Weaponising safeguarding in the age of Cass: English social work and paternalism in practice with trans children and young people and their families

BackgroundIntegrated care has become a central feature of health system reform worldwide. In England, Integrated Care Systems (ICS) are intended to improve integration across public health, the National Health Service (NHS), education and social care. By April 2021, England had been divided into 42 geographical areas, each tasked with developing local ICS provision. However, it was not clear how ICSs would address the specific needs of children and young people (CYP). This study elicited the views of senior professional stakeholders in the first year of the ICS national roll out, to learn how integrated care for CYP was being implemented within the ICSs and future plans for service provision.MethodsA qualitative analysis of in-depth interviews with stakeholders, including healthcare professionals, NHS managers and local authority leaders (n = 25) selected from a diverse sample of ICSs (n = 7) across England, conducted during winter 2021/22. Reflexive thematic analysis involving a collaborative coding approach was used to analyse interview transcripts.ResultsFour themes were identified, indicating challenges and opportunities for ICSs in relation to the health of CYP: 1) Best start in life (a more holistic approach to health afforded by integrated care); 2) Local and national contexts (tensions between local and national settings and priorities); 3) Funding and planning (instituting innovative, long-term plans using limited existing CYP funding streams); 4) Organisational complexities (integrating the work of diverse organisations).ConclusionsThe views of stakeholders, provided at the beginning of the journey towards developing local ICS CYP provision, revealed a common aspiration to change focus from provision of acute, largely adult-orientated services towards one with a broader, population health remit, including prevention and early intervention. This would be delivered by integration of a range of local services, including health, education, housing and social care, to set CYP on a life-long path towards improved health and wellbeing. Yet there was an awareness that change would take place over time within existing national policy and funding frameworks, and would require overcoming organisational barriers through further developing local collaborations and partnerships. As ICSs mature, the experiences of stakeholders should continue to be canvassed to identify practical lessons for successful CYP integrated care.

An early economic evaluation of Kooth, a web-based mental health platform for children and young people with emerging mental health needs

Core outcome sets (COS) are an agreed upon set of outcomes that should be evaluated in a clinical trial, allowing data from similar areas of health care to be compared and pooled in meta-analyses, informing whether treatments work and/or harm. Pediatric COS have been developed by identifying outcomes that are important to relevant stakeholders, and recently the importance of including children and young people (CYP) as stakeholders has been recognized. While research on the overall development of pediatric COS exists, no comprehensive review has examined methods implemented by COS developers to include CYP in the development process. This systematic review aims to establish current practice and identify issues in including CYP in developing a pediatric COS, particularly in the context of rare conditions. We conducted a systematic review of studies in the Core Outcome Measures in Effectiveness Trials (COMET) initiative database that developed pediatric COS for children and young people (CYP; 0-18 years). Data were extracted on methods that used to include CYP, barriers to their inclusion and stakeholder participation. Authors were contacted when methodological details were unclear or insufficiently reported. A total of 70 articles corresponding to 53 pediatric COS were analyzed, 18 (34%) included CYP and 16 (30%) were developed for a rare condition/condition with a rare form. CYP were included in advisory groups (six of 18 COS), pilot surveys/questionnaires (three of 18 COS), focus groups (two of 18 COS), workshop (one of 18 COS), qualitative interviews (eight of 18 COS), Delphi (and other) surveys (15 of 18 COS), and consensus meetings (five of 18 COS). COS developers adapted methods for patient and public involvement and engagement work to improve participation in COS, include CYP in generating outcomes, and reach consensus on the most important outcomes to include in the COS. Barriers to including CYP were age and the condition/area of COS development. Our findings show that with appropriate adaptations, CYP can be included in COS development, regardless of age and communication needs, or whether conditions are rare or common. This review proposes adaptations to refine current pediatric COS methodology to increase CYP inclusion. Core outcome sets (COS) are lists of the most important things to measure in a clinical trial-such as symptoms, side effects, or any changes in a person's health-to help show whether a treatment works. When a COS is used in clinical trials for a particular condition, the results are more helpful because they can be combined and compared. This makes it easier to see whether a treatment is helping or harming the people who have that condition. A COS is developed in different stages; first, a list of important things to measure, called outcomes, is put together. One way to make this list is by asking the people who know the condition best-such as patients who live with it and the health-care professionals or researchers who treat or study it-, and what they think should be included. Next, everyone involved votes on which outcomes they think are the most important. The outcomes that receive the most support across all groups are then brought together to form the final COS. To make a COS useful for a condition that affects children and young people (CYP), it is very important to involve CYP with the condition themselves. Some studies described the general steps of creating a COS for CYP, but there is very little information about exactly how COS developers adjusted the methods at each stage so that CYP could take part. This study examines this aspect more closely. We looked at COS that have been created for CYP aged 0 to 18 years and gathered information on how developers adjusted the methods to include CYP and what challenges they faced. Where details were missing or unclear, we contacted the COS developer. Our results showed that one-third of the COS analyzed included CYP at different stages of COS development. Developers used approaches that helped CYP express what outcome mattered most to them, agree on priorities with other groups, and help develop better ways for CYP to take part in research. CYP were not included in COS development when they were young and when their condition made it difficult to participate. Our study shows that by making appropriate adjustments, CYP can be included in COS development, irrespective of age, communication differences, or the type of condition. We propose adaptations to refine current methods to make CYP participation easier and more effective.

