Exploring the research needs, barriers and facilitators to the collection of biological data in adolescence for mental health research: a scoping review protocol paper.

INTRODUCTION: While research into adolescent mental health has developed a considerable understanding of environmental and psychosocial risk factors, equivalent biological evidence is lacking and is not representative of economic, social and ethnic diversity in the adolescent population. It is important to understand the possible barriers and facilitators to conduct this research. This will then allow us to improve our understanding of how biology interacts with environmental and psychosocial risk factors during adolescence. The objective of this scoping review is to identify and understand the needs, barriers and facilitators related to the collection of biological data in adolescent mental health research. METHODS AND ANALYSIS: Reviewers will conduct a systematic search of PubMed, Medline, Scopus, Cochrane, ERIC, EMBASE, ProQuest, EBSCO Global Health electronic databases, relevant publications and reference lists to identify studies published in the English language at any time. This scoping review will identify published studies exploring mental health/psychopathology outcomes, with biological measures, in participants between the ages of 11 and 18 and examine the reported methodology used for data collection. Data will be summarised in tabular form with narrative synthesis and will use the methodology of Levac et al, supplemented by subsequent recommendations from the Joanna Briggs Institute Scoping Review Methodology. ETHICS AND DISSEMINATION: Ethical approval is not required for this scoping review. The scoping review will be conducted with input from patient and public involvement, specifically including young people involved in our study ('Co-producing a framework of guiding principles for Engaging representative and diverse cohorts of young peopLE in Biological ReseArch in menTal hEalth'-www.celebrateproject.co.uk) Youth Expert Working Group. Dissemination will include publication in peer-reviewed journals, academic presentations and on the project website.

Protocol for a scoping review of how people with ME/CFS use the internet.

INTRODUCTION: Myalgic encephalomyelitis (ME) is a chronic neurological illness affecting many bodily systems, commonly the nervous and immune systems. Also known as chronic fatigue syndrome (CFS), key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep disturbance. With reported higher levels of online activity for people with ME/CFS than other patient groups (Westerby 2013 cited in Ytre-Arne) it is crucial to gain more knowledge of usage characteristics and experience of online use, and its integration into everyday life. This scoping review protocol details the proposed methods for gaining insight into this little known phenomenon. METHODS AND ANALYSIS: This review uses the methodological framework for conducting a scoping review by Arksey and O'Malley, with further guidance by Levac et al, and the Joanna Briggs Institute. It also refers to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols reporting guidelines. The following bibliographic databases will be searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations and Theses Global, Scopus, and Google Scholar for grey literature. Reference lists of included papers will be studied. Two reviewers will independently screen title abstracts, and then full text of studies against inclusion criteria. Remaining studies will be quality assessed using appropriate critical appraisal tools. Findings will be charted and mapped to gain in-depth knowledge of the use of the internet in people with ME/CFS. ETHICS AND DISSEMINATION: The findings from this review will be disseminated through peer-reviewed publication and a report for leading charities of ME/CFS. The review will collect secondary data only and therefore does not need ethical approval.

Youth partnership in suicide prevention research: moving beyond the safety discourse.

OBJECTIVE: In this communication article, we discuss coproduction in suicide prevention research, with an emphasis on involving young people. We critically reflect on the lessons we have learned by working alongside young people, and how these lessons may be useful to other research teams. SUMMARY: The meaningful involvement of young people in the design, implementation and translation of mental health research has received significant attention over the last decade. For most funding bodies, the involvement of patients and the public in the planning and delivery of research is advised and, in many cases, mandatory. When it comes to suicide prevention research, however, things are slightly different in practice. Involvement of young people in suicide prevention research has often been considered a controversial, unfeasible and even risky endeavour. In our experiences of working in this field, such concerns are expressed by funders, Higher Education Health and Safety committees and practitioners. By presenting an example from our research where the involvement of young people as experts by experience was integral, we highlight key lessons learnt that could maximise the potential of youth partnership in suicide prevention research. These lessons take on particular importance in mental health research against the background of long-entrenched power differences and the silencing of service user voices. Professional knowledge, obtained through education and vocational training, has historically taken priority over experiential knowledge obtained through lived experience, in psychiatric practice and research. Although this hierarchy has widely been challenged, any account of coproduction in mental health research is positioned against that background, and the remnants of those inequitable power relationships arguably take on greater resonance in suicide prevention research and require careful consideration to ensure meaningful involvement. CONCLUSION: We conclude that progress in suicide research cannot be fulfilled without the meaningful involvement of, and partnership with, young people with lived experience.

