Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People

Taylor, Rachel; Aslam, Natasha; Lea, Sarah; Whelan, Jeremy; Fern, Lorna A

doi:10.1089/jayao.2016.0085

Cited by 16 publications

(18 citation statements)

References 28 publications

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“…The impact of giving young people control over the process (with guidance from the theatre team) could be seen from the benefits to the cast: young people without cancer learnt about cancer in young people; and those without cancer developed confidence in speaking to others about their experience with cancer, and greater acceptance of their cancer. The interesting impact was on the research team: we have extensive experience of collaborating and working with young people [ 26 – 28 , 31 , 37 ], but this was predominantly led by us. Young people and CYC led There is a Light and while we had some anxieties throughout the process which may have been due to the fact we let young people lead and control development of the performance, the respect we have given young people was reciprocated; young people valued the work we were doing and what we were hoping to achieve with our research.…”

Section: Discussionmentioning

confidence: 99%

“…BRIGHTLIGHT was developed with young people, and the Young Advisory Panel (YAP) have been core members of the research team throughout the study [ 26 ]. In addition to the six BRIGHTLIGHT studies, additional work has been undertaken with the YAP exploring recruitment to research [ 27 ], participant retention [ 28 ] and sexuality, relationships and body image [ 29 ]. The collective evidence, including the BRIGHTLIGHT feasibility work up to January 2017, was used to inform the content of the performance ‘ There is a Light: BRIGHTLIGHT’ .…”

Section: The Context: What Is Brightlight?mentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Discussionmentioning

confidence: 99%

Section: The Context: What Is Brightlight?mentioning

confidence: 99%

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

et al. 2020

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“…Through our reflections we have been able to present a narrative of evidence of the value of including young people as a central component of our research team. For example, the impact of the YAP retention interventions doubled our retention rates [15].…”

Section: Overall Reflections and Discussionmentioning

confidence: 99%

“…Through a series of participatory activities additional actions were suggested, which we implemented. This included personalised letters prior to each wave of survey administration, including a postcard with key results, enhanced methods of tracing young people and a revamped website [15]. Implementation of these changes was associated with an increase in wave 3 participation from 30 to 58%.…”

Section: What Is Brightlight?mentioning

confidence: 99%

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

et al. 2018

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Plain English summaryYoung people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to involve young people with cancer to work as co-researchers in the design of the largest ever study of young people with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners. We chronicle the key points of this 10-year journey, sharing our success, describing our challenges and the solutions we put in place; sharing also what worked and did not work. Here we share some of these experiences of involving young people in this research and offer some practical advice for those looking to do the same.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 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 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 ...

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“…8,10,11 Co-design also may lead to a greater number of ideas, leading to greater innovation. 12 A study by Taylor et al 13 found that involving adolescents in the design and optimization of retention strategies increased retention from 30% to 58% in a longitudinal study examining cancer care for young people.…”

Section: Introductionmentioning

confidence: 99%

Instagram as a tool for study engagement and community building among adolescents: A social media pilot study

et al. 2020

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Objective: Social media has been recognized as a promising tool for delivering health interventions and facilitating study recruitment. However, research is needed to understand how social media might be used to enhance the experiences of adolescent participants in ongoing studies. In a prospective cohort study addressing social and structural influences on health trajectories among 599 adolescents in a California agricultural community, we evaluated the effectiveness of and engagement with a human-centered, Instagram-based outreach campaign, with a focus on study retention, enhancement of participants' experiences, and increasing community awareness of the study.Methods: We adopted a youth-centered approach to design a three-month pilot study, which included participatory design sessions, a geo-targeted Instagram campaign, and in-person events at schools. We conducted pre-/post-pilot surveys with study participants, analyzed social media metrics, and collected process measures, such as study visit show rates.Results: After three months, the study Instagram account had 209 followers and 806 total engagements. Survey responses showed little change in study participants' attitudes about the study; most survey respondents agreed that the study is very important for the community (54% pre-pilot and 52% post-pilot). However, the study's Instagram account appeared to influence study participation, with 43% of post-pilot respondents who use Instagram (n¼65 of 153) indicating that the Instagram account influenced their decision to continue coming to study visits.Conclusion: Despite little change in the participants' attitudes about the study, the findings of this pilot study suggest that Instagram is a promising tool to support engagement of adolescent participants in ongoing research, particularly if the content is designed with adolescents as partners. In addition to assessing the effectiveness of an Instagram outreach campaign to support retention, this paper also presents suggestions and insights for creating similar social media interventions targeting youth.

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Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People

Cited by 16 publications

References 28 publications

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

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

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

Instagram as a tool for study engagement and community building among adolescents: A social media pilot study

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