Health in children and young people (CYP) has been impacted by the COVID-19 pandemic. Restrictions in mobility and social contacts limited children and young people in their social development and led to adverse psychological impact. Rising rates of poverty because of lockdowns have been shown to particularly impact families with children, which may exacerbate already existing health inequalities. Containment policies have decreased access to health services and decreased support for CYP from health and social care professionals during the pandemic, which have posed a significant threat to children and young people's physical health, mental and emotional health. To ensure that policies aimed at mitigating the impact of the pandemic on CYP are relevant, it is vital that the voices of CYP are heard. Article 12 of UNCRC establishes the right of a child to express their views in all matters affecting them and for those to be given appropriate consideration. This is a right that is largely not upheld in policymaking, and therefore it is important that the public health sector as advocates for children and young people (CYP) lead on this.The aims of this skill building workshop are to: Showcase positive examples of engagement of CYP in policymakingGain knowledge on the practicalities to make engagement with CYP a mutually beneficial experience Workshop Format The session will be chaired by a young person to role-model the inclusion of CYP, this workshop advocates for.Professor Sonia Saxena, President of the EUPHA section on Child and Adolescent Public Health, will open the session with key points on the importance of engaging CYP in policy making during the COVID-19 pandemic and beyond.A further two presentations will be delivered by young people who will reflect on their own experience of engagement with policy/research and utilise the lessons learnt to improve CYP engagement in the future.This will be followed by a presentation by a paediatric doctor reflecting on their role in engaging with children and young people to develop a national healthcare patient experience guideline.This series of short presentations will be followed by an interactive case scenario on CYP engagement during the C-19 pandemic. The case study will aim to discuss some of the key practicalities to consider when engaging children and young people in policy making.The session will close with a short panel discussion with the presenters and consensus vote by attendees of next steps to take the learning from the workshop forward. Workshop proceedings will be written up and submitted for publication in a peer-reviewed journal. Twitter hashtags will be devised to allow attendees to share work they embark upon within an online community. This community will also be fostered through meetings supported by EUPHA where members can share best practice and solutions to problems encountered.Speakers/Panelists Sonia Saxena Imperial College London, London, UK Rakhee Shah Imperial College, London, UK Gabrielle Mathews Imperial College London, London, UK Bea Albermann University of Zurich, Zurich, Switzerland Jinane Ghattas UCLouvain, Saint-Josse-ten-Noode, Belgium Key messages COVID19 will have a large impact on children and young people’s health.Engaging children and young people to co-produce policies that affect them, when planning for recovery from the pandemic is crucial in ensuring our policies and research are most impactful.

