Discussion

Despite the growing interest in demand for research that engages stakeholders, few studies on post-concussion explicitly report the details on the mechanisms employed to recruit and sustain or evaluate SER. We explored perspectives on research engagement from adults with experience of concussion attending a provincial brain injury conference. Our efforts likely favored a more research-engaged study sample as compared to the general population by virtue of their attendance at a brain injury conference. Some study participants reported a desire to be more involved in research, beyond the basic level of research subject, again perhaps not that surprising due to their conference attendance. Nevertheless, some of our study findings do line up with other authors’ observations on engagement. For example, lack of time for engaging in research was described by many respondents as the greatest barriers to SER, a finding reported in other studies no doubt due to the universal application.^{Reference Baczynska, Shaw, Patel, Sayer and Roberts28–Reference Black, Strain and Wallsworth32} Culturo-linguistic tensions we defined as the lack of recognition of Indigenous “ways of knowing”. In contrast, other authors referred to cultural barriers as a “power imbalance” between researchers and participants with SER sometimes viewed as acts of tokenism.^{Reference Domecq, Prutsky and Elraiyah2, Reference Haywood, Martinez, Pyatak and Carandang9, Reference Puts, Sattar and Ghodraty-Jabloo15, Reference Snape, Kirkham and Britten31} Similar to other reports, respondents claimed constraints from patient symptoms of fatigue and anxiety could deter SER.^{Reference Carroll Embuldeniya and Abelson29, Reference Vat, Ryan and Etchegary30} Based on our findings related to the severity of symptoms that impede engagement, it may be beneficial to prioritize stakeholder inclusion in research to patients who have gotten through the acute stages of injury recovery to minimize exacerbation of acute symptoms and avoid contributing to the development of prolonged symptoms.

Using a concussion-specific approach to describe barriers to SER yielded terms of “underservice” and “symptom invisibility”. These barriers were not reported in the general engagement literature we reviewed. We speculate there is a need for future studies to explore SER with an injury-specific “lens” since unique mechanisms and barriers to engagement may be overlooked in studies using generic or mixed (disease and injury) study populations. Others concur that studies of targeted populations may provide important opportunities to uncover novel findings to support best practices for successful engagement with special populations.^{Reference McCarron, Moffat and Wilkinson10, Reference Ray and Miller11}

In an effort to build evidence that is coherent and to facilitate comparisons across studies, we identified four key enablers from the respondents to enhance engagement. The first theme a “‘focus on positive impacts” has similarities to other studies which suggest stakeholders may be more willing to engage in research where there is an emphasis on understanding the importance of individual contributions and confirmation that individual views collectively achieve meaningful results for others.^{Reference Callari, Moody, Saunders, Ward and Woodley33} Moreover, stakeholders need to feel they are important members of the research team in order to sustain their engagement.^{Reference Goodman and Thompson13} The need for trust and support can be achieved through face-to-face meetings, and making time to socialize with others on the team has been suggested in studies of generic stakeholders^{Reference Goodman and Thompson13, Reference Vat, Ryan and Etchegary30–Reference Callari, Moody, Saunders, Ward and Woodley33} and is congruent with our second study theme, “build connections”. The third enabler theme “offer financial assistance” is thought by some to be key to engagement.^{6, Reference Goodman and Thompson13, Reference Vat, Ryan and Etchegary30} PCORI developed a model suggesting varying levels of patient financial compensation based on level of engagement.⁶ This approach requires advanced planning with required resources. The fourth enabler theme “creating supportive environments” aligns with other reports of learning how to work together,^{Reference Hamilton, Hoens and Backman34} and a shared understanding of team roles to ensure equity and respect.^{6, Reference Haywood, Martinez, Pyatak and Carandang9, 26–Reference Carroll Embuldeniya and Abelson29} Several papers highlighted supports needed for research training to stakeholders.^{6, Reference Haywood, Martinez, Pyatak and Carandang9, Reference Snape, Kirkham and Britten31–Reference Hamilton, Hoens and Backman34} Some suggest community-based actions directed to the public at large using radio, television, and digital communication tools to improve understanding of research and the importance of stakeholder engagement in health care research with the general public.^{Reference Hamilton, Hoens and Backman34} In contrast, others warn against stakeholder training fearing a “super patient” may result and risk losing their lay point of view.^{Reference Black, Strain and Wallsworth32}

Mapping Study Findings to a Modified Theory

In an effort to build evidence on engagement that can facilitate comparison across studies to improve participation, we modified an individual level theory on health behavior to fit our study findings. While the application of one modified theory will not adequately cover all factors that influence SER, mapping our findings is a beginning effort to consider common measures to recruit, support, and evaluate SER. Our effort to fit the study findings to a Theory of Planned Behavior (TPB)^{Reference Ajzen35} required modifications and was an attempt to explore how individual stakeholder factors may relate to steps to initiate and improve engagement in future studies. TPB posits that behavioral intention is a predictor of actual behavior. The theory considers three constructs as important determinants for behavior: (1) attitudes toward the behavior, (2) subjective norms or the expectations of the social environment, and (3) perceived behavior control. The implications of these three constructs suggest beliefs and perceptions are useful for predicting and influencing behavior intention and intention has been demonstrated to predict behavior, in this case research engagement. However, intention may not always convert to action because of other barriers, such as lack of confidence or personal skill.^{Reference Kroshus, Baugh, Daneshvar and Viswanath36} We interpret the modified TPB to suggest that a more favorable attitude toward research participation, together with improving socially acceptable action of engagement in research and with greater perceived control (meaning confidence that your voice counts in the overall picture of the research) then the net result could be an increased likelihood for a stakeholder to participate in the behavior of engagement. Furthermore, we propose to modify TPB by the application of the four enablers (see Figure 2). It is important to acknowledge that the behavior of engagement involves two sets: the stakeholders and the researchers. Therefore, differences in the researcher’s approachability can also affect stakeholder engagement. Important interventions could be designed to focus on the researcher facilitating the four enablers. Future research may test the proposed modified theory to assess the impact on engagement.

Figure 2: Conceptual framework for stakeholder engagement in research adapted from Ajzen’s^{Reference Ajzen35}theory of planned behavior.