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      BRIGHTLIGHT researchers as ‘dramaturgs’: creating There is a Light from complex research data

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          Abstract

          Background

          BRIGHTLIGHT is a national evaluation of cancer services for young people aged 13–24 years in England. It is a mixed methods study with six interlinked studies aiming to answer the question: do specialist cancer services for teenagers and young adults add value? http://www.brightlightstudy.com/. Young people have been integral to study development and management, working as co-researchers, consultants and collaborators throughout. We aimed to share results in a way that was meaningful to young people, the public, and multidisciplinary professionals. This paper reports the development of ‘ There is a Light: BRIGHTLIGHT’, a theatrical interpretation of study results by young people, and offers insight into the impact on the cast, researchers and audiences.

          Methods

          The BRIGHTLIGHT team collaborated with Contact Young Company, a youth theatre group in Manchester. Twenty members of Contact Young Company and four young people with cancer worked together over an eight-week period during which BRIGHTLIGHT results were shared along with explanations of cancer, healthcare policy and models of care in interactive workshops. Through their interpretation, the cast developed the script for the performance. The impact of the process and performance on the cast was evaluated through video diaries. The research team completed reflective diaries and audiences completed a survey.

          Results

          ‘There is a Light’ contained five acts and lasted just over an hour. It played 11 performances in six cities in the United Kingdom, to approximately 1377 people. After nine performances, a 30-min talk-back between members of the cast, creative team, an expert healthcare professional, and the audience was conducted, which was attended by at least half the audience. Analysis of cast diaries identified six themes: initial anxieties; personal development; connections; cancer in young people; personal impact; interacting with professionals. The cast developed strong trusting relationships with the team. Professionals stated they felt part of the process rather than sitting on the periphery sharing results. Both professional and lay audiences described the performance as meaningful and understandable. Feedback was particularly positive from those who had experienced cancer themselves.

          Conclusions

          Using theatre to present research enabled BRIGHTLIGHT results to be accessible to a larger, more diverse audience.

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          Most cited references23

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          Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?

          Plain English summary There have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to poor patient outcomes. In addition, there are also concerns that research is being undertaken that does not reflects the realities or needs of those using healthcare services, and that the use of research findings in practice is slow. As such, shared approaches to research, such as integrated knowledge translation, are being used. Integrated knowledge translation (IKT) is a research approach that brings together researchers, along with other stakeholders that have knowledge about a particular healthcare issue. Stakeholders may include healthcare providers and policy-makers. More recently, there has been a growing awareness of the need to include patients and members of the public within research processes. These collaborative and patient-oriented research approaches are seen as a way to develop research that tackles ongoing gaps in practice and reflect the insights, needs and priorities of those most affected by health research outcomes. Despite great support, little is known about how these major research approaches are connected, or how they may bring about improvements in the development and use of research evidence. In this paper, we examine how IKT and patient engagement processes are linked, as well as exploring where differences exist. Through this, we highlight opportunities for greater patient engagement in IKT research and to identify areas that need to be understood further. Abstract Healthcare organizations across the world are being increasingly challenged to develop and implement services that are evidence-based and bring about improvement in patient and health service outcomes. Despite an increasing emphasis upon evidence-based practice, large variations in practice remain and gaps pervade in the creation and application of knowledge that improves outcomes. More collaborative models of health research have emerged over recent years, including integrated knowledge translation (IKT), whereby partnerships with key knowledge users are developed to enhance the responsiveness and application of the findings. Likewise, the meaningful engagement of patients, in addition to the inclusion of patient-reported outcomes and priorities, has been hailed as another mechanism to improve the relevance, impact and efficiency of research. Collectively, both IKT and patient engagement processes provide a vehicle to support research that can address health disparities and improve the delivery of effective and responsive healthcare services. However, the evidence to support their impact is limited and while these approaches are inextricably connected through their engagement focus, it is unclear how IKT and patient engagement processes are linked conceptually, theoretically, and practically. In this paper, we will begin to critically examine some of the linkages and tensions that exist between IKT and patient-engagement for research and will examine potential opportunities for IKT researchers as they navigate and enact meaningful partnerships with patients and the public.
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            Staging data: theatre as a tool for analysis and knowledge transfer in health research.