Maternal mental health: a key area for future research among women with congenital heart disease.

In this viewpoint, we respond to the recently published national priorities for research in congenital heart disease (CHD) among adults, established through the James Lind Alliance Priority Setting Partnership, with specific attention to priority 3 (mental health) and priority 5 (maternal health). Our recent policy impact project explored how maternal mental health is currently addressed in adult congenital heart disease (ACHD) services in the National Health Service, identified gaps and discussed possible ways forward. Our multidisciplinary discussion groups, which included women with lived experience of CHD and pregnancy, cardiology and obstetrics clinicians and medical anthropologists, found that while pregnancy and the postnatal period increase the mental health challenges faced by women with CHD, current services are not yet equipped to address them. Based on this work, we welcome the prioritisation of both mental health and maternal health in ACHD, and suggest that future research should focus on the overlaps between these two priority areas.

What does social cognition look like in everyday social functioning in Huntington's disease? A protocol for a scoping review to explore and synthesise knowledge about social cognition alongside day-to-day social functioning of people with Huntington's disease.

INTRODUCTION: Social cognition is problematic in Huntington's disease (HD). Despite the observations of clinicians and families, there is minimal empirical literature about how it presents in daily life and the impact on social functioning. This protocol forms the basis of a scoping review to synthesise both the quantitative knowledge and qualitative experiences of the HD community so that a visual and narrative map can address what is known and what is not known for the benefit of the community and clinicians and academics alike. METHODS AND ANALYSES: An umbrella scoping review of previous work and a scoping review of newer studies of social cognition and social functioning will be undertaken. The electronic databases PubMed, Medline, PsycINFO, Web of Science, Scopus, Embase and CINAHL will be searched to identify eligible studies from starting from 2003 to June 2023. A grey literature search and grey data search will also be undertaken. Quality appraisal of the included documents will use the Critical Appraisal Skills Programme and Authority, Accuracy, Coverage, Objectivity, Date, Significance checklists. A data charting table will be used for data extraction, with analysis of qualitative data using the framework method. The review findings will be presented in a visual form and in a narrative summary. ETHICS AND DISSEMINATION: Ethical review is not usually required as scoping reviews are produced via secondary data analysis, however, this protocol includes the use of grey data from a charity web forum and so in line with best practice for internet mediated research ethical review was sought and approved (STEM Ethical Review Committee, University of Birmingham-ERN_21-1028A). Review findings will be shared with service users and disseminated through a peer-reviewed publications, conference presentations and hosted via the website of the patient association charity the HD Association.

'Just one interview': making visible the hidden workload associated with qualitative research.

BACKGROUND: Appropriate costing and allocation of resources is vital to ensure that recruitment to a study is achieved on time and on target. However, there is little guidance concerning the workload associated with qualitative research. AIM: To review the planned versus actual workloads in a qualitative sub-study following elective cardiac surgery in children. DISCUSSION: Parents of children approached for a clinical trial were invited to participate in a semi-structured interview to explore their views about making decisions concerning their children's participation in the trial. A workload audit was conducted using anticipated points of contact with participants, and the duration of activities identified in the protocol and Health Research Authority statement of activities; these were compared with timed activities documented by the research team. CONCLUSION: The current system did not anticipate or capture the workload associated with conducting a relatively straightforward qualitative sub-study of a clinical trial with a research-engaged patient group. IMPLICATIONS FOR PRACTICE: Understanding the hidden workload associated with qualitative research is vital in ensuring that project timelines, recruitment targets and funding for research staff are realistic.

Patients', carers' and healthcare providers' views of patient-held health records in Kerala, India: A qualitative exploratory study.

