Involvement throughout the research
Young partners by experience were asked about the different activities that they would like to be involved in. Additional file 3 outlines the involvement of young partners as they reflect about their experiences in partnering in research projects. The activities that young partners have been involved with provides context about the partnership between young partners and researchers in each project. We then further describe our reflections on the practicalities outlined in the proposed framework by Liabo et al.  to describe how young partners and researchers partnered together in each project team. Additional file 4 provides details about our reflections on the practicalities and what we could have done differently in our partnerships.
During the preparation phase of a research project, young people were involved in a variety of activities which included reviewing plain language summaries of grant applications by the CFP Youth Panel and the SibYAC with the BEST SIBS Project. Most projects were focused on the research activities to start conducting a project, which included the development of the research question, providing feedback on questionnaires, identifying study methods, and developing the interview guide and recruitment materials. The PiP Project highlighted how it was important to involve young partners to draft the recruitment letter for participants in the research, in which young partners ensured that the language was appropriate, and the letter was appealing to other young people to participate in the study. Similarly, the recruitment materials were co-created in the RIP:STARS and VIPER Projects and BEST SIBS Study. Some young partners contributed to the co-development of the recruitment videos. For example, young partners in the READYorNot™ BBD Project drafted, scripted, and provided testimonial videos for the recruitment videos . They further refined and launched the recruitment strategy on social media, such as through their personal networks on Facebook and Twitter. Similarly, young partners in the BEST SIBS Study provided testimonials about the importance of the study to encourage individuals to participate in the recruitment video , which they shared in their personal social media networks. In addition to participant recruitment, young partners were also involved with the design of the study; in the BEST SIBS Study, VIPER, RIP:STARS and PiP Project, young partners and researchers further discussed study methods that would be novel and engage with young people as participants in the study, such as with photo elicitation in which participants could share photographs and describe stories during the interviews . For young partners of the READYorNot™ BBD Project, they were involved with the co-development of an App and prepared the e-learning modules to train research assistants who were conducting the study. In the RIP:STARS and VIPER Projects as the disabled young people were to undertake the whole research project themselves, preparation involved training in research methods and ethics. These examples of activities demonstrate how young people were involved in a variety of ways as part of the team to prepare the study.
During the execution of the study, all projects considered how to involve young people in all activities that they might express an interest. Young partners in the VIPERS and RIP:STARS Projects undertook all aspects of the research projects, including designing their sample, gathering data via interviewing participants and facilitating workshops with other disabled children, co-developing the analysis framework and conducting data analysis, co-writing the final report, developing policy and practice recommendations and implementing the evaluation of the project. As co-leaders of the research, they were trained and supported by academics to guide them in producing rigorous research, but final decisions and the execution of the study was delivered by the young people. Similarly, there was an opportunity for young partners in the PiP Project to be involved in the analyses and interpretation of the interviews. Young partners in the BEST SIBS Study piloted the interview guide and had the opportunity to be involved with the analyses of the interviews. A graduate trainee and first author of this paper (LN) learned alongside with the partners in the BEST SIBS Study about how to provide training and involve young partners in the BEST SIBS Study throughout the process of data analysis. LN developed a brief 10-minute tutorial to explain qualitative terms to young partners. There was an iterative process with multiple discussions among the team to understand and interpret the data. The discussions took place in approximately 1-hour meetings. In one discussion, a senior researcher with expertise in qualitative and mixed methods studies was invited to facilitate the session with young partners to elicit their perspectives of how they viewed the data. Drafts of the developing codes, categories, and themes supported by key quotes were shared with young partners to ask their perspectives and thoughts of whether the information made sense or could use further clarification, and whether there was further information they would like to have asked participants. Overall, young partners could be guided to share their perspectives of how they interpret the study data.
