The demographic information of the community researchers is specified in Table 2 (Appendix B). Three of the four community researchers were male, and between the ages of 40–50; and one of the researchers was between 30-40 years of age. Their level of education varied from having a high school diploma to some college or university education. None of the community researchers’ had a background in healthcare or health education. All participants completed the project training and spirometry certification successfully. Below is the community researchers’ self-reported knowledge assessment for the spirometry training they underwent, as well as their overall experience in their role within the PROMPT project.
PART 1: Self-reported knowledge assessment
The following section is an analysis of the results from the completed pre- and post-training questionnaires that were administered. Responses to questions about self-reported knowledge and confidence in administering hand-held spirometry tests illustrates that participants had minimal knowledge of the anatomy and physiology of the respiratory system prior to the training. An improvement in both self-perceived knowledge and confidence in administering hand-held spirometry was observed when comparing participants’ responses before and after the entire training program (See Fig. 2). Importantly, after completion of the final training session, the participants felt very confident in being able to administer a good quality lung function test. Community researchers indicated, on their first pre-training workshop questionnaire, that they believed further training would help improve the quality of the spirometry result. However, upon completion of the training, in the final questionnaire, they disagreed that they needed further training.
When comparing the mean of the answers to the pre-and post-training session skill-testing questions asked on each day of the training, there was no significant improvement as shown below in Fig. 3.
The type of training they would most benefit from varied considerably amongst the community researchers. In the pre-training workshop questionnaires, community researchers indicated a preference to observe the procedure performed by the trainer, while unsupervised practice was selected more often by the community researchers in the post-training workshop questionnaires (See Fig. 4). Post-training questionnaires demonstrated that the training workshops were very helpful. Community researchers did not provide any constructive feedback about the training on the open-ended survey question listed in the post-training questionnaires.
PART 2: Evaluating community researchers’ overall experience
The following is an analysis of the results from the interview at the end of the study with the two most involved community researchers to understand their: 1) personal gains and challenges with project leadership, 2) perceived gains and challenges faced by the community and participants, and 3) insights about overall project successes and challenges.
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I.
Personal Gains & Challenges with Project Leadership
The first part of the questionnaire focused on the community researchers’ personal gains achieved and challenges faced through participation in the study. The major themes that emerged as personal gains included: an increase in self-confidence; feeling like valuable members of the community in their role as community researchers; an increase in knowledge of both research methods and smoking physiology; and feeling motivated for self-change. The community researchers stated that the experience provided, “inspiration to continue to find ways to help others,” and “motivation for self change through a safe space for sharing and seeing others having success with their own changes [with tobacco smoking].” They also stated a feeling of “increased respect for other members of the community,” and gratitude for having the “opportunity to grow and learn by participating in all research steps such as data analysis and grant submission.” The increase in confidence was stated as a result of experiencing “high levels of trust, respect, and responsibilities.” In fact, the community researchers found that the “project never ends at the door as a community peer,” as study participants were contacting them even after hours, further demonstrating the importance of their role in directly interacting with the study participants and in leading a project of this kind. However, there were also some challenges, especially around the usual challenges that occur when implementing a community engagement framework. Power issues between the academic researchers and community researchers are real and many a time unavoidable [27]. Throughout the process, community researchers expressed feeling a power imbalance between the academic researchers on the team and themselves. A community-researcher expressed, “At times I felt like there was a hierarchy and felt that I was not heard. I felt that since I did not have as much education as others my contribution was not as valued.”
Navigating issues around power were challenging for both the academic researchers and community members. The delicate balance between day-to-day challenges experienced by project participants and the demands of the rigorous research protocol at times led to feelings of tension, underpinned by the experience of a power differential between members of the research team. For example, it was challenging on occasion to negotiate the follow-up schedule mandated by the research protocol and the accommodation of various needs and challenges faced by community researchers and participants on access to transportation, legal issues and/or infrequent and unreliable communication. However, community researchers had an overall, very positive experience participating in this project.
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II.
Perception of Community Gains & Challenges
The second part of this questionnaire assessed the community gains and challenges that were experienced and/or observed by the community researchers. The community researchers had not expected that as many of the study participants would reduce or quit tobacco use as they in fact did. They were also surprised to observe that this change in tobacco smoking among study participants impacted several of the other determinants of health, which then positively impacted both their lives and health. They noted that this commitment to reduce smoking was an accomplishment in itself, and was associated with building confidence within the community, and was also a source of motivation among the group. Additionally, a community researcher commented, “When people stopped coming, I thought they might be out partying when in fact some were getting jobs, going to rehab, or in the hospital getting better. At times, we stigmatize our own community and ourselves.” This comment provides valuable insight not only on the positive changes that participants were making for the betterment of their health and quality of life, but also the problematic and harmful misunderstandings, perceptions, and stigma that can be associated with their actions.
Furthermore, community researchers felt that having a limited capacity for the PROMPT intervention was a factor that caused division in the community. Overall, we learned that while implementing the project with a shoestring budget itself is challenging, implementing it in a significantly marginalized population adds another layer of threat due to the challenges they face. Therefore, not having enough funding to cover all costs and enroll more participants after the project led to traction in the local community, and was difficult at best. Community researchers felt that the project taught them a great deal personally and communally.
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III.
Community Researchers' Insights about Project Success & Challenges
Intervening in the lives of participants who smoked and came from at-risk communities initially led to perceived challenges of program inertia, and uncertainty about project success. Community researchers indicated that the resistance to make changes to the program was influenced by the need to maintain trust among study participants, as this community “often has trust issues from past experiences.” Secondly, uncertainty with respect to program success was also identified as a challenge as community researchers felt accountable as program leaders. They expressed that, “service providers can just go back to the office, but as a peer you can’t hide from your own community.” In addition to these perceived and actual challenges, came perceived and real successes. Community researchers found that participants were motivated and therefore easy to recruit; that front line health professionals involved in the study were able to provide support that extended beyond smoking cessation; and that the OCEAM, which was achieved through the PROMPT program, is a framework that they believe will impact the way others studies are run. A community researcher stated, “Many people are interested in integrating elements of our project into their own. I hope we can show people it works, and the snowball effect that will happen from it…I have faith that this will turn into a model that others will use.” This statement demonstrates that the community researchers were pleasantly surprised by the project’s outcomes and benefits gained by their community. They truly believe that other research teams working in various settings could adapt this community engagement model into their diverse programs.
Overall, the community researchers reported regaining confidence in the professional community, and provided constructive feedback on the project processes. In addition, they indicated a gain in self-confidence, feelings of inspiration, and a gain in knowledge and skills through their active participation in the project. PROMPT project outcomes unexpectedly impressed the community researchers, as participants not only reduced and/or quit tobacco smoking, but also other illicit substances such as fentanyl and oxycontin. Furthermore, community researchers were pleasantly surprised to observe that many of the PROMPT participants made additional improvements in other areas of their life; such as making the decision to return to school or work, eating healthier, and engaging in community-based work [12]. More specifically, the feasibility study demonstrated that of the 80 participants recruited in this study, 79% reported reducing their tobacco intake, 9% reported quitting tobacco use, 18.8% reported reducing poly-substance use, and 30% improved their general socio-economic status gradually helping them to improve their health and quality of life [12].