When the people who are affected by research help plan, execute, and disseminate the research, then the research is more meaningful and efficient (Slattery et al., 2020). Research collaborations between researchers and other stakeholders such as clinicians, patients, or family members are happening more frequently across health disciplines. When a communication disability is present, the strategies, tools, and working relationships among collaborators take on a unique challenge. This issue highlights the work of researchers collaborating with people with aphasia, their clinicians, and their family members to produce meaningful and useful research products.
Stakeholder-engaged research (SER) is an umbrella term that includes a variety of research approaches and methods that have in common the active engagement and collaboration of people who are affected by the research outcomes (Forsythe et al, 2019). Defining characteristics of SER include the identification of appropriate stakeholders, successful engagement strategies, stakeholders' commitment to the project and research process, stakeholders' capacity to collaborate, and a trusting, effective relationship between the researchers and other stakeholders (Goodman & Sanders Thompson, 2017; Hamilton et al., 2017). Stakeholders may engage in research collaborations at different levels. At the lowest level of involvement, stakeholders may serve in an advisory role, providing feedback on a particular task or topic. Stakeholders may provide more active consultation, affecting research priorities or perspectives. At the highest level of involvement, stakeholders participate in shared research team leadership with researchers.
Engaging stakeholders and building relationships with nonresearcher partners can be a complex and dynamic process that is time-consuming (Malendowski et al., 2021). Most researchers have not been trained in collaborative or team science techniques that extend to nonresearcher collaborations. Researchers and nonresearcher collaborators learn together to navigate this new way of thinking and doing research.
Project BRIDGE (Building Research Initiatives by Developing Group Effort) was created in 2017 thanks to a Eugene Washington PCORI (Patient-Centered Outcomes Research Institute) Engagement Award. The project began by developing training programs for researchers, people with aphasia, their family members, and clinicians who wanted to participate as collaborators on a research team. After completing training, 102 participants attended a 2-day working meeting in October 2018. During the meeting, 11 multi-stakeholder research teams were formed on topics ranging from posttraumatic growth after aphasia to the effects of aphasia-friendly yoga. We followed up with the teams and learned about why some teams were successful and long-lasting, while others were not (Brice & Hinckley, 2022).
Based on the lessons learned in those 2 years and knowing the power of a research team that includes relevant stakeholders, the Project BRIDGE Advisory Team envisioned the creation of a national research incubator. Another Eugene Washington PCORI Engagement Award (2020–2022) enabled Project BRIDGE to provide ongoing training, create a supportive community, and develop tools that empower people with aphasia, their families, clinicians, and researchers to work together effectively. Currently, Project BRIDGE has fostered more than 20 multi-stakeholder research teams across North America that are working together on projects that are important to people living with aphasia.
The Project BRIDGE community has sparked the articles in this issue at some point in their development. They are each an excellent example of how stakeholder engagement can change the topic, approach, and/or outcome of any research project. Each article also details how engagement was accomplished, including challenges. In the first article, Brancamp (2023) describes the evolution of a project that started prior to the 2018 BRIDGE conference and how her partnership with other stakeholders changed the project over time to one that became even more meaningful to people with aphasia.
In the second article, Szabo and colleagues (2023) eloquently describe the intersection of stakeholder engagement in research with the principles of the Life Participation Approach to Aphasia. This article was initiated by one of the coauthors with aphasia and is an example of how research can benefit from stakeholder input.
The third article shifts our focus to students as stakeholders in research. Students are often the people affected by pedagogical research, so it makes sense that they can become collaborators on research that might affect them. Off and colleagues (2023) describe how this can be done in an academic clinical setting with a focus on intensive aphasia therapy.
The fourth and fifth articles explore the topic of friendships; most people with aphasia lose their friends (Northcott & Hilari, 2011), so this is a critical topic for people living with aphasia. Strong and colleagues (2023) approach friendship using a Social Network Analysis method, which not only yielded a productive way for their multi-stakeholder team to communicate but also has clinical utility. Madden and colleagues (2023) collaborated with care partners to investigate how participant care partners perceive friendships after stroke and aphasia.
