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. 2024 Mar 6;76(1):64–77. doi: 10.3138/ptc-2021-0057

Patient, Family, Caregiver, and Community Engagement in Research: A Sensibility Evaluation of a Novel Infographic and Planning Guide

Andrew Theodore Giannini *, Megan Leong *, Kelvin Chan *, Arman Ghaltaei *, Eden Graham *, Craig Robinson *, Malvina N Skorska †, Andrea Cross ‡, Sharon Gabison *,§,✉
PMCID: PMC10919359  PMID: 38465302

Abstract

Background:

Engaging patients, families, caregivers, and the community (PFCCs) throughout the research cycle ensures that research is meaningful for the target population. Although tools have been developed to promote PFCC engagement, many are lengthy, complex, and lack recommended behaviours. This study evaluated the sensibility of an infographic and accompanying planning guide for facilitating engagement of PFCCs in research.

Methods:

Thirteen rehabilitation researchers reviewed the PFCC engagement tool and planning guide, participated in a semi-structured interview, and completed a 10-item sensibility questionnaire. Interviews were transcribed, imported into NVivo, and analyzed using direct content analysis. Median scores and proportions of responses for each of the 10 items in the questionnaire were calculated.

Results:

Median scores for all questionnaire items were ≥ 4 on a 7-point Likert Scale. Participants reported the tool was easy to navigate, contained relevant items to promote PFCC engagement, and followed a logical sequence. Suggested modifications of the tool related to formatting, design, and changing the title.

Conclusions:

The tool was deemed sensible for overt format, purpose and framework, face and content validity, and ease of usage and provides guidance to engage PFCCs across the research cycle. Further studies are recommended to assess the effectiveness of the tool to engage PFCCs in research.

Key Words: community-based participatory research, rehabilitation research, reliability, validity, qualitative research

Introduction

Patients, their families, caregivers, and/or the community (PFCCs) have traditionally assumed passive roles in research, acting as participants under study.1 However, over the past decade, there has been a shift toward engaging patients at every level of the research process.2 The Canadian Institutes of Health Research describes patient engagement as a “meaningful collaboration where patients become patient partners in the project and can actively be engaged in governance, priority setting, developing research questions, and performing components of the research itself.”3

Engaging PFCCs across all stages of research can result in the selection of relevant research topics, more effective recruitment and retention of research participants, and improved dissemination of results.4,5,6 Given these benefits, it is now recommended Canadian researchers consider PFCC engagement throughout the research cycle and demonstrate such when applying for funding.7 Several challenges and barriers may limit PFCC engagement in practice, including time constraints, financial limitations, and inadequate understanding of what constitutes PFCC engagement and its potential benefits.6,8,9

Several engagement tools, guidelines, and recommendations have been developed to guide researchers through the complexities of PFCC engagement.10–16 Although these resources may provide valuable information, they have not been evaluated. There is also concern that existing engagement tools are only being used by the researchers who developed them and their immediate network and are not being used more broadly.17

The PFCC engagement tool examined in this study consists of a one-page infographic (a visual image used to present information) which presents the steps of engagement throughout the research process (Figure 1), a supplemental planning guide to support researchers in planning engagement activities (Figure 2), and a checklist (Figure 3) developed by two of the authors (SG, MS), one of whom is also a PFCC (SG) engaged in research. This short but comprehensive tool was designed to address common barriers researchers experience when engaging PFCCs, such as the time required to learn about PFCC engagement and poor understanding of how PFCCs can be engaged.17 An infographic was chosen as these can be made readily available and easily distributed digitally.18 Additionally, documents with pictorial messages have been shown to have increased usability.18,19 The planning guide serves as a supplemental resource that offers an in-depth overview of what PFCC engagement is and identifies specific steps for researchers, thereby informing researchers on how to engage PFCCs throughout the research process.

Figure 1.

Figure 1

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Infographic of PFCC engagement tool.

Figure 2.

Figure 2

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Table of contents of PFCC engagement tool planning guide.

Figure 3.

