors. The ‘SPARX-UK’ study is a randomised controlled pilot and feasibility trial evaluating personalised human-supported (from an ‘eCoach’) vs a self-directed computerised cognitive behavioural therapy intervention (cCBT), called SPARX (Smart, Positive, Active, Realistic, X-factor thoughts), aimed at adolescents with mild to moderate depression. We are comparing supported vs self-directed delivery of SPARX to establish which format should be used in a proposed definitive trial of SPARX. The control is a waitlist group. We will conduct a process evaluation alongside the trial to determine how the intervention is implemented and provide context for interpreting the feasibility trial outcomes. We will also look at the acceptability of SPARX and how users engage with the intervention. This protocol paper describes the rationale, aims and methodology of the SPARX-UK trial process evaluation.Methods and analysisThe process evaluation will use a mixed-methods design following the UK Medical Research Council’s 2015 guidelines, comprising quantitative and qualitative data collection. This will include analysing data usage of participants in the intervention arms; purposively sampled, semi-structured interviews of adolescents, parents/guardians, eCoaches and clinicians/practitioners from the SPARX-UK trial; and analysis of qualitative comments from a survey from those who dropped out early from the trial. Quantitative data will be analysed descriptively. We will use thematic analysis in a framework approach to analyse qualitative data. Quantitative and qualitative data will be mixed and integrated to provide an understanding of how the intervention was implemented and how adolescents interacted with the intervention. This process evaluation will explore the experiences of adolescent participants, parents/guardians, eCoaches and clinicians/practitioners in relation to a complex digital intervention.EthicsEthical approval was granted by the National Health Service (NHS) Health Research Authority South West - Cornwall & Plymouth Research Ethics Committee (Ethics Ref: 22/SW/0149).DisseminationContextualising how the intervention was implemented, and the variations in uptake and engagement, will help us to understand the trial findings in greater depth. The findings from this process evaluation will also inform the decision about whether and how to proceed with a full randomised controlled trial, as well as the development of more effective interventions which can be personalised more precisely via varying levels of human support. We plan to publish the findings of the process evaluation and the wider project in peer-reviewed journals, as well as disseminate via academic conferences.Trial registration numberISRCTN: ISRCTN15124804. Registered on 16 January 2023, https://www.isrctn.com/ISRCTN15124804.

Digital contact tracing (DCT) apps have been implemented as a response to the COVID-19 pandemic. Research has focused on understanding acceptance and adoption of these apps, but more work is needed to understand the factors that may contribute to their sustained use. This is key to public health because DCT apps require a high uptake rate to decrease the transmission of the virus within the general population. This study aimed to understand changes in the use of the National Health Service Test & Trace (T&T) COVID-19 DCT app and explore how public trust in the app evolved over a 1-year period. We conducted a longitudinal mixed methods study consisting of a digital survey in December 2020 followed by another digital survey and interview in November 2021, in which responses from 9 participants were explored in detail. Thematic analysis was used to analyze the interview transcripts. This paper focuses on the thematic analysis to unpack the reasoning behind participants’ answers. In this paper, 5 themes generated through thematic analysis are discussed: flaws in the T&T app, usefulness and functionality affecting trust in the app, low trust in the UK government, varying degrees of trust in other stakeholders, and public consciousness and compliance dropping over time. Mistrust evolved from participants experiencing sociotechnical flaws in the app and led to concerns about the app’s usefulness. Similarly, mistrust in the government was linked to perceived poor pandemic handling and the creation and procurement of the app. However, more variability in trust in other stakeholders was highlighted depending on perceived competence and intentions. For example, Big Tech companies (ie, Apple and Google), large hospitality venues, and private contractors were seen as more capable, but participants mistrust their intentions, and small hospitality venues, local councils, and the National Health Service (ie, public health system) were seen as well-intentioned but there is mistrust in their ability to handle pandemic matters. Participants reported complying, or not, with T&T and pandemic guidance to different degrees but, overall, observed a drop in compliance over time. These findings contribute to the wider implications of changes in DCT app use over time for public health. Findings suggest that trust in the wider T&T app ecosystem could be linked to changes in the use of the app; however, further empirical and theoretical work needs to be done to generalize the results because of the small, homogeneous sample. Initial novelty effects occurred with the app, which lessened over time as public concern and media representation of the pandemic decreased and normalization occurred. Trust in the sociotechnical capabilities of the app, stakeholders involved, and salience maintenance of the T&T app in conjunction with other measures are needed for sustained use.

