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BackgroundImproving recovery from acute symptoms and preventing relapse are two significant challenges in severe mental illness. We developed a personalized smartphone-based app to monitor symptoms in real time and validated its acceptance, reliability, and validity. ObjectiveTo assess (i) acceptability of continuous monitoring to SMI patients and health professionals over 3 months; (ii) impact of active self-monitoring on positive psychotic symptoms assessed at 6 and 12 weeks; and (iii) the feasibility of detecting early warning signs of relapse. MethodsThe active symptom monitoring smartphone app was built into an end-to-end system in two NHS Trusts to enable real-time symptom self-monitoring and detection by the clinical team of early signs of relapse in people with severe mental illness. We conducted an open randomized controlled trial of active symptom monitoring compared to usual management to assess: (i) acceptability and safety of continuous monitoring over 3 months; (ii) impact of active self-monitoring on positive psychotic symptoms assessed at 6 and 12 weeks; (iii) feasibility of detecting early warning signs of relapse communicated to the healthcare staff via an app streaming data to the electronic health record. Eligible participants with a Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) diagnosis of schizophrenia and related disorders, and a history of relapse within the previous two years were enrolled from an early intervention team and a community mental health team. ResultsOf 181 eligible patients, 81 (45%) consented and were randomized to either active symptom monitoring or management as usual. At 12 weeks, 90% (33/36) of those in the active monitoring group continued to use the system and exhibited an adherence rate (defined as responding to >33% of alerts) of 84% (30/36}. Active symptom monitoring was associated with no difference on the empowerment scale in comparison to the usual management group at 12 weeks. The pre-planned intent-to-treat analysis of the primary outcome, a positive score on the Positive and Negative Syndrome Scale (PANSS) scale, showed a significant reduction in the active symptom monitoring group over 12 weeks in the early intervention center. Alerts for personalized early warning signs of relapse were built into the workflows of both NHS Trusts, and 100% of health professional staff used the system in a new digital workflow. Qualitative analyses supported the acceptability of the system to participants and staff. ConclusionsThe active smartphone monitoring system is feasible and was accepted by users in a 3-month study of people with severe mental illness, with surprisingly high levels of adherence. App use was associated with psychotic symptom improvement in recent-onset participants, but not those with longstanding illness, supporting the notion of improved self-management. When built into clinical management workflows to enable personalized alerts of symptom deterioration, the app has demonstrated utility in promoting earlier intervention for relapse. Trial RegistrationISRCTN Registry ISRCTN88145142; http://www.isrctn.com/ISRCTN88145142

BackgroundWearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated. ObjectiveThis study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA). MethodsFor the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ≥50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis. ResultsA total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day. ConclusionsThis study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period. International Registered Report Identifier (IRRID)RR2-10.2196/10238

BackgroundThe huge increase in smartphone use heralds an enormous opportunity for epidemiology research, but there is limited evidence regarding long-term engagement and attrition in mobile health (mHealth) studies. ObjectiveThe objective of this study was to examine how representative the Cloudy with a Chance of Pain study population is of wider chronic-pain populations and to explore patterns of engagement among participants during the first 6 months of the study. MethodsParticipants in the United Kingdom who had chronic pain (≥3 months) and enrolled between January 20, 2016 and January 29, 2016 were eligible if they were aged ≥17 years and used the study app to report any of 10 pain-related symptoms during the study period. Participant characteristics were compared with data from the Health Survey for England (HSE) 2011. Distinct clusters of engagement over time were determined using first-order hidden Markov models, and participant characteristics were compared between the clusters. ResultsCompared with the data from the HSE, our sample comprised a higher proportion of women (80.51%, 5129/6370 vs 55.61%, 4782/8599) and fewer persons at the extremes of age (16-34 and 75+). Four clusters of engagement were identified: high (13.60%, 865/6370), moderate (21.76%, 1384/6370), low (39.35%, 2503/6370), and tourists (25.44%, 1618/6370), between which median days of data entry ranged from 1 (interquartile range; IQR: 1-1; tourist) to 149 (124-163; high). Those in the high-engagement cluster were typically older, whereas those in the tourist cluster were mostly male. Few other differences distinguished the clusters. ConclusionsCloudy with a Chance of Pain demonstrates a rapid and successful recruitment of a large, representative, and engaged sample of people with chronic pain and provides strong evidence to suggest that smartphones could provide a viable alternative to traditional data collection methods.