During the implementation and knowledge translation activities of the study, all projects provided opportunities for young partners to be involved with co-presentations at national and international conferences. Young partners of the CFP Youth Panel spoke to key persons in politics, sciences, and societal organizations to improve the position of young people with disabilities, using the outcomes of the projects of the CFP program. Young partners in the BEST SIBS Study shared their personal stories and motivations for partnering in research to raise awareness about the important roles that siblings have in all aspects including research. Young partners of the VIPERS Project provided recommendations to central government, local government, strategic managers, and services, while young partners of the RIP:STARS Project presented to stakeholders and responded to government consultations. In addition to co-presentations, young partners from the VIPERS Project, RIP:STARS Project, READYorNot™ BBD Project, PiP Project and the BEST SIBS Study had the opportunity to co-author publications with researchers [36,37,38,39,40]. For projects that have concluded, young partners could inform the next project. For example, the young partners of the VIPERS Project subsequently developed the idea and concept for the research that later became undertaken by young partners in the RIP:STARS Project, which helped to carry on the legacy of the work by the VIPERS.
In each project phase, most teams formed subgroups based on the activities that young people expressed an interest in. The length of time that young partners have been involved in projects is illustrated in Additional file 5. Some projects, for example, the PiP Project and VIPERS Project, had the same young partners involved throughout the project; other projects, for example, the BEST SIBS Study, CFP Youth Panel, READYorNot™ BBD Project, and RIP:STARS Project had new young partners join or other young partners take a step back when needed during the project. All teams had researchers and young partners working collaboratively together to highlight each other’s strengths during certain project activities and support the interests of all members. The RIP:STARS and VIPERS Projects took a further step in explicitly stating that they operated within the social model of disability, in which they collectively addressed any barriers to ensure that all members had an opportunity to be involved with the project activities.
Supports were provided to the teams in a variety of ways, including the accessibility of the meetings, compensation, and dedicated staff to support the whole team. Details about the supports offered by teams are provided in Additional file 4. For earlier case study projects that were conducted before the COVID-19 pandemic, such as the CFP Youth Panel, PiP Project, and VIPERS Project, there were in-person meetings. The locations were selected based on their accessibility, including being wheelchair accessible or providing quiet spaces for time out. Other individual needs were considered, for example, the CFP Youth Panel ensured that a resting room and allergy considerations were taken into account. While there was aimed to anticipate on individual needs of young partners, such as resting rooms, the project teams emphasize that they would have wanted more time
and resources to take these personal desires more into account.
The format of the meetings was influenced by the context of when the projects began. Some projects were conducted prior to the COVID-19 pandemic and were able to conduct a combination of in-person and virtual meetings. Some teams, such as the PiP Project and RIP:STARS, had a combination of meetings that in-person or teleconference (e.g., Skype). While some meetings occurred on a regular basis, the VIPERS and RIP:STARS Projects had meetings that took place for the full day in-person which provided time for socializing, and in-depth training about research and delivery of the project. Through reflection, the day was scheduled to include defined periods of ‘work’ delivered through creative methods of approximately 45 min, followed by a break, and a lunch break where we could share food and socialise together. Young people reflected positively on the in-person meetings, and wanted more of them. Other projects were conducted during the COVID-19 pandemic and only had their meetings online. For example, meetings in the BEST SIBS Study and READYorNot™ BBD Project only took place online through Zoom, which a toll-free number was provided to ensure that young people could attend the meeting at no additional cost for the call to them.
Compensation was provided to young people involved in partnering with researchers on the team. The funds that were used towards compensation came from different sources that were available in the specific country. For example, the CFP Youth Panel and PiP Project received funding from the FNO which was an organization that supported initiatives to increase opportunities for people in the Netherlands. The VIPERS and RIP:STARS Project received funding from The National Lottery in the United Kingdom. In Canada, the Canadian Institutes of Health Research (CIHR) has a Strategy for Patient-Oriented Research (SPOR). The READYorNot™ BBD Project was awarded funding from this institute with partner funding. The BEST SIBS Study was a doctoral research study, and while there was no funding for partner compensation at the beginning, young partners and the doctoral student (LN, first author on this paper), partnered together to submit grants and received two awards, from CIHR and the CHILD-BRIGHT Network (funded by SPOR).
Details about the funding received by each case study project are described in Additional file 1.
