Development of a self-help digital intervention for young people with Tourette syndrome

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

Development of a self-help digital intervention for young people with Tourette syndrome

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

Desired features and facets of a digital technology tool for the self-management of wellbeing in a non-clinical sample of young people

Background: Adaptive coping behaviours can improve wellbeing for young people experiencing life stressors while maladaptive coping can increase vulnerability to mental health problems in youth and into adulthood. Young people could potentially benefit from the use of digital technology tools if the latter could help enhance their coping skills and overcome barriers in help-seeking behaviours. However, little is known about the desired digital technology use for self-management of wellbeing among young people in the general population. Objective: This was a small, qualitative study aimed at looking into what young people desire from digital technology tools for the self-management of their wellbeing. Methods: Young people aged 12 to 18 were recruited from the general community to take part in semi-structured interviews. Recorded data from the interviews were transcribed and analysed using inductive thematic analysis. Results: Fourteen participants were recruited and completed the study, with a mean age of 14.6 (3/14 female). None of the participants reported using any digital tools specifically designed to manage wellbeing. However, as indicated through the emerged themes, young people used digital technology to reduce their stress levels and manage their mood, mainly through games, music and videos. Overall, identified themes denoted that young people were keen on using such tools and desired certain facets and features of an ideal tool for the self-management of wellbeing. Themes relative to the facets indicated what young people felt a tool should do to improve wellbeing, including being immersed into a stress-free environment, being uplifting and such a tool would direct them to resources based on their needs. The feature-based themes suggested that young people wanted the tool to be flexible and to enable engagement with others whilst also being sensitive to privacy. Conclusions: The young people interviewed in this study did not report engaging with digital technology specialised to improve wellbeing but instead used media already accessed in their daily lives in order to self-manage their psychological states. As a result, the variety of coping strategies reported and digital tools used was limited to the resources that were already being used for recreational and social purposes. The present findings contribute to the scarce research into young people’s preferred use of digital technology tools for the self-management of their wellbeing. However, this was a small-scale study and the current participant sample is not representative of the general youth population therefore the results are only tentative and warrant further investigation

Understanding Trust and Changes in Use After a Year With the NHS COVID-19 Contact Tracing App in the United Kingdom: Longitudinal Mixed Methods Study

Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusions: 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

The relationship between trust and attitudes towards the COVID-19 digital contact-tracing app in the UK

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

Desired features of a digital technology tool for self-management of well-being in a nonclinical sample of young people: qualitative study

Background: Adaptive coping behaviours can improve wellbeing for young people experiencing life stressors while maladaptive coping can increase vulnerability to mental health problems in youth and into adulthood. Young people could potentially benefit from the use of digital technology tools if the latter could help enhance their coping skills and overcome barriers in help-seeking behaviours. However, little is known about the desired digital technology use for self-management of wellbeing among young people in the general population. Objective: This was a small, qualitative study aimed at looking into what young people desire from digital technology tools for the self-management of their wellbeing. Methods: Young people aged 12 to 18 were recruited from the general community to take part in semi-structured interviews. Recorded data from the interviews were transcribed and analysed using inductive thematic analysis. Results: Fourteen participants were recruited and completed the study, with a mean age of 14.6 (3/14 female). None of the participants reported using any digital tools specifically designed to manage wellbeing. However, as indicated through the emerged themes, young people used digital technology to reduce their stress levels and manage their mood, mainly through games, music and videos. Overall, identified themes denoted that young people were keen on using such tools and desired certain facets and features of an ideal tool for the self-management of wellbeing. Themes relative to the facets indicated what young people felt a tool should do to improve wellbeing, including being immersed into a stress-free environment, being uplifting and such a tool would direct them to resources based on their needs. The feature-based themes suggested that young people wanted the tool to be flexible and to enable engagement with others whilst also being sensitive to privacy. Conclusions: The young people interviewed in this study did not report engaging with digital technology specialised to improve wellbeing but instead used media already accessed in their daily lives in order to self-manage their psychological states. As a result, the variety of coping strategies reported and digital tools used was limited to the resources that were already being used for recreational and social purposes. The present findings contribute to the scarce research into young people’s preferred use of digital technology tools for the self-management of their wellbeing. However, this was a small-scale study and the current participant sample is not representative of the general youth population therefore the results are only tentative and warrant further investigation