BackgroundThe increasing ownership of smartphones provides major opportunities for epidemiological research through self-reported and passively collected data. ObjectiveThis pilot study aimed to codesign a smartphone app to assess associations between weather and joint pain in patients with rheumatoid arthritis (RA) and to study the success of daily self-reported data entry over a 60-day period and the enablers of and barriers to data collection. MethodsA patient and public involvement group (n=5) and 2 focus groups of patients with RA (n=9) supported the codesign of the app collecting self-reported symptoms. A separate “capture app” was designed to collect global positioning system (GPS) and continuous raw accelerometer data, with the GPS-linking providing local weather data. A total of 20 patients with RA were then recruited to collect daily data for 60 days, with entry and exit interviews. Of these, 17 were loaned an Android smartphone, whereas 3 used their own Android smartphones. ResultsOf the 20 patients, 6 (30%) withdrew from the study: 4 because of technical challenges and 2 for health reasons. The mean completion of daily entries was 68% over 2 months. Patients entered data at least five times per week 65% of the time. Reasons for successful engagement included a simple graphical user interface, automated reminders, visualization of data, and eagerness to contribute to this easily understood research question. The main barrier to continuing engagement was impaired battery life due to the accelerometer data capture app. For some, successful engagement required ongoing support in using the smartphones. ConclusionsThis successful pilot study has demonstrated that daily data collection using smartphones for health research is feasible and achievable with high levels of ongoing engagement over 2 months. This result opens important opportunities for large-scale longitudinal epidemiological research.

Congenital adrenal hyperplasia (CAH) encompasses a range of autosomal recessive inherited enzyme deficiencies that impact cortisol biosynthesis pathways. Although reported as a rare and lifelong disorder, it holds chronic health risks for individuals that can influence menstruation. The purpose of this environmental scan and integrative literature review was to identify health information pertinent to CAH and menstruation in order to inform health providers, increase patient education, and promote menstrual wellbeing. Analysis identified that while information about menses is reported, information about menstrual irregularities and their management in adolescents and women with CAH is uncertain. Furthermore, there is insufficient good quality research and knowledge on CAH and menstruation to inform health providers in their practice with this population. The need for individuals with CAH to access evidence-informed information is constrained by the state of current understanding and limitations in knowledge translation. The importance of having trustworthy and safe spaces in which to ask questions and draw on ethically sound, language appropriate, and evidence-informed material is paramount in supporting women's confidence and wellbeing across their lifetime. We encourage the building of stronger relationships between researchers, health providers, support groups and individuals to improve knowledge translation and dissemination regarding CAH and menstruation.

Children's independent mobility (CIM) is the freedom of children to move around their neighbourhood or community without adult supervision. The aim of this study was to explore experiences with CIM from the perspectives of children and their parents living in rural and remote areas of British Columbia, Canada. Semi-structured interviews were conducted with 21 parent–child dyads or triads (45 participants). Child participants aged 7–12 were invited to create and describe drawings, maps, or take images of their independent mobility. Artwork and interview transcripts were analysed following an inductive thematic approach and mapped to the social-ecological model. We developed four themes to describe rural and remote family perspectives on CIM: (1) natural places, spaces, and forces; (2) embracing informal and unstructured play destinations; (3) decision-making and knowing when they are ready; (4) neighbourhood and community environments. Children identified several environmental characteristics impacting their independent mobility including wildlife, seasonal weather patterns, and lack of destinations. Parents reported the environment of rural communities, including neighbourhood cohesiveness and people looking out for each other, as being supportive of CIM. To promote CIM in rural and remote areas, efforts should focus on providing education on wildlife encounters, creating safe and interesting destinations for play, and consider children's safety and connectivity in road design. [ABSTRACT FROM AUTHOR]

Author(s): Ruth Elizabeth Watkinson, Richard Williams, Stephanie Gillibrand, Caroline Sanders, Matt Sutton There is an error in the Funding Disclosure. The correct Funding Disclosure reads: This work was funded by [...]