There were a variety of forms of compensation. Some teams offered an annual honorarium fee with additional compensation for involvement in activities, and the BEST SIBS Study and READYorNot™ BBD Project offered compensation based on guidelines offered by the CHILD-BRIGHT Network . For teams that had in-person meetings, the travel costs and meals were covered. Some teams incorporated social activities that were covered financially, for example, young partners in the PiP Project attended a museum or cooking workshop. Further details about compensation are provided in Additional file 4. While compensation supported the involvement of young partners in research, we reflected about the importance of asking young people about how they wish to be compensated. Young partners described how they preferred to have some of the funds for compensation used for team activities. The team activities helped to build rapport between young people and the researchers, which was a strength of the teams. Examples of team activities included attending day trips or workshops together, sending e-gift cards sent to order meals and meet virtually, or sending care packages. Young people appreciated these social activities and would have wanted more of these kinds of activities to get to know their team members. Young partners reflected on the importance of remembering to be human with time for fun and laughs through these activities and even during the meetings throughout our partnership.
An important component to continue to build and sustain partnerships with young people is having dedicated staff to facilitate team activities. Some projects had one or two research coordinators for the team, who could be a dedicated individual hired for the project, researchers, or graduate students. The CFP Youth Panel had a member of the panel who was hired to be the chair a part-time job for 8–13 h a week, with support from other members of the team including the program leader and support officer of the CFP program. Some teams reflected on opportunities to have more young people partnered on the projects, but there would need to be considerations about availability of resources such as funding for compensation and personnel support.
Supports for regular and proactive communication were a key aspect to ensure that all team members were informed of the project activities. There was clear communication about the steps and purposes, and their involvement, which included invitations, in meetings, and constant contact in between meetings. All teams were proactive in continuing their communication using asynchronous modes outside of meetings, such as by sending regular updates by email and reminders for upcoming meetings. Some young people preferred to receive their updates and communications from the research team on other platforms, such as WhatsApp or Facebook messenger. Private group networking platforms were also used to connect as a team, including a platform called “Notebook” for the PiP Project, and a Facebook group for the BEST SIBS Study and READYorNot™ BBD Project. In all projects, young partners felt that the communication platforms were accessible and tailored to their needs. The variety of communication platforms allowed young partners to choose how they would like to be involved and informed about the projects. Young partners appreciated the flexibility to share their experiences, such as by emails, during team meetings, or during individual check-in meetings.
In addition to communication platforms, documents could be provided as a reference for young people and these documents could be a work-in-progress to be revisited throughout the project. For example, young partners in the BEST SIBS Study reflected that they would have liked to have documents including: Terms of Reference that outlined the project descriptions, possible roles and responsibilities to be discussed with young partners, and forms of compensation; Group Rules to describe expectations during meetings and on the Facebook group; and Activity Log that described the types of activities and hours contributed to the activities. Young partners in the BEST SIBS Study reflected on how information from the Activity Log would be helpful to include on a resume for their professional development. Based on feedback from the research team and young partners, these documents were created later on in the project.
A unique aspect of communication is the personal characteristics of the coordinator for each team. Specifically for young partners in the BEST SIBS Study, the member composition consists of young adults exclusively, including the graduate student researcher who was the facilitator of the group. This member composition of young adults allowed for a unique vulnerability and openness of conversation during meetings about the sibling experience. For the CFP Youth Panel, young partners could connect and communicate directly with the chair, who acted as a liaison to communicate with the other members of the CFP program team. The chair was a young partner with experience who helped to improve communication as members of the CFP Youth Panel and chair understood each other and were in similar phases in life. The author team reflected that the coordinators of all projects had personal traits that contributed to the successful partnership between the researchers and the young people: flexibility, openness, patience, willingness to listen, and a conscientiousness for everyone’s knowledge base (e.g., explaining and clarifying information while avoiding the use of acronyms). The coordinators made the effort to consistently communicate about the value that young people brought to the research projects.