Figure 3

Figure 3

Figure 3

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Checklist for PFCC engagement tool.

As indicated previously, a major drawback to existing PFCC engagement tools is that they have not been evaluated for their validity. Validity can be determined by how well a tool carries out its intended purpose; also described as sensibility.20 Feinstein defines sensibility as “a mixture of ordinary common sense plus a reasonable knowledge of pathophysiology and clinical reality,”20 and developed a framework to assess sensibility among five domains: overt format (i.e., the tool is comprehensive and clear); purpose and framework (i.e., the tool has a clear rationale and is appropriate); face validity (i.e., tool is used in the way it was intended); content validity (i.e., the tool is relevant); and ease of usage (i.e., the time or effort required to use the tool).20 Evaluating sensibility is an important first step for a new tool such as the PFCC engagement tool as it incorporates multiple constructs including evaluation of the format of the tool, face and content validity, and ease of usage. This ensures a tool’s applicability and meaningfulness to users prior to its implementation,21 contributing to its adoption in practice.22 Thus, the objective of this study was to assess the sensibility of the PFCC engagement tool among rehabilitation researchers through the administration of a questionnaire and a semi-structured qualitative interview prior to its recommendation for adoption. Given the potential benefits of engaging PFCCs in rehabilitation research to patients, researchers, and the community,1 and the need to involve PFCCs in research,23 rehabilitation researchers were selected as the target audience to evaluate the sensibility of the PFCC engagement tool.

Method

Ethics approval was obtained from the University of Toronto’s Health Science Research Ethics Board (Protocol # 38489).

Research team

This study was conducted by six students (ATG, ML, KC, AG, EG, CR) in the Masters of Science in Physical Therapy program at the University of Toronto, Toronto, ON, Canada. Three advisors supervised the students, two of whom (SG, MS) developed the PFCC engagement tool as part of the Kids Brain Health Network, CanChild, and McMaster University’s Family Engagement in Research Certificate of Completion Program taught by the third advisor (AC). The Family Engagement in Research Program includes both researchers and PFCCs. One of the advisors (SG) was also a PFCC at the time of the tool development.

Study design

Sensibility was assessed by using a concurrent mixed methods study design.24,25 Data were collected using a structured questionnaire and semi-structured interview delivered at one time point. The integration of the data from the interviews and structured questionnaire occurred during the data analysis. Development of the questionnaire was based on Feinstein’s sensibility frame-work20 and a previous questionnaire implemented by O’Brien and colleagues to evaluate the sensibility of an HIV questionnaire.26 The semi-structured interview guide was adapted from Feinstein’s sensibility framework in conjunction with guidance from previously conducted sensibility analyses.20,26 This combination of assessment measures enabled participants the freedom to expand on their views, while also providing structure so comprehensive information could be obtained.

Recruitment

Ontario rehabilitation researchers were recruited using snowball and convenience sampling via posters displayed throughout the Rehabilitation Sciences Building at the University of Toronto, email blasts to graduates of the Kids Brain Health Network, CanChild, and McMaster University’s Family Engagement in Research Certificate of Completion Program, a recruitment advertisement in the CanChild Centre for Childhood Disability in Research’s newsletter, and social media posts on Twitter and Facebook. Interested participants contacted the research team via email. Participants were screened via phone to determine study eligibility prior to participation. Participants were included in the study if they resided in Ontario and self-identified as a rehabilitation researcher. Graduate students, post-doctoral fellows, and investigators (early-,mid-, and late-career) were included. Participants were excluded from the study if they had previously viewed the PFCC engagement tool or could not speak and read in English. We chose a target sample size of 12–15 participants; it was estimated this would be the number needed for sufficient information power based on our study objectives, participants recruited, and the use of a sensibility framework for analysis27 leading to code saturation (i.e., when no new codes were generated) and meaning saturation (i.e., the point at which identified themes could be fully understood).28

Procedure and measures

Face-to-face or phone audio recorded interviews were conducted by two student researchers (EG, ML) who alternated the roles of interviewer and note taker. Interviews were conducted between February 3, 2020 and March 16, 2020. To ensure privacy and confidentiality, each participant was assigned a pseudonym and data were de-identified.