The COVID-19 pandemic brought about changes to the lives of families with young children. It has been associated with physical and psychological risk, yet the impact on younger children is poorly examined. The aim of this qualitative study was to examine how the COVID-19 pandemic impacted the day-to-day life of parents of young children living in a small northern city in British Columbia, Canada. Ten mothers with children aged 0–5 years participated in a six-week longitudinal study between November 2020 and March 2021. This article presents data from entry and exit interviews that were analysed using Todorov's narrative theory. Three key themes were identified: (1) gaps in health services; (2) gaps in early childhood education and programs; and (3) changes to/lost social interactions. Limited opportunities to engage with providers caused frustration and left parents feeling disempowered or dissatisfied. Family support and well-being were negatively impacted by a loss in social connectivity. Despite unpredictability and worries about child development, most of the mothers found ways to cherish the time to 'stop and refocus'. Overall, the families evidenced resilience, despite a loss in relational habits. [ABSTRACT FROM AUTHOR]

Introduction: Remote (digital and/or telephone) access and consultation models are being driven by national policy with the goal being that the National Health Service operate on a remote‐first (digital‐first) basis by 2029. Previous research has suggested that remote methods of access to care and consulting may act to widen health inequalities for certain patients and/or groups such as those from ethnic minorities. South Asian (SA) patients comprise the largest ethnic minority group in England. Understanding the experiences and needs of this group is critical to ensuring that general practice can deliver equitable, quality health care. Methods: Qualitative study. 37 participants (from Indian, Pakistani and/or Bangladeshi background) were recruited to take part in either in‐person preferred language focus groups or remote semistructured interviews in the English language. Thematic analysis was conducted to identify themes in the qualitative data. Findings: Three major interlinked themes were identified: (1) reduced access, (2) reduced patient choice and (3) quality and safety concerns. The findings highlight access issues split by (i) general issues with appointment access via any remote means and (ii) specific issues related to language barriers creating additional barriers to access and care. Some patients valued the convenience of remote access but also raised concerns regarding appointment availability and reduced patient choice. Face‐to‐face consultations were preferable but less available. The findings underscore how participants perceived remote care to be of lesser quality and less safe. Concerns were greatest for those with limited English proficiency (LEP), with the removal of non‐verbal aspects of communication and 'hands‐on' care leading to perceptions of reduced psycho‐social safety. Conclusion: SA patients' experiences of remote‐led primary care access and care delivery were negative with only a minority viewing it positively and for certain limited scenarios. Face‐to‐face models of care remain the preferred mode of consultation, particularly for those with LEP. Hybrid models of access offer patients the greatest choice, and are likely to meet the varying needs of the South‐Asian patient population going forwards. The remote first approach to primary care may be achievable as a service ideal, but its limitations need to be recognised and accounted for to ensure that primary care can be an equitable service, both now and in the future. Public Contribution: Members of the public were involved in all phases of research in the study. This included co‐working in partnership throughout the study including, reviewing patient‐facing documents, recruiting participants, data facilitation, translation work, interpretation of the data and co‐authors on this manuscript. The key to the success of our study was collaborative teamwork, which involved experienced members of the public with SA cultural knowledge working together with and integral to the research team for all components. [ABSTRACT FROM AUTHOR]

Introduction: Long-term conditions are a major burden on health systems. One way to facilitate more research and better clinical care among patients with long-term conditions is to collect accurate data on their daily symptoms (patient-generated health data) using wearable technologies. Whilst evidence is growing for the use of wearable technologies in single conditions, there is less evidence of the utility of frequent symptom tracking in those who have more than one condition. Aims: To explore patient views of the acceptability of collecting daily patient-generated health data for three months using a smartwatch app. Methods: Watch Your Steps was a longitudinal study which recruited 53 patients to track over 20 symptoms per day for a 90-day period using a study app on smartwatches. Semi-structured interviews were conducted with a sub-sample of 20 participants to explore their experience of engaging with the app. Results: In a population of older people with multimorbidity, patients were willing and able to engage with a patient-generated health data app on a smartwatch. It was suggested that to maintain engagement over a longer period, more 'real-time' feedback from the app should be available. Participants did not seem to consider the management of more than one condition to be a factor in either engagement or use of the app, but the presence of severe or chronic pain was at times a barrier. Conclusion: This study has provided preliminary evidence that multimorbidity was not a major barrier to engagement with patient-generated health data via a smartwatch symptom tracking app. [ABSTRACT FROM AUTHOR]

