Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.

INTRODUCTION: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). METHODS: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. RESULTS: Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. CONCLUSION: The PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.

Fertility preservation for female patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effective interventions for fertility preservation across institutions. As part of the PanCareLIFE Consortium, and in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in female patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. This clinical practice guideline leverages existing evidence and international expertise to develop transparent recommendations that are easy to use to facilitate the care of female patients with childhood, adolescent, and young adult cancer who are at high risk for fertility impairment. A complete review of the existing evidence, including a quality assessment, transparent reporting of the guideline panel's decisions, and achievement of global interdisciplinary consensus, is an important result of this intensive collaboration.

Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.

Purpose: Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people's experiences with treatment burden and their coping strategies. Patients and Methods: The body mapping method was employed, in which a life-sized outline of someone's body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers. Results: The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist. Conclusion: Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.

Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom.

BACKGROUND: Involvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The purpose of this paper is to describe and reflect on different approaches between researchers and young partners by experience based on six research projects conducted in Canada, Netherlands, and United Kingdom. METHODS: From six exemplar research projects, at least one researcher and one young partner by experience were asked to collaboratively (1) describe the project; (2) summarise the values and practicalities of the project; and (3) reflect on their partnership. Thematic analysis was applied to the findings from these reflective exercises, which included meeting summaries, recordings, and notes. RESULTS: All projects shared similar values, including mutual respect between all team members. Young partners were offered a variety of opportunities and approaches to being involved, for example in recruiting participants, co-analysing or (co-)presenting results. Supports were provided to the teams in a variety of ways, including organizing accessible meetings and having dedicated facilitators. Regular and proactive communication was encouraged by using asynchronous modes of communication, establishing reference documents, and a personal approach by facilitators. Facilitators aimed to tailor the needs of all team members by continuously discussing their preferred roles in the project. While most projects did not offer formal research training, various learning and skill development opportunities were provided throughout, including presenting skills or advocacy training. CONCLUSION: With this paper, we demonstrated the value of reflection, and we invite others to reflect on their partnerships and share their lessons learned. Our recommendations for involvement of young people in research are: (1) Remember that it is okay to not know what the partnership might look like and there is no single recipe of how to partner; (2) Take the time to invest in partnerships; (3) Provide ongoing opportunities to reflect on partnerships; (4) Consider how to balance the power dynamics; and (5) Consider how to incorporate diversity in the background of young partners in research.

In more and more projects, researchers and young people are working together in partnership; but there is little guidance about how to organize this partnership. In this paper, we share what partnerships in six projects from Canada, Netherlands, and United Kingdom looked like, so that others can be inspired. To do so, a researcher and a young partner from each project were asked to together: (1) describe their project, (2) summarize the practical details about the collaboration and (3) think about things that went well or could be improved. We found that all projects had the same beliefs important to partnerships, like having respect for each other. Young people could work on parts of the project they liked in a way that worked for them. They were supported by staff, could join meetings and were appreciated for their work. Clear communication during and in-between meetings was helpful. Youth were often asked about the role they wanted in the project. While there was often no formal training on how to do research, there were many opportunities to learn. We offer six recommendations to researchers and young people who want to partner together: (1) It is okay to not know what the partnership will look like and there is no single recipe of how to partner; (2) Take your time; (3) Discuss how the partnership is going; (4) Think about who is doing what and why; (5) Consider the diversity of young partners. We hope others will share their experiences.

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

PLAIN ENGLISH SUMMARY: BackgroundYoung 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.AimWe 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 doWe 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.FindingsIn 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: BackgroundThe 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.MethodsWe 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.ResultsWe 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.ConclusionsThe 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.