Demographic questionnaire

Prior to the semi-structured interview, participants completed a demographic questionnaire collecting information regarding age, sex (i.e., male or female), gender (a free response option), highest level of education completed, current stage in career, research area, previous experience with PFCC engagement, previous enrollment in a PFCC engagement course, and professional designation (see online Appendix 1).

Sensibility questionnaire

Prior to the interview, participants were asked to rate their agreement on 10 questions related to face validity, content validity, and ease of usage on a 7-point Likert scale; a rating of 1 corresponded to “highly disagree” and a rating of 7 corresponded to “highly agree” (see online Appendix 2). Survey responses were completed in-person, or verbally scribed for phone interviews.

Semi-structured interviews

The semi-structured interview guide consisted of 14 questions with probes. The questions evaluated each of the five elements of sensibility identified by Feinstein:20 overt format, purpose and framework, face validity, content validity and ease of usage (see online Appendix 3).

Data analysis

Sensibility questionnaire

Median scores and proportions of responses for each of the 10 items in the questionnaire were calculated (see online Appendix 2). Scores for items 5, 6, and 7 were reversed prior to median score calculation. Similar to the method used by Rowe and Oxman,26,29 and O’Brien and colleagues,26 if the median scores were ≥ 4 for at least 80% of the survey items and none of the items’ median scores were ≤ 3, the tool was considered sensible.

Semi-structured interviews

The first interview was manually transcribed by KC and then verified by the interviewers (ML, EG) for accuracy. AG and KC then manually transcribed the remaining interviews for a total of six interviews each. Transcribed interviews were imported into NVivo 12 Plus (QSR International Americas Inc, Burlington, MA, USA) on a secure server for data management and analysis.

Line by line coding of the interviews was performed using direct content analysis.30 To ensure reliability in coding, five team members (AC, ATG, SG, CR, MS) coded the first two transcripts to develop a preliminary coding scheme. The remaining transcripts were coded by two team members (AG, CR) who consulted with one another after the coding of every interview to ensure consistency. New codes different from the preliminary coding scheme led to an updated coding structure. Once coding was completed, the codes were organized into the most prominent recurring themes by six team members (ATG, AG, KC, EG, ML, CR). Data saturation was achieved when no new codes or themes were generated.

Results

Participant demographics

Two of the 15 potential participants were excluded prior to participation as they had previously viewed the tool (n = 1) or were not a rehabilitation researcher (n = 1). Thus, 13 Ontario-based rehabilitation researchers were included in the final sample. Participants were cisgender, mostly female (n = 11), in various stages of their careers, with approximately half (n = 6) in the process of PhD completion. Most participants (n = 8) had previously engaged PFCCs in research, although only one had taken a course on PFCC engagement in research (Table 1).

Table 1.

Participant Demographics (n =13)

Characteristic N (%)*
Age: Median (min-max) 28 (25–53 years)
Sex†
 Male 2(15%)
 Female 11 (85%)
Highest level of education completed
 Bachelor’s 2 (15%)
 Master’s 6 (46%)
 PhD 5 (38%)
Current stage in career
 Master’s in progress 2 (15%)
 PhD in progress 6 (46%)
 Clinician scientist 2 (15%)
 Affiliate scientist 1 (8%)
 Tenured professor 2 (15%)
History of engaging PFCCs in research
 Yes 8 (62%)
 No 5 (38%)
Taken a course on PFCC engagement in research
 Yes 1 (8%)
 No 12(92%)
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*

Unless otherwise specified;

†

Sex and gender were aligned for each participant.

Sensibility questionnaire

Results from the sensibility questionnaire can be found in Table 2. The median scores of all items were at least 4, and 9/10 items had a median score of at least 5. Item 6, “there were missing stages in the tool that should be included,” did not achieve a median score of 5. The items that scored the highest (i.e., median score of 7) were “order of the stages” and “clarity of the planning guide.”