Background: Health inequalities in the UK are widening, particularly since the COVID-19 pandemic. Community pharmacies are the most visited healthcare provider in England and are ideally placed to provide and facilitate access to care for those most disadvantaged. Aim: To explore the experiences and needs of community pharmacy teams in providing care for marginalised groups and how this has changed since the COVID-19 pandemic. Design and setting: A qualitative study in community pharmacy and across primary care. Method: Semi-structured interviews were undertaken with members of community pharmacy teams, primary care network (PCN) pharmacists, GPs, and nurses in the North of England. Results: In total, 31 individuals participated in an interview (26 pharmacy staff, three GPs, and two nurses). Most participants acknowledged that their pharmacy had become busier since COVID-19 because of increased footfall compounded by patient difficulties in navigating remote digital systems. Few participants had received any formal training on working with marginalised communities; however, organisational barriers (such as lack of access to translation facilities) combined with interorganisational barriers (such as lack of integrated care) made it more difficult to provide care for some marginalised groups. Despite this, the continuity of care provided by many pharmacies was viewed as an important factor in enabling marginalised groups to access and receive care. Conclusion: There are opportunities to better utilise the skills of community pharmacy teams. Resources, such as access to translation services, and interventions to enable better communication between community pharmacy teams and other primary care services, such as general practice, are essential. [ABSTRACT FROM AUTHOR]

Background COVID-19 vaccine uptake is lower amongst most minority ethnic groups compared to the White British group in England, despite higher COVID-19 mortality rates. Here, we add to existing evidence by estimating inequalities for 16 minority ethnic groups, examining ethnic inequalities within population subgroups, and comparing the magnitudes of ethnic inequalities in COVID-19 vaccine uptake to those for routine seasonal influenza vaccine uptake. Methods and findings We conducted a retrospective cohort study using the Greater Manchester Care Record, which contains de-identified electronic health record data for the population of Greater Manchester, England. We used Cox proportional hazards models to estimate ethnic inequalities in time to COVID-19 vaccination amongst people eligible for vaccination on health or age (50+ years) criteria between 1 December 2020 and 18 April 2021 (138 days of follow-up). We included vaccination with any approved COVID-19 vaccine, and analysed first-dose vaccination only. We compared inequalities between COVID-19 and influenza vaccine uptake adjusting by age group and clinical risk, and used subgroup analysis to identify populations where inequalities were widest. The majority of individuals (871,231; 79.24%) were White British. The largest minority ethnic groups were Pakistani (50,268; 4.75%), 'other White background' (43,195; 3.93%), 'other ethnic group' (34,568; 3.14%), and Black African (18,802; 1.71%). In total, 83.64% (919,636/1,099,503) of eligible individuals received a COVID-19 vaccine. Uptake was lower compared to the White British group for 15 of 16 minority ethnic groups, with particularly wide inequalities amongst the groups 'other Black background' (hazard ratio [HR] 0.42, 95% CI 0.40 to 0.44), Black African (HR 0.43, 95% CI 0.42 to 0.44), Arab (HR 0.43, 95% CI 0.40 to 0.48), and Black Caribbean (HR 0.43, 95% CI 0.42 to 0.45). In total, 55.71% (419,314/752,715) of eligible individuals took up influenza vaccination. Compared to the White British group, inequalities in influenza vaccine uptake were widest amongst the groups 'White and Black Caribbean' (HR 0.63, 95% CI 0.58 to 0.68) and 'White and Black African' (HR 0.67, 95% CI 0.63 to 0.72). In contrast, uptake was slightly higher than the White British group amongst the groups 'other ethnic group' (HR 1.11, 95% CI 1.09 to 1.12) and Bangladeshi (HR 1.08, 95% CI 1.05 to 1.11). Overall, ethnic inequalities in vaccine uptake were wider for COVID-19 than influenza vaccination for 15 of 16 minority ethnic groups. COVID-19 vaccine uptake inequalities also existed amongst individuals who previously took up influenza vaccination. Ethnic inequalities in COVID-19 vaccine uptake were concentrated amongst older and extremely clinically vulnerable adults, and the most income-deprived. A limitation of this study is the focus on uptake of the first dose of COVID-19 vaccination, rather than full COVID-19 vaccination. Conclusions Ethnic inequalities in COVID-19 vaccine uptake exceeded those for influenza vaccine uptake, existed amongst those recently vaccinated against influenza, and were widest amongst those with greatest COVID-19 risk. This suggests the COVID-19 vaccination programme has created additional and different inequalities beyond pre-existing health inequalities. We suggest that further research and policy action is needed to understand and remove barriers to vaccine uptake, and to build trust and confidence amongst minority ethnic communities., Author(s): Ruth Elizabeth Watkinson 1,*, Richard Williams 2, Stephanie Gillibrand 1, Caroline Sanders 3, Matt Sutton 1 Introduction The COVID-19 pandemic has disproportionately affected people with pre-existing socioeconomic and health [...]

