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 “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 Patient and Public Involvement in Youth Mental Health Research: Protocol for a Systematic Review of Practices and Impact

2021 ◽  
Vol 12 ◽  
Author(s):  
Célia M. D. Sales ◽  
Filipa Martins ◽  
Marisa M. Alves ◽  
Sara Carletto ◽  
Sonia Conejo-Cerón ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Systematic Reviews ◽  
Health Research ◽  
Public Involvement ◽  
Relevant Information ◽  
Patient And Public Involvement ◽  
Mental Health Research ◽  
Children And Young People ◽  
Meta Analyses

Various health settings have advocated for involving patients and members of the public (PPI) in research as a means to increase quality and relevance of the produced knowledge. However, youth PPI has been an understudied area. This protocol paper describes a new project that aims to summarize what is known about PPI with young people in mental health research. In line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses Statement guidelines we will identify and appraise suitable articles and extract and synthesize relevant information including at least two reviewers at each stage of the process. Results will be presented in two systematic reviews that will describe (a) how youth PPI has been conducted (Review1) and (b) what impact youth PPI had on the subsequent research and on stakeholders (Review2). To our knowledge, this is the first set of reviews that uses a critical appraisal tool, which is co-developed with children and young people. Findings from this project will provide valuable insights and set out the key steps to adopting adequate PPI methods when involving children and young people in mental health research.

scholarly journals An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research

2021 ◽  
pp. 026921632199930
Author(s):  
Sarah J Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Dena Khan ◽  
Mohini Samani ◽  
...  
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Public Involvement ◽  
Research Study ◽  
Patient And Public Involvement ◽  
Subject Area ◽  
Research Network ◽  
Care Research ◽  
Paediatric Palliative Care ◽  
The Impact

Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children’s hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

scholarly journals Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review

PLoS ONE ◽  
2021 ◽  
Vol 16 (6) ◽  
pp. e0252774
Author(s):  
Alison Rouncefield-Swales ◽  
Jane Harris ◽  
Bernie Carter ◽  
Lucy Bray ◽  
Toni Bewley ◽  
...  
Keyword(s):  
Young People ◽  
Scoping Review ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Children And Young People ◽  
Related Research ◽  
Health Related Research ◽  
Health Related ◽  
The Impact

Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Methods Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. Main findings A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited. Conclusions Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

Opioid Use in Palliative Care of Children and Young People with Cancer

2008 ◽  
Vol 152 (1) ◽  
pp. 39-44 ◽  
Author(s):  
Martin Hewitt ◽  
Ann Goldman ◽  
Gary S. Collins ◽  
Margaret Childs ◽  
Richard Hain
Keyword(s):  
Palliative Care ◽  
Young People ◽  
Opioid Use ◽  
Children And Young People

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.

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