scholarly journals Development of a Pathway for Multidisciplinary Neurodevelopmental Assessment and Diagnosis in Children and Young People

Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1033
Author(s):  
Marion Rutherford ◽  
Donald Maciver ◽  
Lorna Johnston ◽  
Susan Prior ◽  
Kirsty Forsyth
Keyword(s):  
Young People ◽  
Lived Experience ◽  
Waiting Times ◽  
Complex Interventions ◽  
Assessment Tools ◽  
Advisory Group ◽  
Children And Young People ◽  
Implementation Team ◽  
Scottish Government ◽  
Assessment And Diagnosis

There is a variable standard of access to quality neurodevelopmental assessment and diagnosis. People may have negative experiences, encountering lengthy waiting times, and inconsistent practices. Practitioners need guidance on standards and practices for assessment and diagnosis matched to new ways of working. In this paper, we present a new pathway and recommendations for multidisciplinary neurodevelopmental assessment and diagnosis for children and young people (<19 years), developed by the Scottish Government funded National Autism Implementation Team (NAIT). Our research used the Medical Research Council guidance for the development of complex interventions and included several iterative stages. Stage 1: n = 44 stakeholders attended an event on developing new practices for diagnosis and assessment. Stage 2: a literature synthesis was completed by the research team of clinical guidelines and diagnosis and assessment tools. Stage 3: an event with n = 127 stakeholders included discussion and debate of the data from stages 1 and 2. Recommendations and a draft pathway were written. Stage 4: successive drafts of recommendations and the pathway documentation were circulated among an advisory group, including multidisciplinary clinical experts and people with lived experience, until the final pathway was agreed upon. The finalised pathway includes guidance on terminology, assessment, diagnosis, triage, time standards and engagement of people with lived experience. The new pathway has been adopted by the Scottish Government. The pathway and associated documentation are freely available online for use by others.

scholarly journals Reflective insights from developing a palliative care children and young people’s advisory group

2021 ◽  
pp. 026921632097603
Author(s):  
Anna Roach ◽  
Debbie Braybrook ◽  
Steve Marshall
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Health Research ◽  
School Health ◽  
Public Involvement ◽  
After School ◽  
Advisory Group ◽  
Research Projects ◽  
Children And Young People ◽  
Care Research

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

scholarly journals Measurement invariance of the short Warwick-Edinburgh Mental Wellbeing Scale and latent mean differences (SWEMWBS) in young people by current care status

2021 ◽  
Author(s):  
Rebecca Anthony ◽  
Graham Moore ◽  
Nicholas Page ◽  
Gillian Hewitt ◽  
Simon Murphy ◽  
...  
Keyword(s):  
Young People ◽  
Measurement Invariance ◽  
Assessment Tools ◽  
Research Network ◽  
Mental Wellbeing ◽  
Short Version ◽  
Living Situation ◽  
Children And Young People ◽  
Mean Differences ◽  
Children In Care

Abstract Purpose Studying mental wellbeing requires the use of reliable, valid, and practical assessment tools, such as the Short version of the Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS). Research on the mental wellbeing of children in care is sparse. The current study aims to: (1) examine the unidimensionality of SWEMWBS; (2) assess measurement invariance of SWEMWBS across children and young people in care compared to their peers not in care; and (3) investigate the latent factor mean differences between care status groups. Methods We used data from the 2017 School Health Research Network Student Health and Wellbeing (SHW) survey, completed by 103,971 students in years 7 to 11 from 193 secondary schools in Wales. The final data include a total of 2,795 participants (46% boys), which includes all children in care and a sub-sample of children not in care who completed the SWEMWBS scale fully and answered questions about their living situation. Results Confirmatory factor analysis supported the unidimensionality of SWEMWBS. The SWEMWBS is invariant across groups of young people in foster, residential and kinship care compared to children and young people not in care at configural, metric and scalar levels. Findings from latent mean comparisons showed that young people in care reported lower mental wellbeing than their peers, with those in residential care reporting the lowest scores. Conclusions Findings suggest that SWEMWBS is a valid scale for measuring differences in mental wellbeing for young people in care similar to the population.

scholarly journals Children and young people's experiences of living with developmental coordination disorder/dyspraxia: study protocol for a qualitative evidence synthesis

2020 ◽  
Vol 2 ◽  
pp. 28
Author(s):  
Áine O'Dea ◽  
Susan Coote ◽  
Katie Robinson
Keyword(s):  
Young People ◽  
Developmental Coordination Disorder ◽  
Research Policy ◽  
Evidence Synthesis ◽  
Small Body ◽  
Complex Interventions ◽  
Qualitative Evidence Synthesis ◽  
Children And Young People ◽  
Qualitative Evidence ◽  
Coordination Disorder

