scholarly journals Involving young people in drug and alcohol research

2018 ◽  
Vol 18 (1) ◽  
pp. 28-38 ◽  
Author(s):  
Louca-Mai Brady ◽  
Lorna Templeton ◽  
Paul Toner ◽  
Judith Watson ◽  
David Evans ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Services Research ◽  
Apparent Contradiction ◽  
Content Type ◽  
Drug Problems ◽  
The Impact ◽  
Drug And Alcohol

Purpose Young people’s involvement should lead to research, and ultimately services, that better reflect young people’s priorities and concerns. Young people with a history of treatment for alcohol and/or drug problems were actively involved in the youth social behaviour and network therapy study. The purpose of this paper is to explore the impact of that involvement on the study and what was learnt about involving young people in drug and alcohol research. Design/methodology/approach The initial plan was to form a young people’s advisory group (YPAG), but when this proved problematic the study explored alternative approaches in collaboration with researchers and young people. Input from 17 young people informed all key elements of the study. Findings Involvement of young people needs to be dynamic and flexible, with sensitivity to their personal experiences. Engagement with services was crucial both in recruiting young people and supporting their ongoing engagement. This research identified a need to critically reflect on the extent to which rhetorics of participation and involvement give rise to effective and meaningful involvement for young service users. It also highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. Research limitations/implications This research highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. It highlights the danger of young people in drug and alcohol research being unintentionally disaffected from involvement through conventional approaches and instead suggests ways in which young people could be involved in influencing if and how they participate in research. Practical implications There is an apparent contradiction between dominant discourses and cultures of health services research (including patient and public involvement) that often do not sit easily with ideas of co-production and young people-centred involvement. This paper provides an alternative approach to involvement of young people that can help to enable more meaningful and effective involvement. Originality/value The flexible and young people-centred model for involvement which emerged from this work provides a template for a different approach. This may be particularly useful for those who find current practice, such as YPAG, inaccessible.

scholarly journals Patient and public involvement and the implementation of research into practice

2016 ◽  
Vol 11 (4) ◽  
pp. 256-267 ◽  
Author(s):  
Steve Gillard ◽  
Rhiannon Foster ◽  
Constantina Papoulias
Keyword(s):  
Service Delivery ◽  
Conceptual Model ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Successful Implementation ◽  
Science Literature ◽  
Retrospective Case ◽  
Content Type ◽  
The Impact

Purpose Patient and public involvement (PPI) is increasingly central to the delivery of health services research. However, it has proved challenging to evaluate the impact of PPI on the implementation of research into clinical practice and health service delivery. The purpose of this paper is to develop and test a conceptual model explaining how PPI in the research process might impact on implementation. Design/methodology/approach A scoping review of knowledge translation and implementation science literature was performed to develop a conceptual model of the impact of PPI in research on implementation. A retrospective case study of a research project was used to illustrate the model. Findings The authors identified five domains in which PPI can impact on the implementation of research into practice. The review demonstrated that successful implementation depends on developing relational models of knowledge production, valuing experiential knowledge, engaging in collaborative practice, making use of knowledge brokers or tools for knowledge facilitation and embedding these factors into the implementation context. In the case study the authors were able to find examples that illustrated each of the five domains of the model. Originality/value The paper builds on existing endeavour to evaluate the impact of PPI in research, demonstrating that it is possible to model, conceptually, the processes whereby PPI in research might impact on practice and service delivery. By illustrating those processes through the exemplar case the authors also demonstrate the potential for the model to be “operationalised”, allowing the impacts, on practice, of PPI in research to be systematically and directly evidenced.

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 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.

scholarly journals Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

2020 ◽  
Author(s):  
Shoba Dawson ◽  
Angela Ruddock ◽  
Veena Parmar ◽  
Rebecca Morris ◽  
Sudeh Cheraghi-sohi ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Services Research ◽  
Research Project ◽  
Doctoral Research ◽  
Research Cycle ◽  
The Uk ◽  
Personal Reflections ◽  
The Impact

Abstract Background: Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers’ and PPI contributors’ personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people specifically in doctoral research.Methods: A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle. Results: Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience. Conclusions: This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

scholarly journals Developing involvement during a programme of recovery research

2016 ◽  
Vol 11 (4) ◽  
pp. 244-255 ◽  
Author(s):  
Mike Slade ◽  
Premila Trivedi ◽  
Ruth Chandler ◽  
Mary Leamy
Keyword(s):  
Lived Experience ◽  
Design Methodology ◽  
Public Involvement ◽  
Empirical Evaluation ◽  
Research Programme ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Content Type ◽  
Practical Implications ◽  
Practical Recommendations

Purpose The purpose of this paper is to consider the process of working with a Lived Experience Advisory Group (LEAP) and its outcomes in REFOCUS, a large five-year programme of recovery research. Design/methodology/approach Narrative reflections on the experience of working with LEAP were collected from five members and the chair of LEAP, two REFOCUS researchers and the principal investigator. These were synthesised to show both the process and outcomes of LEAP involvement in REFOCUS, and how involvement evolved organically over time. Findings Individual reflective accounts showed how working with LEAP impacted (to a greater or lesser extent) on each individual involved in the process, providing new insights and influencing, to varying degrees, the way in which they then worked with LEAP. Synthesis of the reflections showed how these changes impacted organically on LEAP’s process of involvement, with a shift in LEAP’s role from being purely consultative/advisory towards one which was much more about co-production, with LEAP pro-actively contributing to some aspects of REFOCUS in the later stages of the study. Practical implications The authors stress the importance of considering process as well as outcomes in patient and public involvement, and make practical recommendations for improving both in future programmes of research. Originality/value This is the first empirical evaluation of user and carer involvement and its development during a large recovery research programme.

scholarly journals Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

2019 ◽  
Author(s):  
Shoba Dawson ◽  
Angela Ruddock ◽  
Veena Parmar ◽  
Rebecca Morris ◽  
Sudeh Cheraghi-sohi ◽  
...  
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Services Research ◽  
Research Project ◽  
Doctoral Research ◽  
The Uk ◽  
The Impact

Abstract Background Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This paper aims to highlight how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people in doctoral research specifically, but also health services research generally.Methods A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle.Results Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience.Conclusions This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

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 Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Femke van Schelven ◽  
Eline van der Meulen ◽  
Noortje Kroeze ◽  
Marjolijn Ketelaar ◽  
Hennie Boeije
Keyword(s):  
Young People ◽  
Chronic Condition ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
English Summary ◽  
Lessons Learned ◽  
Project Teams ◽  
Data Sources ◽  
Future Prospects ◽  
Roles And Responsibilities

Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

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