The sixth article details how Kim and colleagues (2023) formed a research team that included people with aphasia. The research team developed their research methods together and interviewed community-dwelling people with aphasia about how retail businesses could be more aphasia-friendly.
This collection of articles showcases the different strategies, levels of involvement, and techniques that aphasia researchers are using to effectively engage people with aphasia, their caregivers, and student clinicians in multi-stakeholder research teams. We can all learn from each of their journeys. Their work leads the way into a new era in which research is coproduced by the people who are directly affected by it.
—Jacqueline Hinckley, PhD
Brancamp T. (2023). Posttraumatic growth in people living with aphasia: An experience in stakeholder-engaged research. Topics in Language Disorders, 43(1), 5–18.
Brice A. E., Hinckley J. (2022). Building Research Initiatives by Developing Group Effort (BRIDGE): Patient–partners in aphasia research. Seminars in Speech and Language, 43(5), 426–444. https://doi.org/10.1055/s-0042-1756644
Forsythe L. P., Carman K. L., Szydlowski V., Fayish L., Davidson L., Hickam D. H., Hall C., Bhat G., Neu D., Stewart L., Jalowsky M., Aronson N., Anyanwu C. U. (2019). Patient engagement in research: Early findings from the Patient-Centered Outcomes Research Institute. Health Affairs (Millwood), 38(3), 359–367. https://doi.org/10.1377/hlthaff.2018.05067
Goodman M. S., Sanders Thompson V. L. (2017). The science of stakeholder engagement in research: Classification, implementation, and evaluation. Translational Behavioral Medicine, 7(3), 486–491. https://doi.org/10.1007/s13142-017-0495-z
Hamilton A. B., Brunner J., Cain C., Chuang E., Luger T. M., Canelo I., Rubenstein L., Yano E. M. (2017). Engaging multilevel stakeholders in an implementation trial of evidence-based quality improvement in VA women's health primary care. Translational Behavioral Medicine, 7(3), 478–485. https://doi.org/10.1007/s13142-017-0501-5
Kim E., Mauriks K., Wilson C., Auch L., Koo H., Swensrude D., Laccett J., Ruelling A. (2023). Barriers and facilitators to communication accessibility as perceived by people with aphasia. Topics in Language Disorders, 43(1), 76–90.
Madden E. B., Therrien M., Bislick L., Wallace S. E., Goff-Albritton R., Vilfort-Garces A., Constantino C., Graven L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57–75.
Malendowski N., El-Khouri C., Strong K., Hinckley J. J. (2021, April). “Why didn't I think of this before?” Perceptions of stakeholder-engaged research [Paper presentation]. Presentation at the 2021 Aphasia Access Leadership Summit, Virtual.
Northcott S., Hilari K. (2011). Why do people lose their friends after a stroke? International Journal of Language and Communication Disorders, 46(5), 524–534. https://doi.org/10.1111/j.1460-6984.2011.00079.x
Off C., Scharp V.L., Griffin-Musick J. (2023). Graduate student clinicians in health care professions as stakeholders in intensive comprehensive aphasia program (ICAP) implementation and research. Topics in Language Disorders, 43(1), 30–42.
Slattery P., Saeri A. K., Bragge P. (2020). Research co-design in health: A rapid overview of reviews. Health Research and Policy in Systems, 18(1), 17. https://doi.org/10.1186/s12961-020-0528-9
Strong K., Douglas N., Johnson R., Silverman M., Azios J., Archer B. (2023). Stakeholder-engaged research: What our team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43–56.
Szabo G. B., Obermeyer J., Cauthorn A., Hornbostel M., Flacco J. (2023). Combining stakeholder-engaged research and the life participation approach to aphasia: A pilot survey on the aphasia group experience. Topics in Language Disorders, 43(1), 19–29.