Table 2.

Sensibility Questionnaire Results (n =13)

Item 1 Highly disagree 2 3 Disagree 4 Neutral 5 Agree 6 7 Highly agree Median Min-Max
n (%) n (%) n (%) n (%) n (%) n (%) n (%)
1 The stages outlined in the planning guide and infographic were suitable for engagement of PFCCs in research. 0(0) 1 (8) 0 (0) 2(15) 2 (15) 5 (38) 3 (23) 6 2–7
2 The planning guide and infographic is useful in helping researchers engage PFCCs throughout the research process. 0(0) 0 (0) 0 (0) 1 (8) 2 (15) 7 (54) 3 (23) 6 4–7
3 The planning guide and infographic included important aspects of engaging PFCCs in research. 0(0) 0 (0) 0 (0) 0(0) 6 (46) 3 (23) 4 (31) 6 5–7
4 The tasks within each stage were appropriate and sufficient to aid PFCC engagement in research. 0(0) 0 (0) 0 (0) 4 (31) 3 (23) 4 (31) 2 (15) 5 4–7
5 The stages and tasks outlined in the tool were repetitive or redundant.* 0 (0) 0 (0) 0 (0) 1 (8) 4 (31) 2 (15) 6 (46) 6 4–7
6 There were missing stages in the tool that should be included.* 1 (8) 1 (8) 2 (15) 3 (23) 2 (15) 1 (8) 3 (23) 4 1–7
7 The stages were out of order.* 0 (0) 0 (0) 0 (0) 0 (0) 1 (8) 2 (15) 10 (77) 7 5–7
8 The planning guide and infographic took an appropriate amount of time to read through. 0 (0) 0 (0) 2 (15) 4 (31) 2 (15) 1 (8) 4 (31) 5 3–7
9 The planning guide was clear and easy to understand 0 (0) 2 (15) 0 (0) 0(0) 2 (15) 2 (15) 7 (54) 7 2–7
10 The infographic was clear and easy to understand. 0 (0) 0 (0) 0 (0) 2 (15) 3 (23) 3 (23) 5 (38) 6 4–7
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*

ltems reverse-scored prior to inputting into the table.

Interviews

Interviews ranged from 17 to 31 minutes. Findings are described with respect to overall impression, followed by each sensibility domain (i.e., overt format, purpose and framework, face validity, content validity, and ease of usage) below.

Overall impression

Most participants (n = 11) had positive overall impressions of the PFCC tool, stating the tool was well thought out, and included valuable information to help researchers. Jordan stated, “I think it’s very good and I will be using this in the near future.” However, two participants who had previous experience with PFCC engagement by virtue of their field of research had somewhat negative impressions, stating the tool did not further their knowledge. Mason stated, “Because of my background in social sciences, engaging the people that you’re doing research about is at the very basis of what you do. So in that sense the tool didn’t help me particularly.”

Overt format

Five participants thought the title of the infographic was clear, to the point, and suitable. However, most participants (n = 10), including two who thought the title was suitable, suggested modifications for the title: removing the PFCC acronym (n = 5), clarifying the infographic’s intent to be a step-by-step process intended for researchers (n = 3), and enlarging and capitalizing the title to make it more visible (n = 2).

Most participants (n = 9) held predominantly positive impressions regarding the infographic’s overall design, stating it was consistent, aesthetically pleasing, and easily readable, and that it used appropriate spacing and language. Despite this, most participants (n = 11) provided suggestions to improve the PFCC tool. The most reported suggestion (n = 5) pertained to improving the tool’s accessibility for individuals with visual impairments by addressing the dark colour contrast and small text size. On the other hand, Mason stated, “I’m actually red-green colour-blind and I could read this, so that’s a great sign.” Four participants suggested including the infographic earlier in the planning guide to ensure it is visible to the reader, as echoed by Erin who said, “Somebody may just see references and stop reading.” Two participants felt the infographic was overly crowded and suggested reducing some text.