Background Children with developmental coordination disorder (DCD) face significant challenges to deal with everyday activities due to underlying motor proficiency difficulties. These challenges affect children and young people’s participation; that is, involvement in daily life situations. A small body of qualitative research  has explored the experiences of children and young people with DCD from their own perspective. Therfore, understanding what it is like to live with DCD is not well conceptualised in the literature. There is a pressing need to synthesise the findings of discrete qualitative studies to advance the conceptual understanding of living with DCD, to inform health service delivery and the development and implementation of complex interventions. Aim This study aims to systematically review and synthesise qualitative literature regarding children and young people’s experiences and views of everyday life and living with DCD. Methods The method of qualitative evidence synthesis that will be followed in this review is a meta-ethnography. The eMERGe and PRISMA reporting guidelines will be adhered to. Ten databases will be searched; Academic Search Complete, AMED, CINAHL, ERIC, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science. The Joanna Briggs Institute Checklist will be used by two independent reviewers to appraise all included papers. Discussion The findings of this meta-ethnography will endeavour to inform future research, policy and practice. In particular, the results will help to inform the design of future complex interventions to meet the needs of children and young people with DCD. Dissemination will involve the publication of the results in a peer-reviewed journal. Increasingly researchers and policymakers are calling for services to be informed by the perspective and voice of children with DCD. Therefore, a policy brief will be published so that the findings are widely available. Registration: PROSPERO registration number CRD42019129178; registered on 09 July 2019.

scholarly journals Protocol for the Process Evaluation of the Online Remote Behavioural Intervention for Tics (ORBIT) Randomised Controlled Trial for children and young people

2019 ◽  
Author(s):  
Kareem Khan ◽  
Chris Hollis ◽  
Charlotte L Hall ◽  
E Bethan Davies ◽  
David Mataix-Cols ◽  
...  
Keyword(s):  
Young People ◽  
Process Evaluation ◽  
Qualitative Data ◽  
Controlled Trial ◽  
Clinical Care ◽  
Complex Interventions ◽  
Behavioural Intervention ◽  
Main Trial ◽  
Children And Young People ◽  
Standard Clinical Practice

Abstract Background Process evaluations are an important component in the interpretation and understanding of outcomes in trials. The ‘Online Remote Behavioural Intervention for Tics’ (ORBIT) study is a randomized controlled trial evaluating the effectiveness of an internet delivered behavioural intervention (called BIP TIC) compared to an internet delivered education program aimed at children and young people with tics. A process evaluation will be undertaken alongside the main trial to determine precisely how the behavioural intervention works and ascertain whether, and if so, how, the intervention could be successfully implemented in standard clinical practice. This protocol paper describes the rationale, aims, and methodology of the ORBIT trial process evaluation. Methods The process evaluation will use a mixed-methods design following the UK Medical Research Council’s 2015 guidelines, comprising of both quantitative and qualitative data collection. This will include: analyzing data usage of participants in the intervention arm; purposively sampled, semi-structured interviews of parents and children, therapists and supervisors, and referring clinicians of the ORBIT trial, as well as analysis of qualitative comments input into the online therapy platform by participants at the end of treatment. Qualitative data will be analyzed thematically. Quantitative and qualitative data will be integrated in a triangulation approach, to provide an understanding of how the intervention works, and what resources are needed for effective implementation, uptake and use in routine clinical care. Discussion This process evaluation will explore the experiences of participants, therapists and supervisors, and referring clinicians of a complex online intervention. By contextualising trial efficacy results, this will help understand how and if the intervention worked and what may be required to sustain the implementation of the treatment long-term. The findings will also aid in our understanding of factors that can affect the success of complex interventions. This will enable future researchers developing online behavioural interventions for children and young people with mental health and neurological disorders to gain invaluable information from this process evaluation.

scholarly journals “A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Nichola Abrehart ◽  
◽  
Kate Frost ◽  
Roy Harris ◽  
Andrew Wragg ◽  
...  
Keyword(s):  
Young People ◽  
Medical Device ◽  
Public Involvement ◽  
Knowledge Exchange ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Main Body ◽  
Research Project ◽  
Children And Young People ◽  
Conducting Research

