By Chelsea MacDonald & Christina Ziebart
Imagine yourself as a researcher working in rehabilitation sciences, you have a participant who was in a motor vehicle accident and has sustained a spinal cord injury. The participant is coming to the life-changing realization that they are never going to be able to use their legs again. This is scary, because they have stairs in their house, they work as a mail delivery person, and they have two young children.
Your research team enrols this participant in a research study investigating a new innovative option for assisting people with a spinal cord injury to walk again—a robotic walker. This means that the participant straps a large, expensive, and complex machine to their body, and it does the walking for them. You and your colleagues are very excited because they see this as a great opportunity for the participant to walk, and you believe your research findings will benefit others who have sustained a spinal cord injury. The participant, however, does not think the robotic walker will be practical or successful to use when they get home and doubts the value of this new technology for other individuals with similar injuries. You begin to question whether the findings of your study will be applicable or relevant to the target spinal cord injury population.
It is important for all researchers to consider the people whom their research is intended to benefit to ensure that the research is meaningful and applicable (1). In order for research to have a positive impact on the target patient population, the end-users should be involved in the whole research process, from developing the research question to establishing strategies for communicating findings to the target audiences.
In a sense, researchers and clinicians should engage the participant at the bedside (e.g., understanding the clinical needs, end-user needs or how research will be practically applied), before designing and conducting the research at the bench (e.g., in the lab, before conducting large trials that may not be user-friendly or applicable, or before implementing a large program that does not suit the needs of its intended user). As such, the idea of person-centred research can be described as “bringing the bedside to the bench”.
Person-centred research focuses on making sure patients are research partners throughout the research process. Person-centred research seeks patients’ input into the evaluation of interventions and their clinical relevance (2). Therefore, a person-centred approach to rehabilitation research promotes the reciprocal flow of information between the patient’s bedside and the researcher’s bench. In this article, we discuss how person-centred rehabilitation research may be promoted through use of the International Classification for Functioning, Disability, and Health (ICF).
Applying the ICF to Rehabilitation Research
Application of the ICF promotes a person-centred approach to rehabilitation research. The ICF is a framework that accounts for the whole person, rather than just their disease or disability. One of the major advantages of using the ICF to support a person-centred approach in rehabilitation research is that it encourages researchers and clinicians to look not only at body function and structure, but also at activity and participation (3).
If your research team had employed the ICF in the previous hypothetical scenario, you would likely have recognized that the participant’s primary activity and participation goals weren’t related to walking. Instead, the participant’s main concerns were playing with their kids and adapting their job to their post-accident abilities. In this way, the ICF may support person-centred research because it serves to help researchers consider the applicability of the research occurring at the bench to the lived experience, goals, and priorities of the patients for whom the research is intended to benefit.
Furthermore, the ICF facilitates holistic consideration of an individual’s experience with disability—considering the physical, psychological, and social domains of functioning involved in one’s disablement experience (4,5). The ICF model also provides a framework that encourages researchers to incorporate patients’ perspectives, which can help to guide more meaningful research (6).
In the hypothetical spinal cord injury scenario, soliciting the participant’s perspective would have likely revealed that the robotic walker is not the best fit since (a) they cannot use it at home, and (b) home ambulation is not the participant’s primary goal. We suggest that participants’ perceptions can help guide the design of new research questions leading to more relevant and applicable findings (6). The ICF may assist researchers in this pursuit. The theoretical framework of the ICF helps tease apart factors contributing to both the objective and subjective domains of a participant’s experience of disablement by making sure that their disability and ability to function are considered holistically. For instance, the ICF encourages the researcher to consider personal factors (i.e., sociodemographic factors such as age, race, gender) and environmental factors (i.e., affordability of installing a ramp at home, and social relationships).
The ICF model also provides a framework that encourages researchers to incorporate patients’ perspectives, which can help to guide more meaningful research.