This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem-based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. Sixty-six CYP (aged 10-18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12-page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript.

Children and young people (CYP) in the UK suffer worse health and well-being outcomes than their peers in comparable countries across a range of physical and mental health measures, including...

The Long COVID in Children and Young People (CLoCk) study began in April 2021 against a backdrop of uncertainty surrounding the diagnosis, phenotype, prevalence, duration and treatment of long COVID among children and young people (CYP). At the time, there was limited evidence suggesting that around 10% of people infected with SARS-CoV-2 experience prolonged symptoms after initial infection. 1 CYP were mostly asymptomatic or had low symptom burden at the time of acute infection compared with adults. [2] [3] [4] However, the longer-term consequences of infection among CYP were unclear, with some CYP reporting ongoing symptoms such as fatigue, dyspnoea, heart palpitations, chest pain, headaches, difficulties in concentrating, muscle weaknesses and sore throat 6 to 8 months after clinical diagnosis of COVID-19. 5 There was a clear need to identify CYP at higher risk of having longer-term consequences due to COVID-19 infection and the prevalence of long COVID among CYP, while • The Children and Young People with Long COVID (CLoCk) study is a national matched prospective study which was set up with the aims of (i) describing the clinical phenotype of post-COVID symptomology in children and young people (CYP), (ii) producing a research definition for long COVID in CYP and (iii) establishing the prevalence of long COVID in CYP. • In total, 219 175 CYP aged 11-17 years, who were tested for SARS-CoV-2 via polymerase chain reaction (PCR) testing between September 2020 and March 2021 in England, were invited to participate. Test-positive and test-negative CYP were matched at study invitation on month of test, age, sex and geographical region. • CYP were enrolled into the study at 3, 6 or 12 months after their index PCR test (n ¼ 31 012). Depending on when they enrolled, they were also invited to fill in follow-up questionnaires at 6, 12 and 24 months after their index test. The overall response rate was 14.1%, with retention across sweeps varying from 36.6% to 54.1%. • The dataset includes information on physical and mental health using validated scales over time, allowing for examination of withinindividual change. CYP report symptoms themselves rather than relying on parental report or administrative records.

Background Despite the focus on patient experience in recent Department of Health policies and the fact that every year 7%– 10% of children are admitted to hospital and/or attend hospital outpatient clinics, children and young people (CYP) are rarely surveyed about their experience of care. Of those surveys that do exist about CYP’s experiences, most have been developed by adults and/or are completed by adults, with little direct input from CYP themselves. Our aim, therefore, was to develop patient reported experience measures (PREMs) with CYP for CYP. Methods The PREMs were developed over a number of stages, each of which involved extensive patient engagement to ensure that the CYP PREMs reflected those elements of their hospital experience that were most important to CYP. Elements of the PREMs development included focus groups to determine the aspects of care which are the key drivers of patient experience, cognitive testing to ensure that CYP understood the questions as intended, the language is appropriate and the response options are comprehensive, and focus groups to determine the most appropriate mode through which to administer the CYP PREMs and to gain an understanding of patients’ design preferences. Results Inpatient and outpatient PREMs were developed for three age groups – 8–11 years, 12–13 years and 14–16 years. Three clear themes were evident from the initial focus groups and provided the structure to the questionnaires – hospital facilities, hospital staff and treatment and tests. During cognitive testing questions were generally understood but needed some clarification, and questionnaires were identified as being too long. Some questions were therefore removed or reworded, questionnaire navigation was improved and response scales amended. During the subsequent focus groups CYP indicated that they preferred tick-box questions with a non-standard layout and that the design should not be themed around hospital. Paper rather than an electronic format was preferred by many but depended on personal experience. Two questionnaire designs were selected. In total 229 CYP participated in the PREMs development. Conclusion CYP wanted to engage in the development of the CYP PREMs and clearly expressed a wish to be able to report meaningfully on their hospital experience.