Charles Bonnet syndrome (CBS) is a condition associated with sight loss, characterised by vivid, spontaneous visual hallucinations. Currently, it is unclear whether CBS presents challenges to participation in physical activities, in addition to barriers attributed to sight loss alone. The purpose of this scoping review was to establish the extent of the literature, and gaps in the knowledge base, concerning the impact of CBS on older adults' engagement in physical activities. Review conduct was informed by Arksey and O'Malley and Levac et al.'s scoping review methodologies. Six academic databases were searched during May 2021, yielding 2709 results: eight articles met eligibility criteria. Two additional sources were located via a reference check of included papers and stakeholder consultation. Quantitative cross-sectional studies (n = 3) indicate that CBS may interfere with the ability to move around, while qualitative sources (case report/series n = 6; autobiography n = 1) show that sudden presentation of hallucinations in a person's pathway, or threatening content, may jeopardise safety while walking. Moving to avoid a hallucination could present a fall risk if attention is diverted from environmental hazards. One case report stated that CBS did not affect personal care activities. Due to a limited evidence base, further empirical research is needed to achieve a comprehensive understanding about how CBS affects older adults' participation in physical activities. [ABSTRACT FROM AUTHOR]

The transition to adulthood is a critical time for everyone to build independence, experience new things, and become self-sufficient. With medical advances, individuals with complex chronic conditions are surviving into adulthood. As such they withstand additional challenges during this stage of their life including; facing a discontinuity of care, loss of prior health-care networks and champions, and a shift toward increased responsibility and self-management of their conditions. Often this shift results in the need for primary care providers to act as care managers, coordinating care and supporting the young adult as they navigate adulthood. In exploring the role of primary care providers with this population we reviewed the literature to identify what strategies primary care providers can use to enhance the transition process for young adults ages 15 to 25 years with complex chronic conditions exiting pediatric services. An integrative literature review approach was used to systematically search the contemporary literature. Applying inclusion criteria and quality assessment of relevant research and gray literature we identified 12 studies that warranted detailed review and analysis. Analysis of the studies highlighted four key themes: relationships, fear and anxiety, preparedness, and communication and collaboration. It was evident that health-care transition for young adults with complex chronic conditions was complicated by their psychosocial development and extensive health and service needs. Health-care transition is a team effort influenced by local contexts, resources, and relational practices. Both groups of primary care providers and young adults must be prepared prior to transition if they are to become immersed and engaged in this work. The population of young adults with complex chronic conditions exiting pediatric care will continue to grow as access to care delivery and medical technology continue to expand. While health-care transition for this population is complicated by extensive needs and psychosocial development, primary care providers can act as key supports in employing strategies to enhance the transition process for these young adults. [ABSTRACT FROM AUTHOR]