Purpose and framework

Overall, participants perceived the purpose of the PFCC tool was to outline possible avenues to engage PFCCs in research, as reflected in Becca’s statement: “I think it’s really to help from the very beginning, before you even start the engagement process, on how to meaningfully engage with [PFCCs].” An environment in which participants thought the tool would be especially helpful included the clinical research environment (n = 4).

Seven participants felt the PFCC tool could be useful for both PFCCs and researchers, whereas three participants felt the tool would specifically benefit researchers more than PFCCs. Five participants said the PFCC tool would be especially helpful for students or novice researchers, as highlighted by Becca who is completing her PhD: “There’s a lot of really important information like how to get started … what to do and … [what] I am allowed to do.” Four respondents said the PFCC tool could be more useful for researchers who lack experience or “for those who are new to partnering” (Kai).

Face validity

Eight participants thought the tool would help facilitate PFCC engagement throughout the research process, as participants perceived it to provide suggestions as reflected by Becca who said it included, “A lot of helpful strategies and tips.” Five participants felt the PFCC tool effectively outlined the stages of research that can involve PFCCs, and the associated roles PFCCs can play.

Certain parts of the tool were considered confusing and would benefit from editing and clarification. For example, Gale discussed the clarity of the language, explaining how, “With specific points … [it] was unclear if it’s the researcher who’s supposed to be doing the [task] or the PFCC.” Additionally, five participants indicated engaging PFCCs in the research process may be difficult to implement and it would be beneficial to include strategies in the tool to promote PFCC engagement. Ensuring a diverse representation of PFCCs would be challenging, as Jordan stated, “From my supervisor’s previous experience, she said that there is a typical … standard. There are certain people that just don’t participate and they’re having a hard time recruiting a diverse group of people.”

Content validity

Nine participants commented on the stages and checklist items in the planning guide. Six of these participants stated the stages provided appropriate suggestions on how PFCCs can be incorporated in the research process. Three of these participants said the checklist items helped break down the stages to provide several options to engage PFCCs in research. Lenny stated, “… the tasks are actually one of the things that I liked best out of the whole information package. It gives a lot of options and a lot of points where you could engage PFCCs.”

Three participants indicated they liked that the tool emphasized the involvement of PFCCs across all stages of the research process, specifically data analysis and interpretation of results. Cam stated, “It’s really interesting to think of involving them in troubleshooting in data collection, [and] even looking at the data. They’re looking at it with such a different lens. Even just having them help with entering and analyzing … their interpretation might show things that I would [not] necessarily always see.”

Nine participants commented that the order of the stages and tasks within the planning guide and infographic were generally appropriate and followed a logical flow. Nine participants said they would not make changes to the order, whereas three participants made suggestions to the order of the tasks in the planning guide. For example, Cam stated, “ … you have ethics listed here before like funding applications. And it depends on the funding applications, but you often apply for the funding first.”

Ease of usage

Most participants (n = 8) stated it took between 15 and 30 minutes to review the PFCC tool; however, it took 3 participants less than 15 minutes, and 2 participants more than 30 minutes. Five participants stated a more detailed analysis of the tool would require more time. Four participants suggested it should take between 10–15 minutes to review any PFCC tool, while 3 participants reported it should take 20–30 minutes to review any PFCC tool. Three participants suggested the tool should be shorter to motivate busy, tenured researchers to take the time to review it. Erin stated, “ … but I can see it being an issue … for people who are higher up in research … I can see them not really wanting to open up a 16-page document and read all the way through it.”

The majority (n = 11) of participants thought the tool was easy to understand and required an appropriate amount of effort to go through. Of these participants, six reported that formatting details (i.e., table of contents, graphics/charts, lists) were helpful for breaking up sections of heavy text, “which made it easier to read through” (Harper). In contrast, four participants found the planning guide confusing, stating it was over-complicated, failed to provide context, and would benefit from more visuals.

