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Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement

Taylor, Rachel M, Whelan, Jeremy S, Gibson, Faith, Morgan, Sue and Fern, Lorna A (2018) Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement Research Involvement and Engagement, 4 (50).

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Abstract

Background

Young people with cancer, broadly those aged 13-24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as ‘vulnerable’, ‘hard to reach’ and ‘difficult to engage’, and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study ‘BRIGHTLIGHT’, we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination.

Methods

We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same.

Results

In the ten years since the BRIGHTLIGHT feasibility work began we have involved more than 1,200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement.

Conclusions

Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences > School of Health Sciences
Authors :
NameEmailORCID
Taylor, Rachel M
Whelan, Jeremy S
Gibson, Faithf.gibson@surrey.ac.uk
Morgan, Sue
Fern, Lorna A
Date : 27 December 2018
DOI : 10.1186/s40900-018-0135-x
Copyright Disclaimer : © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Uncontrolled Keywords : Adolescents, young adults, teenagers, cancer, recruitment, retention, 69 dissemination, BRIGHTLIGHT, patient and public involvement, consumers
Depositing User : Melanie Hughes
Date Deposited : 29 Nov 2018 13:18
Last Modified : 19 Mar 2019 10:12
URI: http://epubs.surrey.ac.uk/id/eprint/849955

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