INTRODUCTION: Poor medical information transfer across healthcare visits and providers poses a potential threat to patient safety. Patient-held health records (PHRs) may be used to facilitate informational continuity, handover communication and patient self-management. However, there are conflicting opinions on the effectiveness of PHRs, other than in maternal and child care. Moreover, the experiences of users of PHRs in low- and middle-income countries are critical in policy decisions but have rarely been researched. AIM: This study aimed to explore similarities and differences in the perspectives of patients, carers and healthcare providers (HCPs) on the current PHRs for diabetes and hypertension in Kerala. METHODS: A qualitative design was used comprising semistructured interviews with patients with diabetes/hypertension (n = 20), carers (n = 15) and HCPs (n = 17) in Kerala, India. Data were analysed using thematic analysis. RESULTS: Themes generated regarding the experiences with PHRs from each user group were compared and contrasted. The themes that arose were organized under three headings: use of PHRs in everyday practice; the perceived value of PHR and where practice and value conflict. We found that in the use of PHRs in everyday practice, multiple PHRs posed challenges for patients carrying records and for HCPs locating relevant information. Most carers carried all patients' past PHRs, while patients made decisions on which PHR to take along based on the purpose of the healthcare visit. HCPs appreciated having PHRs but documented limited details in them. The perceived value of PHRs by each group for themselves was different. While HCPs placed value on PHRs for enabling better clinical decision-making, preventing errors and patient safety, patients perceived them as transactional tools for diabetes and hypertension medications; carers highlighted their value during emergencies. CONCLUSION: Our findings suggest that users find a variety of values for PHRs. However, these perceived values are different for each user group, suggesting minimal functioning of PHRs for informational continuity, handover communication and self-management. PATIENT AND PUBLIC INVOLVEMENT: Patients and carers were involved during the pilot testing of topic guides, consent and study information sheets. Patients and carers gave their feedback on the materials to ensure clarity and appropriateness within the context.

Urban precarity and youth mental health: An interpretive scoping review of emerging approaches.

Circumstances of living are key to shaping emotional and affective experiences, long term health, wellbeing and opportunities. In an era characterised by rapid urbanisation across the majority of the world, there is increasing interest in the interaction between mental health and urban environments, but insufficient attention is paid to how mental health is situated in space and time. Socio-economic inequalities are prevalent in many urban environments globally, making conditions of living highly precarious for some social groups including young people. There remains a large volume of unmet mental health service needs, and young people are impacted by uncertain economic futures. The purpose of this scoping review is to develop an interdisciplinary and globally-informed understanding of the urban conditions which affect youth mental health across a range of scales, and to identify protective factors which can promote better youth mental health. We seek to broaden the scope of urban mental health research beyond the physical features of urban environments to develop an interpretive framework based on perspectives shared by young people. We illustrate how concepts from social theory can be used as an integrative framework to emphasise both young people's lived experiences and the wider cultural and political dynamics of urban mental health.

A qualitative process evaluation of social recovery therapy for enhancement of social recovery in first-episode psychosis (SUPEREDEN3).

BACKGROUND: Many individuals with first-episode psychosis experience severe and persistent social disability despite receiving specialist early intervention. The SUPEREDEN3 trial assessed whether augmenting early intervention in psychosis services with Social Recovery Therapy (SRT) would lead to better social recovery. AIMS: A qualitative process evaluation was conducted to explore implementation and mechanisms of SRT impact from the perspective of SUPEREDEN3 participants. METHOD: A subsample of SUPEREDEN3 trial participants (n = 19) took part in semi-structured interviews, which were transcribed verbatim and analysed thematically. Trial participants were early intervention service users aged 16-35 years with severe and persistent social disability. Both SRT plus early intervention and early intervention alone arm participants were interviewed to facilitate better understanding of the context in which SRT was delivered and to aid identification of mechanisms specific to SRT. RESULTS: The six themes identified were used to generate an explanatory model of SRT's enhancement of social recovery. Participant experiences highlight the importance of the therapist cultivating increased self-understanding and assertively encouraging clients to face feared situations in a way that is perceived as supportive, while managing ongoing symptoms. The sense of achievement generated by reaching targets linked to personally meaningful goals promotes increased self-agency, and generates hope and optimism. CONCLUSIONS: The findings suggest potentially important processes through which social recovery was enhanced in this trial, which will be valuable in ensuring the benefits observed can be replicated. Participant accounts provide hope that, with the right support, even clients who have persistent symptoms and the most severe disability can make a good social recovery.

A systematic review of home-based records in maternal and child health for improving informational continuity, health outcomes, and perceived usefulness in low and middle-income countries.