            Over the past several decades, researchers have taken an interest in theatre as a unique method of analysing data and translating findings. Because of its ability to communicate research findings in an emotive and embodied manner, theatre holds particular potential for health research, which often engages complex questions of the human condition. In order to evaluate the research potential of theatre, this article critically examines examples of evaluated health research studies that have used theatre for the purposes of data analysis or translation. We examine these studies from two perspectives. First, the literature is divided and categorized into four theatre genres: (1) non-theatrical performances; (2) ethnodramas, which can be interactive or non-interactive; (3) theatrical research-based performances; and (4) fictional theatrical performances. This categorization highlights the importance of these genres of theatre and provides an analysis of the benefits and disadvantages of each, thus providing insight into how theatre may be most effectively utilized in health research. Second, we explore the efficacy of using theatre for the purposes of data analysis and knowledge transfer, and critically examine potential approaches to the evaluation of such endeavours.
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              Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer

              Objectives To provide international consensus on the competencies required by healthcare professionals in order to provide specialist care for teenagers and young adults (TYA) with cancer. Design Modified e-Delphi survey. Setting International, multicentre study. Participants Experts were defined as professionals having worked in TYA cancer care for more than 12 months. They were identified through publications and professional organisations. Methods Round 1, developed from a previous qualitative study, included 87 closed-ended questions with responses on a nine-point Likert scale and further open-ended responses to identify other skills, knowledge and attitudes. Round 2 contained only items with no consensus in round 1 and suggestions of additional items of competency. Consensus was defined as a median score ranging from 7 to 9 and strength of agreement using mean absolute deviation of the median. Results A total of 179 registered to be members of the expert panel; valid responses were available from 158 (88%) in round 1 and 136/158 (86%) in round 2. The majority of participants were nurses (35%) or doctors (39%) from Europe (55%) or North America (35%). All 87 items in round 1 reached consensus with an additional 15 items identified for round 2, which also reached consensus. The strength of agreement was mostly high for statements. The areas of competence rated most important were agreed to be: ‘Identify the impact of disease on young people's life’ (skill), ‘Know about side effects of treatment and how this might be different to those experienced by children or older adults’ (knowledge), ‘Honesty’ (attitude) and ‘Listen to young people's concerns’ (aspect of communication). Conclusions Given the high degree of consensus, this list of competencies should influence education curriculum, professional development and inform workforce planning. Variation in strength of agreement for some competencies between professional groups should be explored further in pursuit of effective multidisciplinary team working.
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                Author and article information

                Contributors
                rtaylor13@nhs.net
                blobelization@gmail.com
                keishathompson@contactmcr.coml
                aonashile@gmail.com
                mark.croasdale@hotmail.co.uk
                nathaniel.j.hall@googlemail.com
                f.gibson@surrey.ac.uk , faith.gibson@gosh.nhs.uk
                David.Wright@christie.nhs.uk
                suemorgan@nhs.net
                Jeremy.whelan@nhs.net
                lorna.fern@nhs.net
                Journal
                Res Involv Engagem
                Res Involv Engagem
                Research Involvement and Engagement
                BioMed Central (London )
                2056-7529
                10 August 2020
                10 August 2020
                2020
                : 6
                : 48
                Affiliations
                [1 ]GRID grid.52996.31, ISNI 0000 0000 8937 2257, Centre for Nurse, Midwife and Allied Health Profession Led Research (CNMAR), , University College London Hospitals NHS Foundation Trust, ; London, UK
                [2 ]GRID grid.450990.1, ISNI 0000 0004 0516 2201, Rose Bruford College, ; Sidcup, UK
                [3 ]GRID grid.417786.b, ISNI 0000 0004 0422 5274, The Royal Central School of Speech and Drama, ; London, UK
                [4 ]GRID grid.498139.e, Contact Young Company, Contact Theatre, ; Manchester, UK
                [5 ]GRID grid.5475.3, ISNI 0000 0004 0407 4824, School of Health Sciences, Faculty of Health and Medical Sciences, , Kate Granger Building, University of Surrey, ; Guildford, UK
                [6 ]GRID grid.424537.3, ISNI 0000 0004 5902 9895, Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), , Great Ormond Street Hospital for Children NHS Foundation Trust, ; London, UK
                [7 ]GRID grid.52996.31, ISNI 0000 0000 8937 2257, Cancer Division, , University College London Hospitals NHS Foundation Trust, ; London, UK
                [8 ]GRID grid.415720.5, ISNI 0000 0004 0399 8363, Top Floor Palatine Treatment Centre, , The Christie Hospital, ; Manchester, UK
                [9 ]GRID grid.415967.8, ISNI 0000 0000 9965 1030, Teenage and Young Adult Cancer Unit, , Leeds Teaching Hospitals NHS Trust, ; Leeds, UK
                Author information
                http://orcid.org/0000-0002-0853-0925
                Article
                222
                10.1186/s40900-020-00222-5
                7418195
                32789023
                25d9c0c1-5a65-4936-b0c7-3d85db629845
                © The Author(s) 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. 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 in a credit line to the data.

                History
                : 22 February 2020
                : 20 July 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100004440, Wellcome Trust;
                Award ID: 204162/Z/16/Z
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health Research;
                Award ID: RP-PG-1209-10013
                Award Recipient :
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                © The Author(s) 2020

                adolescents,young adults,teenagers,cancer,dissemination,brightlight,patient and public involvement,theatre,art

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