Discussion
Our participatory research project involved members of the community who had lived experience of homelessness and diabetes in a participatory fashion, empowering them to work alongside the academic investigators as co-researchers. We were able to elicit their shared priorities and subsequently explore these using photovoice. Because they were involved from the outset, group members helped translate the study findings to community decision-makers. The experience was largely positive for our group members, as they described a number of benefits they received through their participation in the group, including both benefits to their health and diabetes management, as well as other tangible and social benefits. Interestingly, the benefits that were described by participants reached far beyond what was initially envisioned by study investigators at the outset of the project (ie, enhanced diabetes knowledge, photography skills). Participants felt that some of the most important benefits they received from the study were intangible: feeling respected, valued, and heard; having a sense of accomplishment and purpose, which led to increased self-efficacy in other domains; and developing a community of people with whom they shared many life experiences. This finding is similar to what has been seen in other studies using participatory research.42 Context, group dynamics, community centeredness, and research design have been elicited as key elements of participatory research.43 As shown in our data, each of these played a key role in the success of our project.
Patient-oriented research, or patient engagement, is becoming increasingly important in health services research, as the academic community comes to realize that input from target groups is crucial to the success of health interventions.44 However, a great deal of the ‘patient-oriented research’ in this area is still done with relatively little engagement, or a low level of participation of patients—who often have a minor advisory or consultation role, and who may be used in a tokenistic fashion.45 That said, there are many examples of high-quality CBPR studies in diabetes prevention and health promotion.9–12 However, when it comes to studies on diabetes treatment or management, these approaches are used,13–15 but are much less common.16
Our reflections on the process of conducting a participatory research project document the impact of the participatory process on the researchers and the research. Impact in participatory research has been defined as ‘the many forms of change that occur with, within and for those who are engaging in the research as well as those changes that occur across the wider complex socio-ecological system or set of systems’.46 These reflections and the data presented in this manuscript highlight impact in a number of forms: alterations to the planned research; evidence of surprise to ‘experts’; exploring unexpected phenomena/problems; and the stories of changes people have made through their involvement (both academics and community researchers).46
Participatory research with community members who face significant social disadvantages can be challenging, as we demonstrated, with half of our participants facing acute health challenges that precluded their participation for a time. The social instability faced by this population can also hinder engagement in research, as was demonstrated by frequent changes in residence and telephone numbers during the study period—this, too, had previously been described in the literature.47 As indicated in reflections from several of our group members, additional support resources and specific training in trauma-based care would have been helpful. Many group members had previous experience participating in community-based group programming and seemed to bring expectations from those experiences to the CDAC. Given the centrality of this feedback, future CBPR studies led by the authors will have more explicit plans for assisting group members with these potential emotional and stress-related challenges.
There is a multiplicity of other challenges with this kind of work as has been described previously,48 including securing funding and getting approval from research ethics boards at the outset, when a discrete research question or methodology has not yet been identified. In our case, this required a flexible funder, and a very basic initial ethics application with numerous subsequent modifications as the study evolved. With respect to compensation, best practice in patient-oriented research states that participants should be compensated as they are providing time, knowledge and expertise,49 yet this needs to be balanced with the possibility that compensation may be coercive to a socially disadvantaged population, as it may provide an incentive for them to participate when in fact they do not wish to do so.50 Finally, this type of work is exceptionally time consuming for the investigators/group facilitators and requires the ability to manage group dynamics and individual personalities in a way that maintains the productivity of group meetings.
Despite these challenges, there are a number of important benefits to using participatory approaches that researchers should consider. First, because the community was involved with the planning and conducting of the research, we feel confident that through our participatory priority setting exercise (concept mapping), we were able to identify a topic that was of interest to the community. Other participatory studies have similarly used priority setting techniques to identify relevant topics for future study.51 52 Furthermore, in our participatory project, we were able to maintain group member engagement and participation through the entire process, including dissemination of the findings to relevant stakeholders. This degree of sustained engagement is not always achieved through all phases of the research.53 We were likely successful in this regard due to the frequent contact and effective delegation of tasks to group members, in addition to the compressed time frame of this research, meaning there was no lull in their participation.
Despite the many intrinsic strengths of this methodology, there are certainly limitations that warrant consideration. While we engaged a diverse group, which included both men and women of multiple ethnic backgrounds, and a variety of diabetes-related presentations (ie, complications, treatments, and diabetes duration), we certainly did not have representation from all groups. In particular, we did not capture the perspectives of those living with type 1 diabetes. Therefore, many potential concerns around insulin titration and hypoglycemia were not strongly represented in the knowledge that was co-created. Finally, because of the context-specific nature of this type of research, the generalizability of these findings to other settings is unclear.
This study offers valuable experience regarding the use of participatory patient-engagement research in studying diabetes experiences in a traditionally underserved population. Participatory research studies that engage similar populations should use methods that maximally involve patients as co-researchers. This type of work is not without challenges, but has a number of advantages over traditional research approaches. We feel that this methodology can provide an important starting point for defining and understanding the priorities of communities with whom researchers can partner to improve healthcare service delivery. Researchers might consider starting research programs with community engaged work of this nature—but conscious effort is required to maintain participant engagement through to the dissemination phase of the research. Based on this experience, in our ongoing and future programs of research we plan to keep community-based co-researchers engaged to help co-design future projects and potential interventions to address the issues they face which lead to an increased burden of diabetes-related adverse events.