BACKGROUND: Evidence shows that a gap in the documentation of patients' past medical history leads to errors in, or duplication of, treatment and is a threat to patient safety. Home-based or patient-held records (HBR) are widely used in low and middle-income countries (LMIC) in maternal and childcare. The aim is to systematically review the evidence on HBRs in LMICs for (1) improving informational continuity for providers and women/families across health care visits and facilities, (2) to describe the perceived usefulness by women/families and healthcare providers, and (3) maternal and child health outcomes of using HBRs for maternal and child health care. METHODS: The protocol was registered in PROSPERO (CRD42019139365). We searched MEDLINE, EMBASE, CINAHL, and Global Index Medicus databases for studies with home-based records from LMICs. Search terms pertained to women or parent-held records and LMICs. Two reviewers assessed studies for inclusion using a priori study selection criteria- studies explaining the use of HBRs in LMIC for maternal and child health care. The included study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results from all study designs were summarised narratively. RESULTS: In total, 41 papers were included in the review from 4514 potential studies. Included studies represented various study designs and 16 countries. The least evaluated function of HBR was information continuity across health care facilities (n = 6). Overall, there were limited data on the usefulness of HBRs to providers and mothers/families. Home-based records were mostly available for providers during health care visits. However, the documentation in HBRs varied. The use of HBRs is likely to lead to improved antenatal visits and immunisation uptake, and skilled birth delivery in some settings. Mothers' knowledge of breastfeeding practices and danger signs in pregnancy improved with the use of HBRs. One randomised trial found the use of HBRs reduced the risk of cognitive development delay in children and another reported on trial lessened the risk of underweight and stunted growth in children. CONCLUSION: There is limited literature from LMICs on the usefulness of HBRs and for improving information transfer across healthcare facilities, or their use by women at home. Current HBRs from LMICs are sub-optimally documented leading to poor informational availability that defeats the point of them as a source of information for future providers.

Exploring Factors Affecting Health Care Providers' Behaviors for Maintaining Continuity of Care in Kerala, India; A Qualitative Analysis Using the Theoretical Domains Framework.

Introduction: Access to patients' documented medical information is necessary for building the informational continuity across different healthcare providers (HCP), particularly for patients with non-communicable diseases (NCD). Patient-held health records (PHR) such as NCD notebooks have important documented medical information, which can contribute to informational continuity in the outpatient settings for patients with diabetes and hypertension in Kerala. We aimed to use the theoretical domains framework (TDF) to identify the perceived HCP factors influencing informational and management continuity for patients with diabetes and hypertension. Methods: We re-analyzed semi-structured interview data for 17 HCPs with experience in the NCD programme in public health facilities in Kerala from a previous study, using the TDF. The previous study explored patients, carers and HCPs experiences using PHRs such as NCD notebooks in the management of diabetes and hypertension. Interview transcripts were deductively coded based on a coding framework based on the 14 domains of TDF. Specific beliefs were generated from the data grouped into the domains. Results: Data were coded into the 14 domains of TDF and generated 33 specific beliefs regarding maintaining informational and management continuity of care. Seven domains were judged to be acting as facilitators for recording in PHRs and maintaining continuity. The two domains "memory, attention and decision process" and "environmental context and resources" depicted the barriers identified by HCPs for informational continuity of care. Conclusion: In this exploration of recording and communicating patients' medical information in PHRs for patients with diabetes and hypertension, HCPs attributions of sub-optimal recording were used to identify domains that may be targeted for further development of supporting intervention. Overall, nine domains were likely to impact the barriers and facilitators for HCPs in recording in PHRs and communicating; subsequently maintaining informational and management continuity of care. This study showed that many underlying beliefs regarding informational continuity of care were based on HCPs' experiences with patient behaviors. Further research is needed for developing the content and appropriate support interventions for using PHRs to maintain informational continuity.

Self-Harm in Eating Disorders (SHINE): a mixed-methods exploratory study.

