Reflections, impact and recommendations of a co‐produced qualitative study with young people who have experience of mental health difficulties

Dewa, Lindsay H.; Lawrence‐Jones, Anna; Crandell, Caroline; Jaques, Jack; Pickles, Katy; Lavelle, Mary; Pappa, Sofia; Aylin, Paul

doi:10.1111/hex.13088

Cited by 47 publications

(122 citation statements)

References 17 publications

(36 reference statements)

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“…"Co-production" is not a quick process [31]. Planning, resourcing, staffing, executing PPI meetings and building rapport with the members is timeintensive.…”

Section: Discussionmentioning

confidence: 99%

“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)

Abrehart¹,

Frost

Harris

et al. 2021

Res Involv Engagem

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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.

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“…"Co-production" is not a quick process [31]. Planning, resourcing, staffing, executing PPI meetings and building rapport with the members is timeintensive.…”

Section: Discussionmentioning

confidence: 99%

“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)

Abrehart¹,

Frost

Harris

et al. 2021

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

“…Member consistency has been identified as a challenge in other projects due to factors such as unavailability and perceived demands of the meetings (53). Similarly, a recent reflection on co-designing a research project with young people highlighted that although strong relationships were formed with young people who were involved in data collection and analysis were, it was harder to build such relationships with young people not involved in these areas of the project due to their role activity being intermittent (45). The delay between the Actissist proof-of-concept RCT finishing and main RCT starting made it difficult to maintain member consistency, resulting in different members taking part in the proof-of-concept RCT ERG and main RCT ERG meetings.…”

Section: Limitationsmentioning

confidence: 99%

Developing a Theory-Informed Smartphone App for Early Psychosis: Learning Points From a Multidisciplinary Collaboration

et al. 2020

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Background: Actissist is a smartphone app designed to deliver an intervention grounded in cognitive behavior therapy for early psychosis. Actissist was developed by a multidisciplinary team of academics, clinicians, experts by experience and software engineers. Actissist has been tested in two trials, the first a proof-of-concept trial where Actissist was safe, acceptable and feasible, the second, a powered randomized controlled trial.Objective: This article describes how our multidisciplinary team designed and developed Actissist. This article describes: (i) how Actissist was informed by initial qualitative interviews and focus groups and an expert reference group; (ii) refinements made to the app based on ongoing user feedback; (iii) successes and challenges encountered; and (iv) learning points and recommendations for involving stakeholders in digital health interventions.Methods: Expert reference group meetings informed the development of Actissist and design of subsequent trials, which included individuals with lived experience of psychosis, clinicians, academics, computer scientists and software engineers. Person-centered stakeholder involvement was promoted using focus groups and qualitative interviews prior to the development of the app, which informed version one of Actissist. Interviews were carried out with participants who had used Actissist. Two further versions of Actissist were developed following additional rounds of testing.Results: Multidisciplinary working throughout the Actissist project led to the development, inclusion and improvement of the app design and content. These changes and features included non-directive and compassionate content, co-designed recovery videos, relaxation exercises, psychoeducation material, ability to “favorite” areas of the app that users found helpful, and goal-setting. Challenges to collaborative working included discrepancies between what stakeholders want and what is technically possible to deliver, resource pressures, trying to deliver desired features within the boundaries of fundamental trial design considerations, and power imbalances associated with multidisciplinary working.Conclusions: The involvement of stakeholders in the design and development and delivery of Actissist has been fundamental to our development approach. Through this collaborative process, we have identified different perspectives and ideas that would have not been generated by the research team alone.Clinical Trial Registrations: Proof-of-concept trial: http://www.isrctn.com/ISRCTN34966555Fully-powered randomized controlled trial: https://www.isrctn.com/ISRCTN76986679

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“…Young people can participate directly in research as peer researchers, giving them new skills and simultaneously enhancing access to seldom-heard groups. 16 More equitable relationships are key; communities will engage if benefits are mutual. Careful attention must be paid to the human and financial resources needed for engagement and providing neutral physical and virtual spaces where communities, health professionals and researchers can work together.…”

Section: How Can We Promote Sustainable Engagement With Parents and Cmentioning

confidence: 99%

Working with communities to mitigate the collateral impact of COVID-19 on children and young people

Coughlan

Soni

Ghouneim

et al. 2020

bmjpo

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Reflections, impact and recommendations of a co‐produced qualitative study with young people who have experience of mental health difficulties

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 47 publications

References 17 publications

“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)

“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)

Developing a Theory-Informed Smartphone App for Early Psychosis: Learning Points From a Multidisciplinary Collaboration

Working with communities to mitigate the collateral impact of COVID-19 on children and young people

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