Throughout the process of involving young people in research, the teams aimed to tailor the needs of all members of the team including the young people themselves while balancing the research demands and available resources. All teams had meetings, where young partners had conversations with researchers, project leaders, or facilitators about the partnership; young partners were asked the roles that they would like to have in the projects and in various activities. In the VIPERS and RIP:STARS Projects, young partners were co-leaders and all young people decided together about the level of involvement that each person would like to have at each stage of the research cycle. They had different roles, such as undertaking fieldwork or planning a conference. These conversations took place during in-person meetings. In some projects, there was a chair or coordinator who young people could connect with to communicate about their level of involvement or changing involvement. Some projects also had communication tools that helped to facilitate the conversation with young people. In the PiP Project, the group had regular discussions about roles in next steps and activities. Young partners in the PiP Project later recognized the importance of discussing roles and expectations, which led to the co-development of the Involvement Matrix . The Involvement Matrix could be used as a conversation tool to discuss the roles that young people would like to have in research (e.g., listener, co-thinker, advisor, partner, or decision-maker) for tasks in different stages of preparation, execution and implementation in the research project
. Other teams, specifically in the BEST SIBS Study and READYorNot™ BBD Project, were formed after the development of the Involvement Matrix and used this tool along with other tools to have conversations about the roles of young people on the team. Both teams with the BEST SIBS Study and READYorNot™ BBD Project had regular check-in meetings, which they used the Start, Stop, and Continue activity (i.e., what activities the team should start doing, stop doing, or continue doing) and the Involvement Matrix , while the team with the BEST SIBS Study additionally used the Patient Engagement Tool from the Ontario Brain Institute to identify examples of how young partners can be involved in research at different stages of the project (e.g., plan the study, recruit and retain participants, do the study, analyze the results, and/or disseminate the results).
Capacity building relates to the co-learning between young people and researchers, with opportunities for training and learning by experience. While most projects did not offer formal research training, there were considerations from the researchers about how to explain research concepts to young people. In all projects, young partners were explained about the different concepts of research. However, some young people, such as the young partners in the PiP Project, reflected that they would have appreciated opportunities for training about research. Young partners in the READYorNot™ BBD Project reflected about how they would have wanted more conversations with researchers about the terms of “patient-oriented research” and “co-design” to understand how each team member understood these terms and how team members can help each other learn and conduct the project in partnership. Some young people may have had training prior to joining a research project, specifically around the meaning of patient-oriented research. For example, a young partner in the BEST SIBS Study completed the Family Engagement in Research course offered by McMaster University, CanChild Centre for Childhood Disability Research and the Kids Brain Health Network . Some teams offered training if young people expressed they had an interest for training about specific aspects of research.
In the CFP Youth Panel, young partners had the opportunity to be trained in specific activities of the project that they were interested in, such as political activities, conversation strategies, and social media and communication workshops. Young partners of the CFP Youth Panel were also offered a year-long program about advocacy. They were also supported in activities that were specific to the research project. In the VIPERS and RIP:STARS Projects, young partners were encouraged to take on more leadership roles, and they were trained for these roles which included presentation skills, engaging with media, and learning how to budget. Training was also offered to young partners in the VIPERS and RIP:STARS Projects that followed the same pathway and knowledge as an academic level research methods course at the university level but adapted to make it accessible to the individual needs of the group.
For all projects, as young partners reflected on how they gained confidence in their knowledge and skills, they took on the role of being leaders on the project such as being chair of a subteam in the CFP Youth Panel or co-presenting at international conferences for the BEST SIBS Study, PiP Project, READYorNot™ BBD Project. Upon reflection with young partners, researchers recognized the value of learning from and together with young partners about topics that were important to address in the research projects. In the VIPERS and RIP:STARS Projects, the project had an iterative approach to ensure that there was bidirectional learning between researchers and young partners. This ongoing bidirectional learning ensured that the projects were co-led with young partners. Such reflective practice led the RIP:STARS Project team to theorise and publish on a number of tensions between disabled young people becoming research leaders and dominant ideas about disabled children in a disabling society such as overprotection, being empowered through engagement within the project yet restricted in other areas of their personal life, and the emotional impact on disabled young researchers of gathering evidence of a continuing lack of autonomy and rights-based provision for disabled children and young people .