Six participants thought the planning guide complemented the infographic well. Erin stated the infographic provided, “A nice, short, and concise way of outlining everything.” However, three participants felt there was a missing link between the planning guide and the infographic. Mason stated, “I know the planning guide informed the infographic but when I looked at the infographic, I didn’t think about the planning guide.”

Recommendations for modifications

A variety of recommendations for modifications and additions to the PFCC tool were provided which spanned content validity, face validity, and ease of usage. Table 3 provides a summary of the proposed modifications.

Table 3.

Recommendations for Modifications of the PFCC Engagement Tool

Category Sample quotes
Face validity
 Modifications to promote furtherlanguage within the planning guide (n = 5) “…the language makes it seem like some [stages] are more just [for] the researcher, and some are more … [to] find things out [from PFCCs]. So I think clarity there might help the researcher know … what types of things they should be doing independently and then getting the feedback from the PFCC on it. Or integrating them from the get-go kind of thing … ” –Gale
Content validity
 Addressing inclusion of PFCCs of diverse populations (n = 8) “ … include some resources and some mention that engaging in different groups might require different kinds of skills or different ways of working with those groups.” – Kai
 Adding pragmatic examples throughout the planning guide (n = 4) “… There needs to be a box of real-life scenarios in the appendices. This would give researchers an idea of what you do in a certain situation and this is how it was successfully handled.” – Kai
 Addition of information to guide PFCC recruitment (n = 3) “ … vetting, interviews, CVs, does any of that come into play?” – Finn
 Moving the funding application step before ethics (n = 3) “You have ethics listed here before like funding applications. It depends on the funding applications, but you often apply for the funding first.” – Cam
 Indicating that the research process is cyclical and not a linear process (n = 3) “Going back and forth between stages is something that is a good thing. It should be encouraged to do that or at least consider that these stages don’t often happen in a sequential order.” – Mason
 Acknowledge the power imbalance between the PFCC and researcher/stakeholder (n = 2) “ … chang[e] the language and … more explicitly acknowledg[e] that there will always be a power differential between the researcher and the PFCC.” - Lenny
Ease of usage
 Modification of hyperlinks within planning guide (n = 4) “ … it would be useful if some of that information can be included in the tool itself. Just so you wouldn’t have to go to so many different websites …, it would be also nice if you can click the links. Because I think you have to type them out.” - Jordan
 i) directly embed information from external resources
 ii) modify links to make them clickable within pdf
 Modifications to the planning guide and infographic to promote better consistency/unity between them (n = 3) “ … it’s important that the headings are the same headings that are used in the guide so you can look at each, and not wonder is that supposed to be related to that? ” - Kai
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Discussion

This study examined whether a newly developed PFCC engagement tool was sensible, including format, face and content validity, and ease of usage. A sensibility evaluation was chosen due to the multiple constructs a sensibility evaluation would entail. Like other existing engagement tools that guide PFCC engagement, the sensibility of our PFCC tool had not previously been evaluated, inspiring the current study. Our sensibility evaluation, based on Feinstein’s framework, indicated that our tool is sensible in providing rehabilitation researchers with information on how to engage PFCCs in the research process. Participants valued the provision of concrete, actionable steps in the PFCC tool. However, interview findings indicated prior experience with PFCC engagement influenced how participants perceived our engagement tool.

Furthermore, although many participants felt the info-graphic and planning guide represented an effective way to share information, concrete recommendations were provided to improve the tool. These included the provision of further exemplars and consideration of how to include under-represented groups. Finally, participants expressed their appreciation of the variety of roles PFCCs can have in research beyond recruitment. Each of these concepts will be discussed below.

The PFCC tool provides actionable behaviours to engage PFCCs in research

Including PFCCs in research involves a deliberate plan, as it is an evolving process that takes time and effort by both researchers and PFCCs. However, lack of knowledge and time constraints to involve PFCCs throughout the research cycle are common concerns among researchers.6 To bridge this gap, participants felt the tool’s purpose was to outline possible avenues and practical steps to engage PFCCs in research. Participants believed the PFCC tool appropriately highlighted the main research tasks that can involve PFCCs, including providing a detailed description of what PFCC engagement is, which roles PFCCs may hold, and how to best involve PFCCs. The information and guidance this tool provides may help to address barriers researchers face toward successful PFCC engagement.