Patient and Public Involvement and Engagement (PPIE) in research is recognised by the National Institute for Health and Care Research as crucial for high quality research with practical benefit for patients and carers. Patient and public contributors can provide both personal knowledge and lived experiences which complement the perspectives of the academic research team. Nevertheless, effective PPIE must be tailored to the nature of the research, such as the size and scope of the research, whether it is researcher-led or independently commissioned, and whether the research aims to design an intervention or evaluate it. For example, commissioned research evaluations have potential limits on how PPIE can feed into the design of the research and the intervention. Such constraints may require re-orientation of PPIE input to other functions, such as supporting wider engagement and dissemination. In this commentary, we use the 'Guidance for Reporting Involvement of Patients and the Public' (GRIPP2) short form to share our own experiences of facilitating PPIE for a large, commissioned research project evaluating the National Health Service Diabetes Prevention Programme; a behavioural intervention for adults in England who are at high risk of developing type 2 diabetes. The programme was already widely implemented in routine practice when the research project and PPIE group were established. This commentary provides us with a unique opportunity to reflect on experiences of being part of a PPIE group in the context of a longer-term evaluation of a national programme, where the scope for involvement in the intervention design was more constrained, compared to PPIE within researcher-led intervention programmes. We reflect on PPIE in the design, analysis and dissemination of the research, including lessons learned for future PPIE work in large-scale commissioned evaluations of national programmes. Important considerations for this type of PPIE work include: ensuring the role of public contributors is clarified from the outset, the complexities of facilitating PPIE over longer project timeframes, and providing adequate support to public contributors and facilitators (including training, resources and flexible timelines) to ensure an inclusive and considerate approach. These findings can inform future PPIE plans for stakeholders involved in commissioned research. Plain English Summary: This commentary uses the 'Guidance for Reporting Involvement of Patients and the Public' checklist to describe the activities and lessons learned from the work of a Patient and Public Involvement and Engagement (PPIE) group working with researchers evaluating the National Health Service (NHS) Diabetes Prevention Programme (a nine-month behavioural support programme offered to adults who are at risk of developing type 2 diabetes). The evaluation aimed to find out if the NHS Diabetes Prevention Programme was meeting its aim of reducing type 2 diabetes whilst offering value for money. The PPIE group was made up of members of the public who were either living with diabetes, at risk of diabetes, or had a family history of diabetes. Their aim was to support the work of the research team to identify research priorities, design the research, clarify the meaning of the research results, and help communicate the results to the wider public. However, given that the programme was an NHS service already being delivered in practice, there were limits to what the PPIE group could do in terms of designing the intervention. Instead, our public contributors were involved in all stages of conducting the research, with greater focus on communication of findings from the research evaluation. This report provides an opportunity to reflect on PPIE in a longer-term evaluation of a national programme and reflect on involvement in dissemination and policy impact. We hope that future evaluation programmes can learn from our experiences and optimise PPIE for similar national evaluations. [ABSTRACT FROM AUTHOR]

Participatory arts are increasingly recognised as a valuable and accessible mechanism for giving a voice to the experiences of individuals' health and healthcare. In recent years, there has been a move towards embedding participatory arts-based models into public engagement processes. Here, we contribute to the existing literature on the use of participatory arts-based approaches and their role in health research and healthcare practise, focusing on two interlinked approaches, the creation of personas and storytelling. We draw on two recent projects which have utilised these approaches to inform subsequent healthcare research and as a professional training tool to improve patient experience in a healthcare setting. We add to emerging literature to outline the benefits of these approaches in supporting research and training in healthcare settings, with a focus towards the co-produced foundations of these approaches. We demonstrate how such approaches can be utilised to capture different forms of voices, experiences and perspectives to help inform healthcare research and training, rooted in the lived experience of individuals who are directly involved in the creative process of developing personas via storytelling. These approaches challenge the listener to "walk in someone else's shoes", using their own homes and lives as a theatrical set in which to envisage someone else's story, involving the listener in the creative process through (re)imagining the stories and experiences of the characters. Greater use of immersive, co-produced participatory art-based approaches should be used in PPIE to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, via a process which is based on co-creation and co-production, reorientates the researcher-participant dynamic to fully centre those involved in the research at the heart of the tools used to guide health and healthcare research. In this way, it may also aid in trust and relationship building between institutions and communities in a way which is focused around positive, creative methods to aid health research and healthcare processes. Such approaches may help to break down barriers between academic institutions, healthcare sites and communities. Plain English summary: This article describes how storytelling and the creation of personas, as two forms of participatory arts-based approaches, may be used to inform health research and healthcare practise, including training of healthcare professionals. We draw on two recent projects which have been created with members of diverse local communities, detailing how creative methods can be used in this way. This model of creating art with communities and people with lived experience of health conditions enables ownership of these processes and encourages participants and users to 'take a walk in someone else's shoes'. We suggest that using such approaches helps to further break down barriers between academic institutions, healthcare sites and communities and may boost trust between different stakeholders. Greater use of immersive, co-created participatory arts-based approaches can be used to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, helps to shift power dynamics, and, in this way, may aid in trust and relationship building between institutions and communities in a way that encourages empathy generated from creative methods to aid health research and healthcare processes. [ABSTRACT FROM AUTHOR]

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan. [ABSTRACT FROM AUTHOR]