Background Juvenile idiopathic arthritis (JIA) is an umbrella term for seven relapsing-remitting inflammatory conditions in children and young people (CYP). Early, intensive treatment can prevent long-term damage; however, established drugs exhibit a delayed response, prompting the need for rapid-onset treatment in the form of corticosteroids. Given a lack of consensus as to which corticosteroid induction regimen should be used for CYP with JIA, a feasibility trial of different regimens is needed. The aim was to achieve consensus among CYP, families, and healthcare professionals (HCPs) about the primary outcome measures and protocol components to include in a prospective feasibility study. Methods A modified Nominal Group Technique was used to achieve consensus on the most appropriate primary outcome measure to be included in a prospective feasibility study, in addition to other protocol components such as inclusion/exclusion criteria. Fifteen participants participated in the process, including a combination of CYP with JIA, families (n = 9) and HCPs (n = 6). Results In the first vote, participants agreed that Juvenile Arthritis Disease Activity Score (JADAS) and Physician Global Assessment Score were most meaningful. During sub-group discussions, the need for a composite score which captured the voice of CYP and families was emphasised. In the second vote, JADAS and the JIA Core Set were identified as the most important. Further discussions led to the results of the third vote, agreeing JADAS as the primary outcome measure of choice being measured at 6 weeks after commencement of treatment. The majority of HCPs, CYP and families voted for all JIA sub-types to be included in a prospective feasibility study, with some queries about the inclusion of systemic JIA given its unique presentation. Participants also identified the need for more frequent data collection time points to capture the rapid onset of corticosteroid action, while CYP and families opted for accessible mechanisms for participation, such as digital follow-up strategies. Conclusion It is feasible to include CYP, families and HCPs in synthesising complex concepts to agree by consensus the design components of clinical research. The primary outcome measure for inclusion in a prospective feasibility study of corticosteroid regimens in CYP with JIA was co-prioritised, with CYP and families taking a leading role in the ultimate selection of an appropriate outcome measure and other study protocol components. Using consensus methods with CYP, families and HCPs is a systematic and rigorous way in which to select outcome measures that are both meaningful and relevant to everyone involved in the care and treatment of CYP with JIA. Conflicts of Interest The authors declare no conflicts of interest.

ObjectivesChildren with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the...

ObjectivesBarking and Dagenham is an economically deprived borough of London with high levels of child poverty and more than 600 children and young people (CYP) who are in the care...

ObjectivesAlmost 90% of children and young people (CYP) have been exposed to the SARS-COV-2 virus.1 A small proportion of those who were infected will go on to develop Long COVID(...