INTRODUCTION: Self-harm is highly prevalent among young people with eating disorders. However, why a young person may develop and continue to experience both an eating disorder and self-harm is unclear. This study will investigate the frequency, intensity, duration, function, context and processes of self-harm among people aged 16-25 diagnosed with an eating disorder. It will explore participants' perspectives on the genesis and functions of both their self-harm and eating disorder, as well as their support needs. The study was designed with the input of members of a Young Persons' Advisory Group, who will be key to study delivery and dissemination. METHODS AND ANALYSIS: This exploratory study has a sequential mixed-methods explanatory design. Between 70 and 100 young people aged 16-25 with both an eating disorder diagnosis and self-harm thoughts and/or behaviours will be recruited from three NHS Eating Disorder outpatient services in England. Phase 1: a 14-day (six prompts per day) ecological momentary assessment (EMA) of participants' feelings, thoughts, motivations, behaviours and experiences of self-harm. Phase 2: 20-30 participants from phase 1 will be reapproached to take part in an in-depth qualitative interview on the psychological, emotional and social factors that underlie their self-harm and eating disorder as well as their support needs. EMA data from phase 1 will be analysed using descriptive and multilevel statistics. Qualitative interview data from phase 2 will be analysed using inductive and deductive thematic analysis. Results from both phases will be integrated using a mixed-methods matrix, with each participant's data from both phases compared alongside comparative analysis of the datasets as a whole. ETHICS AND DISSEMINATION: The study gained ethical approval from the NHS HRA West Midlands-Black Country Research Ethics Committee (number: 296032). We anticipate disseminating findings to clinical, academic and lived experience audiences, at academic conferences, through peer-reviewed articles, and through various public engagement activities (eg, infographics, podcasts).

The effectiveness of gaming interventions for depression and anxiety in young people: systematic review and meta-analysis.

BACKGROUND: Recent research has investigated the use of serious games as a form of therapeutic intervention for depression and anxiety in young people. AIMS: To conduct a systematic review and meta-analysis into the effectiveness of gaming interventions for treating either depression or anxiety in individuals aged 12-25 years. METHOD: An electronic search was conducted on the 30 March 2020, using PsycINFO, ISI Web of Science Core Collection, Medline and EMBASE databases. Standardised effect sizes (Hedge's g) were calculated for between-participant comparisons between experimental (therapeutic intervention) and control conditions, and within-participant comparisons between pre- and post-intervention time points for repeated measures designs. RESULTS: Twelve studies (seven randomised controlled trials (RCTs) and five non-randomised studies) were included. For RCTs, there was a statistically significant and robust effect (g = -0.54, 95% CI -1.00 to -0.08) favouring the therapeutic intervention when treating youth depression. For non-RCTs, using a repeated measures design, the overall effect was also strong (g = -0.75, 95% CI -1.64 to 0.14) favouring therapeutic intervention, but this was not statistically significant. Interestingly, we found no statistically significant effect for treating youth anxiety. CONCLUSIONS: There is preliminary evidence to suggest that gaming interventions are an effective treatment for youth depression, but not anxiety. Further research is warranted to establish the utility, acceptability and effectiveness of gaming interventions in treating mental health problems in young people.

Material Environments and the Shaping of Anorexic Embodiment: Towards A Materialist Account of Eating Disorders.

Anorexia nervosa is a paradoxical disorder, regarded across disciplines as a body project and yet also an illness of disembodied subjectivity. This overlooks the role that material environments-including objects and spaces-play in producing embodied experiences of anorexia both within and outside treatment. To address this gap, this paper draws together two ethnographic studies of anorexia to explore the shared themes unearthed by research participants' engagements with objects that move across boundaries between treatment spaces and everyday lives. Demonstrating how the anorexic body is at once both phenomenologically lived and socio-medically constituted, we argue that an attention to materiality is crucial to understanding lived experiences. A materialist account of anorexia extends the literature on treatment resistance in eating disorders and offers a reconceptualisation of 'the body in treatment', showing how  objects and spaces shape, maintain, and even 'trigger' anorexia. Therefore, against the background of the high rates of relapse in eating disorders, this analysis calls for consideration of how interventions can better take account of eating disordered embodiment as shaped by material environments.

Exploring attributions of causality for child undernutrition: Qualitative analysis in Lusaka, Zambia.