The personal and environmental factors that are fundamental to the ICF are reasons why some research questions may provide meaningful outcomes while others may not. As rehabilitation researchers, it is important to engage with participants to ensure we fully understand the subjective factors that contribute to the person’s experience of disablement. Accounting for the whole person increases the chances that the research being conducted is in line with the lived experience of the study participants and, thus, improves the potential for long-term applicability of the research findings. In practice, this might include asking participants about personal and environmental factors using questionnaires, capturing their unique goals and priorities using open-ended questions, and exploring the depths of their disablement experiences using qualitative research methods.
How to Bring the Bedside to the Bench
It is the responsibility of rehabilitation researchers to ensure that participants are involved in the research process and that their voices are being heard. Accordingly, clear communication in the form of sharing information about the research process and informing participants about research findings, is important (7). Participatory action research is an approach that creates an equal partnership between the participant and researcher, making rehabilitation research more patient-centred. Participatory action research helps to identify patient-important outcomes to inform the clinical recommendations that may be made secondary to the research findings (2). Ultimately, in this equal partnership, participants learn from the researchers, but researchers must remember that they have just as much to learn from the participants.
Similar to patient-centred care, person-centred research is built on a common ground between the researcher and participant (6). In addition to participatory action research, another strategy that can serve to bring the bedside to the bench is to conduct rehabilitation research using qualitative methods.
Qualitative methods may allow the researcher to get an in-depth understanding of participants’ disablement experiences, including their perspectives about how the disability should be managed or their individual needs with respect to the disability. Returning once again to the spinal cord injury example, your team assumed that walking is the participant’s top priority; however, if you had taken some time to conduct an in-depth interview with the participant about their experiences, you would have learned that a study involving a home-friendly mobility option would have been of more interest and relevance to the participant in question. In turn, your study would have elicited more applicable and meaningful research findings.
Cognitive interviewing is another practical research strategy to engage participants and collect feedback throughout the research process. Cognitive interviewing can involve asking participants to identify and correct problems with survey questions (8). A researcher could go through a survey with participants to see if the questions make sense, if they are relevant, if they are clearly worded, and if there is anything missing from the survey. In this way, cognitive interviewing facilitates pre-emptively collecting participants’ input and feedback to allow for timely and tailored modifications to the survey. Cognitive interviewing can also serve as a bridge between quantitative and qualitative research (8). Researchers must take the time to make sure their surveys are asking questions that are important to the participants to promote person-centred research that delivers valuable findings to the people to whom it is intended to benefit.
Challenges & Limitations
Although person-centred research can provide crucial insights into disability, integrating people with disability into rehabilitation research does not come without challenges. The diverse educational backgrounds and knowledge bases of a participant-researcher team can create complications. Scientific jargon and complex methods can be a barrier to collaboration between researchers and participants since it may be difficult for all participants to understand the research (8). Researchers must take the responsibility to help participants understand the research process to facilitate informed participant involvement to the greatest possible extent.
We acknowledge the time it takes to teach participants about research methods and strategies can slow down an already lengthy research process and increase the costs of an already expensive research program (9). However, even minimal investment of time and/or money in research that is not relevant or useful to the end-user ultimately results in findings that are neither helpful nor meaningful to the intended population. If rehabilitation research is not asking the “right questions”, even an efficiently conducted study is unlikely to justify the time and financial investments made in the first place.
If rehabilitation research is not asking the “right questions”, even an efficiently conducted study is unlikely to justify the time and financial investments made in the first place.
Appropriate planning prior to the research process, along with an open mind set and mutual respect, can help to facilitate successful collaboration between researcher and participant (10). The importance of bringing the bedside back to the bench in rehabilitation research is not novel. However, it is essential that a person-centred approach in rehabilitation research is not forgotten or overlooked in future research pursuits. As such, even though working with a robotic walker to help someone walk is a very exciting research project, it does not meet the needs of participants whose primary goal is mobility at home. Utilizing the ICF, employing a participatory action research approach, and using qualitative methods and cognitive interviewing might have created a more patient-centred research project and, ultimately, provided more meaningful and applicable research findings.
Featured illustration by Min Jee for rehabINK.
To refer to this article, it can be cited as:
MacDonald C, Ziebart C. Person-Centred Research: Bringing the Bedside to the Bench in Rehabilitation Science. rehabINK. 2021:10. Available from: https://rehabinkmag.com
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