Plain English summaryResearchers test treatments to ensure these work and are safe. They do this by studying the effects that treatments have on patients by measuring outcomes, such as pain and quality of life. Often research teams measure different outcomes even though each team is studying the same condition. This makes it hard to compare the findings from different studies and it can reduce the accuracy of the treatment advice available to patients. Increasingly, researchers are tackling this problem by developing ‘core outcome sets’. These are lists of outcomes that all researchers working on a given condition should measure in their studies. It is important that patients have a voice in the development of core outcome sets and children and young people are no exception. But their voices have rarely been heard when core outcome sets are developed. Researchers are trying to address this problem and make sure that core outcome sets are developed in ways that are suitable for children and young people. As a first step, we held two international workshops with children and young people to listen to their views. They emphasised the importance of motivating young people to participate in developing core outcome sets, making them feel valued, and making the development process more interactive, enjoyable and convenient. We hope this commentary will encourage researchers to include children and young people when developing core outcome sets and to adapt their methods so these are suitable for young participants. Future research is important to examine whether these adaptations are effective.BackgroundDifferent research teams looking at treatments for the same condition often select and measure inconsistent treatment outcomes. This makes it difficult to synthesise the results of different studies, leads to selective outcome reporting and impairs the quality of evidence about treatments. ‘Core outcome sets’ (COS) can help to address these problems. A COS is an agreed, minimum list of outcomes that researchers are encouraged to consistently measure and report in their studies. Including children and young people (CYP) as participants in the development of COS for paediatric conditions ensures that clinically meaningful outcomes are measured and reported. However, few published COS have included CYP as participants. COS developers have described difficulties in recruiting and retaining CYP and there is a lack of guidance on optimising COS methods for them. We aimed to explore CYP’s views on the methods used to develop COS and identify ways to optimise these methods.Main bodyThis commentary summarises discussions during two workshops with approximately 70 CYP (aged 10–18 years old) at the International Children’s Advisory Network Research and Advocacy Summit, 2018. Delegates described what might motivate them to participate in a COS study, including feeling valued, understanding the need for COS and the importance of input from CYP in their development, and financial and other incentives (e.g. certificates of participation). For Delphi surveys, delegates suggested that lists of outcomes should be as brief as possible, and that scoring and feedback methods should be simplified. For consensus meetings, delegates advised preparing CYP in advance, supporting them during meetings (e.g. via mentors) and favoured arrangements whereby CYP could meet separately from parents and other stakeholders. Overall, they wanted COS methods that were convenient, enjoyable and engaging.ConclusionThis commentary points to the limitations of the methods currently used to develop COS with CYP. It also points to ways to motivate CYP to participate in COS studies and to enhancements of methods to make participation more engaging for CYP. Pending much needed research on COS methods for CYP, the perspectives offered in the workshops should help teams developing COS in paediatrics and child health.

BackgroundThe active involvement of patients and the public in the design and delivery of health research has been increasingly encouraged, if not enforced. Knowledge of how this is realised in practice, especially where children and young people (CYP) are concerned, is limited, partly due to the low level of reporting of patient and public involvement (PPI) in general. The aim of this work was to assess how researchers funded by the National Institute for Health and Care Research (NIHR) report the involvement of CYP in the design and conduct of child health research to better understand the opportunities offered to CYP, and the realities of involvement in practice.MethodsA participation matrix, analysis framework and accompanying tools were adapted from existing frameworks, including a child-rights informed framework, the Guidance for Reporting Involvement of Patients and the Public Checklist Short Form (GRIPP2SF), and NIHR reporting expectations. Child-focused research reports were identified from the NIHR Journals Library, including any interventional or observational study involving CYP aged 0–< 24 years. In two co-design workshops with healthcare professionals and CYP, we tested and refined the participation matrix, analysis framework and accompanying tools.ResultsOnly thirty-two NIHR reports out of 169 (19%) were identified as relevant and included reporting of PPI with CYP. We identified significant variability in the way PPI with CYP was reported. Only 4/32 (12%) reports fully met NIHR (and GRIPP2SF) reporting criteria. Only 3/32 (9%) reports formally evaluated or self-reflected on PPI activities with CYP, whilst 15/32 (47%) provided minimal information about CYP involvement. The most common approach to involving CYP (23/32, 72%) was through the medium of existing groups or networks.ConclusionDespite the NIHR’s commitment to increase the quality, transparency, and consistency of reporting PPI, the reporting of involvement with CYP remains sub-optimal. Neglecting to report key details of involvement methods and impacts deprives the research community of knowledge to advance the field of delivering ‘meaningful’ PPI with CYP. Practical guidance on how researchers can report the processes and outputs of CYP involvement more rigorously may help child health researchers to involve them more meaningfully. This research offers practical tools informed by CYP to aid the reporting process.

ObjectivesTo analyze clinical characteristics of children and young people (CYP) with T2DM presenting with DKA over a 3-year period in a DGH. Comparison of clinical characteristics of this group with...