Identity
Youth and families find a sense of their roles and identities within health research CoPs that have been created through IN•GAUGE®. Co-researchers have revealed that they have learned a lot about their own journey with illness through being engaged and finding a space for reflection in the research process. Many co-researchers have reflected on how they felt at ease in the research process and viewed their participation as an opportunity to give back and help others who have similar challenges. Co-researchers often make strong statements about their identity and the ways in which their health condition is intertwined with their identity, and how that identity relates to the particular project. The building of shared identities relating to health research CoPs (i.e., feeling of belonging and being welcomed in the community) is also important, and creates the ability to transcend ways of communicating (i.e., disciplinary, cultural, generational, etc.), acknowledging other’s perspectives, and challenging assumptions [23]. Much of this communication is facilitated through the use of highly flexible interview schedules, as well as the creation of a safe space established as a result of the implementation of Youth Advisory Councils (YACs) and Family Advisory Councils (FACs). YACs and FACs contribute knowledge and direction to developing projects through project scoping, giving input on suitable research methods, providing feedback throughout the research, and planning for and participating in knowledge translation (KT) and dissemination (Fig. 1). Within IN•GAUGE®, for those studies that focused directly on youth experiences of health and illness, YACs facilitated the participation of young people in research outside of the direct influence of their families. FACs brought to light the lived experience of health and illness on families and also served to complement the work of the YACs for those projects more focused on youth experiences. Multi-directional communication and critical self-reflection within IN•GAUGE® health research CoPs contributes to connectivity and learning across boundaries and promotes the development of a shared identity and sense of belonging within health research CoPs, one of Wenger’s (1998) indicators of CoPs. Co-researchers from IN•GAUGE® involved in YACs and FACs frequently state that they enjoyed being engaged through the research process, and state that reflecting through the research process enables them to find different interpretations of their own or a family member’s illness and disability.
Capacity building
Capacity building for youth and their families includes skill development and the enhancement of self-esteem and the ability to build social networks. Skill development involves refining communication and advocacy skills within health research systems (i.e., through YACs and FACs), which is important for developing meaningful engagement within health research CoPs more broadly, as well as in health systems more generally [24]. Through promoting and maintaining relational qualities within the research agendas, the researchers themselves provide many opportunities enhancing the self-esteem and abilities of co-researchers to build and extend their social networks [3]. Co-researchers often express that their opinions were being taken seriously and felt empowered to communicate with others through the research. Enhancing this ability to influence social networks is especially important for youth and families who may be disadvantaged through their experiences with illness. In developing IN•GAUGE® projects it is important to be cognizant that belonging to additionally marginalized groups (i.e., Indigenous, female, etc.) can cause enhanced jeopardy for health and social outcomes (Demas, [25]), requiring special attention to how power relationships are addressed and how social relationships are enhanced within health research CoPs. It is especially important when working with such groups that partnerships are fostered, collaboration is promoted, and that shared concerns are explored (i.e., the domain) early on [26]. It is also critical to consider that social relationships may mean something different for each group of co-researchers and can be influenced by factors such as culture and regional norms [27, 28]. For example, in an IN•GAUGE® study exploring African newcomer experiences with the Canadian health system, co-researchers developed an ability to extend their influence and knowledge that they then used to advocate for improved access to health services in the context of a change in political system (i.e., government cutbacks for newcomer health services).
Leadership
Co-researchers’ learning about identity and the development of new skills eventually lead to greater participation and leadership in projects. A parent of a child with complex care needs talked about their long-term involvement in an IN•GAUGE® study and how being asked to give their thoughts on the research process and dissemination of research findings (i.e., through participating in a video documentary) enabled them to create meaning and engage in deep reflection and learning through the process. Through advisory councils, co-researchers take up a number of leadership roles and have demonstrated commitment and interest in the research reaching its full potential. Co-researchers also report finding spaces within health CoPs where they can directly impact their day-to-day care through finding new pathways for informing service providers about their particular needs. The leadership skills of co-researchers are brought into the initiation and development stages of the research through providing spaces for co-researchers to shape research priorities, project design and methods.
Knowledge building
Patient engagement involves acknowledging that youth and families have certain knowledge and skills, but that they also will gain knowledge and skills through being involved in the health research CoPs [2]. Likewise the experience of knowledge sharing and building holds true to others who may be involved in research (e.g., clinicians), as well as the researchers themselves. Furthermore, direct interactions through health research CoPs are especially important for picking up on social cues and developing critical understanding of the lived experiences of youth and families [29]. Through working with co-researchers it was possible to build knowledge around the topics being researched, as well as knowledge contributing to how to develop approaches within ongoing and future health research CoPs. Co-researchers are keen to be part of the reflexive research design and are asked to give feedback regarding different stages of the research. Innovations in the research process occur through integrating the feedback and striving to find new and better ways to bring youth and families into health research CoPs as fully engaged co-researchers. Through YACs and FACs, co-researchers provide key knowledge for the analysis of data and KT. A few examples include the direct input into content and design for a KT website, involvement in the editing of a video documentary, and feedback on the artistic interpretation of research findings.
Relationship building
Relationship building is an essential component to ethical research engaging youth and families [22], and is central to IN•GAUGE® health research CoPs [3]. Relationship building occurs among youth and families, as well as among youth, families, and different members of the IN•GAUGE® health research CoPs (Fig. 1). Social relationships that are fostered through previous interactions (i.e., through systems of care) between the different co-researchers (i.e., youth and their families, university researchers, service providers, and special knowledge holders) act as foundations for many of the IN•GAUGE® projects. Co-researchers are invited into collaborative spaces where their perspectives are heard and given full consideration and see YACs and FACs as a safe spaces to share experiences with each other and create sense of community. Building relationships in this way lead to the development of respect, knowledge, awareness, and understanding of knowledge within the community and enable youth and their families to contribute in more meaningful ways to health research CoPs. It is also important to acknowledge that being involved in health research CoPs can be burdensome for co-researchers and that the risks associated with tokenistic participation could be managed in part by creating measures to equally value the commitments of co-researchers, such as through adequate remuneration (depending on context, specific research project and contributions, time commitments, etc.). Co-researchers that are part of IN•GAUGE® health research CoPs are given honorariums, as well as other types of compensation (e.g., meals and transportation). Such protocols are put into place to demonstrate respect, value and commitment towards co-researchers. In some situations it is appropriate for co-researchers to be employed as paid staff members on a project as a way of formalizing their roles and compensating them for their knowledge, experience and contributions. Co-researchers involved in IN•GAUGE® YACs and FACs are also often given the option being a co-investigator or consultant to projects. Such categories came with different benefits and types of payments.