Desired features and facets of a digital technology tool for the self-management of wellbeing in a non-clinical sample of young people

Background: Adaptive coping behaviours can improve wellbeing for young people experiencing life stressors while maladaptive coping can increase vulnerability to mental health problems in youth and into adulthood. Young people could potentially benefit from the use of digital technology tools if the latter could help enhance their coping skills and overcome barriers in help-seeking behaviours. However, little is known about the desired digital technology use for self-management of wellbeing among young people in the general population. Objective: This was a small, qualitative study aimed at looking into what young people desire from digital technology tools for the self-management of their wellbeing. Methods: Young people aged 12 to 18 were recruited from the general community to take part in semi-structured interviews. Recorded data from the interviews were transcribed and analysed using inductive thematic analysis. Results: Fourteen participants were recruited and completed the study, with a mean age of 14.6 (3/14 female). None of the participants reported using any digital tools specifically designed to manage wellbeing. However, as indicated through the emerged themes, young people used digital technology to reduce their stress levels and manage their mood, mainly through games, music and videos. Overall, identified themes denoted that young people were keen on using such tools and desired certain facets and features of an ideal tool for the self-management of wellbeing. Themes relative to the facets indicated what young people felt a tool should do to improve wellbeing, including being immersed into a stress-free environment, being uplifting and such a tool would direct them to resources based on their needs. The feature-based themes suggested that young people wanted the tool to be flexible and to enable engagement with others whilst also being sensitive to privacy. Conclusions: The young people interviewed in this study did not report engaging with digital technology specialised to improve wellbeing but instead used media already accessed in their daily lives in order to self-manage their psychological states. As a result, the variety of coping strategies reported and digital tools used was limited to the resources that were already being used for recreational and social purposes. The present findings contribute to the scarce research into young people’s preferred use of digital technology tools for the self-management of their wellbeing. However, this was a small-scale study and the current participant sample is not representative of the general youth population therefore the results are only tentative and warrant further investigation

Self-help digital interventions targeted at improving psychological wellbeing in young people with perceived or clinically diagnosed reduced wellbeing: A Systematic Review

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/4fb2t4f

A comparison of temporal pathways to self-harm in young people compared to adults: A pilot test of the Card Sort Task for Self-harm online using Indicator Wave Analysis

Self-harm is complex, multifaceted, and dynamic, typically starts in adolescence, and is prevalent in young people. A novel research tool (the Card Sort Task for Self-harm; CaTS) offers a systematic approach to understanding this complexity by charting the dynamic interplay between multidimensional factors in the build-up to self-harm. Sequential analysis of CaTS has revealed differences in key factors between the first and the most recent episode of self-harm in adolescence. Rates of self-harm typically decline post-adolescence, but self-harm can continue into adulthood. A comparison between factors linked to self-harm in young people vs. adults will inform an understanding of how risk unfolds over time and clarify age-specific points for intervention. A pilot online adaptation (CaTS-online) and a new method (Indicator Wave Analysis; IWA) were used to assess key factors in the build-up to self-harm. Community-based young people ( = 66; 18-25 years, = 21.4; = 1.8) and adults ( = 43; 26-57 years, = 35; = 8.8) completed CaTS-online, documenting thoughts, feelings, events, and behaviours over a 6-month timeline for the first ever and most recent self-harm. A notable interdependence between factors and time points was identified using IWA. Positive emotion at and immediately after self-harm exceeded the threshold for both groups for both episodes. Feeling better following self-harm was more pronounced for the first-ever episodes. Impulsivity was an important immediate antecedent to self-harm for both groups at both episodes but most markedly for young people. Acquired capability was notable for adults' most recent episodes, suggesting this develops over time. Burdensomeness was only more notable for adults and occurred 1 week prior to a recent episode. Both groups revealed patterns of accessing support that were helpful and unhelpful. Commonalities and differences in the temporal organisation of factors leading to and following self-harm were identified in young people and adult pathways which shed light on age-specific factors and possible points of intervention. This has implications for clinical support and services around approaches to positive feelings after self-harm (especially for first-ever self-harm), feeling of burdensomeness, impulsivity, and acquired capability leading up to self-harm. Support is provided for card-sort approaches that enable the investigation of the complex and dynamic nature of pathways to self-harm