Child undernutrition is responsible for 45% of all under-five deaths in low- and middle-income countries (LMICs) and numerous morbidities. Although progress has been made, high levels of child undernutrition persist in Zambia. Existing studies have explored primary caretakers' (PCs) explanatory models of child undernutrition in LMICs, without comparison with those of health care providers (HCPs). This paper examines and compares the perceived causes of child undernutrition among PCs and HCPs in Zambia. We conducted a qualitative study, using semistructured one-to-one and group interviews, with 38 PCs and 10 HCPs to explore their perceptions of child undernutrition and its perceived causes in Lusaka district, Zambia. Interview data were analysed with thematic analysis. Our findings indicate that PCs and HCPs in Lusaka district have divergent explanatory models of child undernutrition and perceive parental agency differently. In divergently framing how they conceptualise undernutrition and who is able to prevent it, these models underpin different attributions of causality and different opportunities for intervention. PCs highlighted factors such as child food preferences, child health, and household finances. Contrarily, HCPs stressed factors such as 'improper feeding', only highlighting factors such as wider economic conditions when these impacted specifically on health care services. One factor, identified by both groups, was 'inadequate mothering'. To accelerate the reduction of child undernutrition, interventions must address divergences between PCs and HCPs' explanatory models. Additionally, attention needs to be paid to how wider socio-economic and cultural contexts not only impact childhood undernutrition but shape attributions of causality.

How active can preschoolers be at home? Parents' and grandparents' perceptions of children's day-to-day activity, with implications for physical activity policy.

BACKGROUND: The importance of physical activity in early childhood for establishing long-term health is well understood, yet with the exception of recent WHO guidelines, public health initiatives rarely focus on children below school age. Moreover, little is known about how domestic spaces and day-to-day caring activities influence preschool-age children's physical activity. To examine this, we explore caregivers' perceptions of young children's activities within and outside the home, and we consider how lived experiences of caregiving align (or not) with current physical activity policy. METHODS: Semi-structured interviews with 49 parents and grandparents from 16 families were conducted in Oregon, USA; each family had a child aged 3-5 years. Questions focused on caregivers' perceptions of and involvement with children's body weights, activities, and food practices. The interviews were analysed using thematic analysis. Our analysis drew on a materialities framework, attending to relationships between children, caregivers, spaces in and around the home, and everyday activities. RESULTS: Four themes were developed: appropriateness of outside versus inside spaces for physical activity; making accommodations for physical activity in the home; active spaces of care, referring to relationships among space, activity type, and caregiver attention; and mundane movement, or the low-intensity movement of everyday life. Together, the results highlight that children's day-to-day activities cut across a spectrum of movement, mediated by available spaces and caregiving affordances. CONCLUSIONS: Attending to the full spectrum of children's movements highlights how children's activities interlink with family routines, available indoor and outdoor spaces, and the intended uses of these spaces. These interplays between space, care, and physical activity enacted at the household level should inform an integrated, systems-level public health approach to increasing health and well-being for preschool-age children. Suggestions for improvement include coordinating policy development across multiple fields (e.g., housing design, urban planning) that structure the activities of children and their caregivers across 'home' and 'outside' spaces.

Systematic review on the use of patient-held health records in low-income and middle-income countries.

OBJECTIVE: To review the available evidence on the benefit of patient-held health records (PHRs), other than maternal and child health records, for improving the availability of medical information for handover communication between healthcare providers (HCPs) and/or between HCPs and patients in low-income and middle-income countries (LMICs). METHODS: The literature searches were conducted in PubMed, EMBASE, CINAHL databases for manuscripts without any restrictions on dates/language. Additionally, articles were located through citation checking using previous systematic reviews and a grey literature search by contacting experts, searching of the WHO website and Google Scholar. RESULTS: Six observational studies in four LMICs met the inclusion criteria. However, no studies reported on health outcomes after using PHRs. Studies in the review reported patients' experience of carrying the records to HCPs (n=3), quality of information available to HCPs (n=1) and the utility of these records to patients (n=6) and HCPs (n=4). Most patients carry PHRs to healthcare visits. One study assessed the completeness of clinical handover information and found that only 41% (161/395) of PHRs were complete with respect to key information on diagnosis, treatment and follow-up. No protocols or guidelines for HCPs were reported for use of PHRs. The HCPs perceived the use of PHRs improved medical information availability from other HCPs. From the patient perspective, PHRs functioned as documented source of information about their own condition. CONCLUSION: Limited data on existing PHRs make their benefits for improving health outcomes in LMICs uncertain. This knowledge gap calls for research on understanding the dynamics and outcomes of PHR use by patients and HCPs and in health systems interventions. PROSPERO REGISTRATION NUMBER: CRD42019139365.