Abstract Background There is often a great urgency to be inclusive when conducting research and to focus efforts with groups and communities that can be referred to as marginalised. This is especially the case in research concerning medical devices aimed at children and young people (CYP). Although involvement methodology has developed over the last two decades, it can be challenging to involve and engage CYP with confidence and clarity of purpose. Main body Our aim was to provide a reflective narrative account of the involvement of CYP, over a period of 5 years, in a research project from conception of a new paediatric medical device through to practical application. We explored a model of patient and public involvement (PPI) through the Nottingham Young Persons Advisory Group (YPAG), part of the National Institute for Health Research (NIHR) GenerationR Alliance, in a NIHR funded research project. The YPAG designed and created a model of the human gut, co-designed the Transicap™ mini-capsules and their packaging, co-produced patient information sheets, came up with the idea to disseminate through a project website and co-wrote and created animation videos. The YPAG involvement continued through the writing and award of the follow-on research grant (MAGIC2). During this process the YPAG modified the clinical study protocol insisting that all participants in the control arm were given the imaging test results as well, save for a delayed reading compared to the intervention arm. Conclusion Involvement of the YPAG over the last 5 years, led to the development of a mutually beneficial partnership, enabling genuine knowledge exchange between researchers and CYP. This influenced the design, plans and actions of the MAGIC study and well into the subsequent MAGIC2 follow-on project. Moreover, these involvement models applied within a feasibility study setting, have enhanced the realism and pragmatism of the study, contributing to the project’s overall success.

scholarly journals 366 The ED young person’s wellbeing guide – a novel approach to psychosocial risk assessing children and young people in the emergency department

2020 ◽  
Vol 37 (12) ◽  
pp. 850.1-850
Author(s):  
Lauren Fraser ◽  
Ayia Al-Asadi
Keyword(s):  
Young People ◽  
Lived Experience ◽  
Youth Violence ◽  
Young Person ◽  
Psychosocial Risk ◽  
Iterative Approach ◽  
Children And Young People ◽  
Novel Approach ◽  
Charitable Organisation ◽  
Sources Of Support

Aims/Objectives/BackgroundThe 2019/20 RCEM National QIP ‘Care of Children in the ED’ recommends use of a recognised tool (eg HEEADSSS) to psychosocial risk assess 12–17 year olds seen in the ED. Northwick Park’s ED team collaborated with the Young Harrow Foundation (YHF), a local charitable organisation, to coproduce the ED Young Person’s Wellbeing Guide with the aim of addressing this standard whilst also meeting the needs of ED staff and the children and young people (CYP) that we care for.Methods/DesignYHF’s Change Champions, a dynamic group of local 15–25 year olds with lived experience of areas such as youth violence and mental health, worked with the ED team and fed back that they wouldn’t necessarily expect (or welcome) ED staff enquiring about such personal topics (particularly if presenting with an unrelated issue) but valued access to reliable support and advice for themselves or their peers. ED staff, similarly, often felt awkward approaching such sensitive subjects with CYP if the presentation was with a seemingly unrelated complaint or when departmental pressures prohibited development of a meaningful doctor-patient rapport. The Wellbeing Guide was therefore coproduced to provide CYP with links to trusted sources of support (based on the HEEADSSS categories) as well as allowing the ED clinician to broach such conversations by asking whether any issues raised in the Guide resonated with the young person and whether further support or advice was required.Abstract 366 Figure 1Results/ConclusionsThe Wellbeing Guide will be piloted, and offered to all 12–17yo’s attending the ED, in the next few weeks. Using an iterative approach the document will be further developed through feedback from CYP. We are also developing a complementary document containing links to resources for parents concerned about their child. We aspire to an online version of both documents, accessible via the Trust’s website, in the next few months.

scholarly journals Where is My Sweet Potato? Creating Change through Forum Theatre with Street Children in Burundi

2020 ◽  
Vol 14 (1-2) ◽  
Author(s):  
Karin Cooper
Keyword(s):  
Young People ◽  
Lived Experience ◽  
Street Children ◽  
Theatre Of The Oppressed ◽  
Collective Consciousness ◽  
Community Based ◽  
Children And Young People ◽  
Forum Theatre ◽  
Interactive Theatre ◽  
Opening Up

ABSTRACT This paper examines the innovative use of Boal’s Theatre of the Oppressed (Forum Theatre) with a group of 30 street children and young people in East Africa. Drawing upon a project in Burundi, this paper reveals how participants utilized the process of performance making through Forum Theatre as a platform to make visible problems in their lives, and a vehicle to challenge inequalities, abuse and violence. The authors demonstrate how the adoption of this methodology raised questions about interactive theatre as creative activism and a tool for opening up possibilities for dialogue with a community-based audience. This paper illuminates ways in which street children, explored, examined and problematized their lived experience, through the creative lens of Forum Theatre. It argues that this methodology generated a sense of collective consciousness, through which the children and young people created personal and social change, which extended beyond the life of the project.

Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges

2018 ◽  
Vol 32 (4) ◽  
pp. 357-362 ◽  
Author(s):  
Segolene Gaillard ◽  
Salma Malik ◽  
Jenny Preston ◽  
Begonya Nafria Escalera ◽  
Pamela Dicks ◽  
...  
Keyword(s):  
Young People ◽  
Clinical Research ◽  
Advisory Group ◽  
Children And Young People

scholarly journals Protocol for the Process Evaluation of the Online Remote Behavioural Intervention for Tics (ORBIT) Randomised Controlled Trial for children and young people

2019 ◽  
Author(s):  
Kareem Khan ◽  
Chris Hollis ◽  
Charlotte L Hall ◽  
E Bethan Davies ◽  
David Mataix-Cols ◽  
...  
Keyword(s):  
Young People ◽  
Process Evaluation ◽  
Qualitative Data ◽  
Controlled Trial ◽  
Clinical Care ◽  
Complex Interventions ◽  
Behavioural Intervention ◽  
Main Trial ◽  
Children And Young People ◽  
Standard Clinical Practice

Abstract Background Process evaluations are an important component in the interpretation and understanding of outcomes in trials. The ‘Online Remote Behavioural Intervention for Tics’ (ORBIT) study is a randomized controlled trial evaluating the effectiveness of an internet delivered behavioural intervention (called BIP TIC) compared to an internet delivered education program aimed at children and young people with tics. A process evaluation will be undertaken alongside the main trial to determine precisely how the behavioural intervention works and ascertain whether, and if so, how, the intervention could be successfully implemented in standard clinical practice. This protocol paper describes the rationale, aims, and methodology of the ORBIT trial process evaluation. Methods The process evaluation will use a mixed-methods design following the UK Medical Research Council’s 2015 guidelines, comprising of both quantitative and qualitative data collection. This will include: analyzing data usage of participants in the intervention arm; purposively sampled, semi-structured interviews of parents and children, therapists and supervisors, and referring clinicians of the ORBIT trial, as well as analysis of qualitative comments input into the online therapy platform by participants at the end of treatment. Qualitative data will be analyzed thematically. Quantitative and qualitative data will be integrated in a triangulation approach, to provide an understanding of how the intervention works, and what resources are needed for effective implementation, uptake and use in routine clinical care. Discussion This process evaluation will explore the experiences of participants, therapists and supervisors, and referring clinicians of a complex online intervention. By contextualising trial efficacy results, this will help understand how and if the intervention worked and what may be required to sustain the implementation of the treatment long-term. The findings will also aid in our understanding of factors that can affect the success of complex interventions. This will enable future researchers developing online behavioural interventions for children and young people with mental health and neurological disorders to gain invaluable information from this process evaluation.

scholarly journals HappyMaps: a single hub of resources on children and young people's mental health for parents and professionals

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S26-S26
Author(s):  
Georgina Griffiths ◽  
Jasmin Krischer ◽  
Cara Roberts-Collins ◽  
Elaine Lunts
Keyword(s):  
Mental Health ◽  
Young People ◽  
Mental Health Problems ◽  
Service Providers ◽  
Waiting Times ◽  
Health Issues ◽  
Children And Young People ◽  
Self Help ◽  
The Uk ◽  
Future Work

AimsMental health issues in children and young people are a growing concern and the benefits of intervening early are well established for many mental health problems, but existing Child and Adolescent Mental Health Services (CAMHS) are often over-stretched with variable waiting times for assessment. Many children also have problems which do not reach the referral thresholds and parents are left to find advice elsewhere. Existing resources for parents are scattered across many different websites and therefore difficult to access both for parents and professionals working with young people. With this in mind, and in consultation with CAMHS Bristol and many other stake-holders (including parents themselves) we designed an easily navigable website intended as a single comprehensive portal of resources for parents of children with mental illness and difficulties.MethodQualitative research methods were used to gather information about how the website should be designed and also to gather feedback once the website was live. Focus groups were performed with parents/carers and stakeholder discussions took place to inform the design of the website. Once the website was live, surveys via a Survey Monkey link on the website and Google Analytics were used to evaluate the website.Result60,000 users have utilised the website since the launch in March 2019. Two thirds of users are women and one third are men. Most popular webpages that are visited are primary, secondary, help-in -a-crisis and self-help for young people. Positive feedback has been collected from both parents/carers and service providers. The website has continued to develop and is now a registered charity and has received community lottery funding, which will allow for further evaluation and developments.ConclusionHappyMaps has been successful in providing a single hub of information for parents/carers, GPs, CAMHS workers and teachers. Future work involves evaluating the website and attracting interest from other CAMHS teams and professionals in other areas of the UK so that they can create HappyMaps sections for their populations.

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