Background: Levels of well-being are declining, whereas rates of mental health problems remain high in young people. The World Health Organization defines mental health as not merely the absence of mental disorder but also includes social and psychological well-being as integral to positive mental health, highlighting that mental health is applicable to young people with mental health conditions and those without a diagnosis of a mental health condition. Reduced mental well-being have been identified in studies of young people with clinical populations, as well as in populations consisting of nonclinical young people. Self-help digital interventions can be delivered at mass at a low cost and without the need for trained input, thereby facilitating access to support for well-being. Self-help interventions are effective in young people with mental health conditions, but systematic reviews of such studies have been limited to randomized controlled trials, have not included reduced well-being as an inclusion criterion, and do not consider engagement factors such as retention. Objective: The objective of this study was to systematically review all controlled studies of digitally delivered, self-administered interventions for young people aged 9 to 25 years, with perceived or clinically diagnosed reduced psychological well-being. Participant retention and effectiveness of the interventions were also explored. Methods: A systematic search of the PsycInfo, EMBASE, Cochrane, Scopus, and MEDLINE databases from inception to 2021, reference searches of relevant papers, and gray literature was carried out for digitally controlled studies conducted with young people with perceived or clinically diagnosed reduced well-being, aimed at improving psychological well-being. Data were extracted to identify the effectiveness and retention rates of the interventions and the quality of the studies. Results: Overall, 1.04% (12/1153) of studies met the inclusion criteria: 83% (10/12) of studies were randomized controlled trials and 17% (2/12) were controlled pre-post studies. Most (6/12, 50%) studies aimed to improve symptoms of depression; 3 interventions aimed at both anxiety and depressive symptoms and 2 studies aimed at improving social functioning difficulties. Owing to the high risk of bias across interventions and lack of similar outcome measures, a meta-analysis was not conducted. Retention rates across studies were regarded as good, with moderate to high retention. Overall, the findings indicated that predominantly self-administered self-help interventions improved well-being in the areas targeted by the intervention and identified additional areas of well-being that were positively affected by interventions. Few interventions supported psychological well-being that was different from those used by young people with a clinical diagnosis of mental illness or young people from neurodiverse backgrounds. Conclusions: The findings, along with the advantages of self-help interventions, highlight the need for upscaling self-help interventions to better support vulnerable populations of young people who experience poor psychological well-being. Trial Registration: PROSPERO CRD42019129321; https://tinyurl.com/4fb2t4fz

Background Self‐harm and suicide related behaviours are increasing in young people, and clinical support is not adequately meeting needs. Improved approaches to assessment and the clinical management of self‐harm will result from codesign processes and include greater shared decision‐making between young people and practitioners. The CaTS‐App (an adapted digital version of the existing Card‐Sort Task for Self‐harm research tool) aims to facilitate a collaborative understanding of adolescent self‐harm and support decision‐making within clinical settings. The codevelopment of a digital, clinical tool which meets the needs of multiple stakeholders requires careful consideration. Methods We present a case‐study describing the participatory aspects of the development of the CaTS‐App, which included comprehensive patient involvement, research activities and coproduction with diverse young people aged 17–24 with lived experience of self‐harm. We share our processes and activities to deliver safe, engaging, sustainable, ethical and responsible participatory practice and co‐created knowledge, in the codevelopment of the CaTS‐App. Results Activities spanned a 48‐month period in both face‐to‐face and online settings. Example processes and activities are provided in narrative, tabular and diagrammatic form, alongside discussion of the rationale for choices made. A summary methodology is also shared to stimulate continued discussion and development of participatory approaches in digital mental health. Conclusions The paper contributes important insight and practical detail for the delivery of genuine participatory processes in digital mental health development when working with a population who may be considered vulnerable. We discuss a case‐study and working methodology for meaningful, safe and responsible involvement in the early Planning and Discovery phase of the development of a novel assessment and intervention app for self‐harm—the CaTS‐App This paper contributes to important discussions about the process and value of centering and evaluating participatory processes in the development of digital mental health interventions for self‐harm.

This paper reports on the growing issues experienced when conducting web-based–based research. Nongenuine participants, repeat responders, and misrepresentation are common issues in health research posing significant challenges to data integrity. A summary of existing data on the topic and the different impacts on studies is presented. Seven case studies experienced by different teams within our institutions are then reported, primarily focused on mental health research. Finally, strategies to combat these challenges are presented, including protocol development, transparent recruitment practices, and continuous data monitoring. These strategies and challenges impact the entire research cycle and need to be considered prior to, during, and post data collection. With a lack of current clear guidelines on this topic, this report attempts to highlight considerations to be taken to minimize the impact of such challenges on researchers, studies, and wider research. Researchers conducting web-based research must put mitigating strategies in place, and reporting on mitigation efforts should be mandatory in grant applications and publications to uphold the credibility of web-based research.

[This corrects the article DOI: 10.2196/58432.].

Young people (YP) with Tourette Syndrome (TS) and Tic Disorders (TD) experience difficulties with psychological wellbeing and reduced quality of life (QoL). Nonetheless, accessing healthcare support for these YP is difficult due to barriers including a lack of healthcare professionals, low healthcare coverage and reduced help-seeking behaviour of YP. Current psychological interventions for people with tics do not show the cost-savings or effectiveness to substantiate large-scale implementation. Interventions delivered digitally, utilising a self-help approach may overcome these limitations and have been shown to be effective in YP with mental health difficulties. Furthermore, the development of a wellbeing intervention using person, evidence and theory-based approaches could promote adherence and engagement to such an intervention.The current research aims to develop a digital self-help intervention to support and promote psychological wellbeing in YP with TDs. A person-based approach (PBA) was applied throughout. The research included a systematic review to assess similar interventions that were available for YP with TDs and YP with reduced psychological wellbeing. Qualitative research methods were used to interview YP with TDs, professionals who work with YP with TDs, and focus groups with parents and YP with TDs to explore what would be needed from such an intervention. Thematic analysis was used to code data inductively and a hybrid thematic analytical approach was used to apply deductive analysis to the data. The findings from across the methods were integrated to develop guiding principles and a logic model to support the future development of the intervention. The systematic review identified 985 studies, leaving 11 to be included in the review. Across the qualitative methods, 16 professionals, 51 YP and 35 parents or caregivers were recruited for interviews or focus groups. A digital health intervention (DHI) that would be suitably applied to YP with tics was not identified in the literature, and it was concluded that such an intervention would be desired by YP and thought useful by professionals. Many features and functions of the intervention were highlighted across participant groups, and the most important features were prioritised. These were combined with theory to develop guiding principles and a logic model.The research outputs include the development of guiding principles and a logic model, informed using the PBA, behaviour change theory and evidence. These findings will support future developers in creating an engaging and effective intervention for YP with tics, to promote and support their wellbeing.