Understanding parents' decision-making on participation in clinical trials in children's heart surgery: a qualitative study.

OBJECTIVES: Few children undergoing heart surgery are recruited to clinical trials and little is known about the views and attitudes of parents towards trials. This study explored parents' perspectives on decision-making about their child's participation in a clinical trial during their elective cardiac surgery. DESIGN: Qualitative interview study. SETTING: Single-centre substudy of a multicentre, double-blind, randomised controlled trial to investigate the effects of remote ischaemic preconditioning in children undergoing cardiac surgery. PARTICIPANTS: Parents of children approached to participate in the trial, both consenters and decliners. METHODS: Semistructured interviews were conducted face-to-face or by telephone following discharge, digitally audio-recorded, transcribed and thematically analysed. RESULTS: Of 46 patients approached for the trial, 24 consenting and 2 declining parents agreed to participate in an interview (21 mothers, 5 fathers). Parental decision-making about research was influenced by (1) potential risks or additional procedures; (2) personal benefit and altruism for the 'cardiac community'; (3) information, preparation, timing and approach; and (4) trust in the clinical team and collaboration with researchers. All of these were placed within the context of their understanding of the trial and knowledge of research. CONCLUSIONS: Parents of children undergoing cardiac surgery attach value to clinical research and are supportive of clinical trials when there is no or minimal perceived additional risk. These findings enhance our understanding of the factors that influence parents' decision-making and should be used to inform the design and conduct of future paediatric surgical trials. TRIAL REGISTRATION NUMBER: ISRCTN12923441; Pre-results.

The Impact of COVID-19 on Young People's Mental Health in the UK: Key Insights from Social Media Using Online Ethnography.

There is increasing evidence of the psychological impact of COVID-19 on various population groups, with concern particularly focused on young people's mental health. However, few papers have engaged with the views of young people themselves. We present findings from a study into young people's discussions on social media about the impact of COVID-19 on their mental health. Real-time, multi-platform online ethnography was used to collect social media posts by young people in the United Kingdom (UK), March 2020-March 2021, 1033 original posts and 13,860 associated comments were analysed thematically. Mental health difficulties that were described as arising from, or exacerbated by, school closures, lost opportunities or fraught family environments included depression, anxiety and suicidality. Yet, some also described improvements to their mental health, away from prior stressors, such as school. Young people also recounted anxiety at the ramifications of the virus on others. The complexities of the psychological impact of COVID-19 on young people, and how this impact is situated in their pre-existing social worlds, need recognising. Forging appropriate support necessitates looking beyond an individualised conceptualisation of young people's mental health that sets this apart from broader societal concerns. Instead, both research and practice need to take a systemic approach, recognising young people's societal belonging and social contexts.

#Online harms or benefits? An ethnographic analysis of the positives and negatives of peer-support around self-harm on social media.

BACKGROUND: There is emerging evidence of the potentially detrimental impact of social media on young people's mental health. Against this background, online self-harm content has been a recent focus of concern across academia, policy and the media. It has been argued to encourage or even cause acts such as self-cutting through mechanisms of contagion. However, little is known about why a young person might engage with such content or about its impact on behaviour or well-being. METHODS: Online ethnographic observation of interactions around self-harm on Twitter, Reddit and Instagram: collection and analysis of 10,169 original posts and 36,934 comments, both written and pictorial, at two time-points in 2018 and 2019. Ten in-depth semi-structured interviews exploring engagements with self-harm content on social media. RESULTS: Our data show that peer support is the central component of online interactions around self-harm. Young people accessing such content are likely to already be self-harming; they may turn to social media to understand, and seek help for, their actions and feelings in a context of offline stigma and service support gaps. This paper engages with the mechanisms, complexities and impact of this peer-support, reflecting on the benefits and dangers to caring for oneself and others through social media. CONCLUSIONS: Self-harm content is a fraught issue at the centre of current debates around risks and opportunities for child and adolescent mental health in the digital age. Whilst the importance of supporting young people's online safety is clear, moves to eradicate self-harm content must be undertaken with caution so as not to cause unintentional harm. Our research highlights a need to think beyond a model of contagion, instead attending to other mechanisms of harm and benefit. In so doing, it challenges prevailing attitudes towards online communication about self-harm and accepted approaches to managing this.