Prior experience with PFCC is relevant

Differences in perceptions of the tool may be attributed to the participants’ varied experience with PFCC engagement. Health researchers with little to no experience with PFCC engagement have attributed their lack of PFCC engagement to a poor understanding of what constitutes PFCC engagement in conjunction with limited guidance from their institutions.31 The barriers faced by researchers who are inexperienced with PFCC engagement aligns with our findings as participants with minimal PFCC engagement experience wished for a more comprehensive tool with additional resources in their field of research. Conversely, those with extensive PFCC engagement experience believed the tool did not broaden their existing knowledge. This is expected as those with extensive experience are familiar with the concept of engaging PFCCs.31

Researchers with extensive PFCC experience cite limitations to engagement as lack of funding and compensation for PFCCs, rather than lack of knowledge of how to engage PFCCs in research. To highlight this point, Nilsen and colleagues32 noted consumer involvement in health research often requires greater physical resources, possibly resulting in significant resistance from institutions and grant-awarding bodies. Overall, the difference in self-efficacy reported by those experienced and inexperienced in PFCC engagement in this study suggests the need to consider PFCC engagement experience when developing resources and tools that guide PFCC engagement. Researchers with little or no experience may benefit from our tool more than experienced researchers since it aims to provide background information about PFCC engagement and possible avenues to engage them throughout the research process.

Infographics are an effective medium to share information

For infographics to be effective, they should have a compelling title, use illustrations over text where possible, be visually appealing, and follow a clear narrative.18,33 Our infographic was designed to deliver the necessary information and guidance on PFCC engagement while overcoming the associated time barriers that come with learning about PFCC engagement. Although the infographic resonated with most participants because it gave them a visual aid to quickly refer to throughout the research process, many participants suggested modifications to this part of the tool, such as the infographic’s title and colour contrast. The need for a clear and captivating title is important as it is often the first text encountered by a reader in an infographic.18

To make the title stand out, participants suggested increasing the font size and omitting the use of acronyms. Powerful infographics require enticing colour-contrast and appealing visuals to attract a reader’s attention.33 Thus, the use of white text on grey background in our infographic may have contributed to the infographic’s diminished visual appeal, according to participants. With future modifications, the infographic has the potential to be more visually appealing and therefore more effective.

Ensure under-represented groups are included

Historically, minority groups, including those of varying racial, ethnic, religious, gender, and sexual backgrounds, have been under-represented in research,34,35 resulting in decreased applicability of research findings to these groups.34 Participants highlighted the perspectives of minority groups were lacking from the PFCC tool and engaging minority groups is difficult among researchers. Other engagement tools also lack suggestions on how to engage minority groups.17,36 Several barriers in engaging with minority groups in research have been identified, including the lack of awareness of cultural differences in minority groups by researchers, leading to ineffective communication throughout the research cycle.37 Additional factors, such as mistrust, and overt and subtle forms of racism, have also lead to lack of engagement of minority groups in research.37

Engaging under-represented groups in research ensures diverse populations are equally depicted. Minority groups can provide distinct perspectives for developing research topics, assisting with data analysis, and participating in knowledge translation to ensure meaningful applicability of the research findings.34 Participants specifically suggested that the PFCC tool should incorporate targeted strategies for recruitment and engagement of individuals of minority populations. Future tools would benefit from providing concrete recommendations on how to engage under-represented groups.

PFCCs can engage in research beyond recruitment

It is important to include PFCCs throughout the research process due to the many proposed benefits, including increased participant recruitment and improved dissemination of findings.6,38 However, there is a lack of PFCC involvement in later stages of the research process, with most PFCC engagement occurring during study design and recruitment.6 Our PFCC engagement tool provided suggestions for researchers to engage PFCCs in the earlier stages of research with continued engagement with each subsequent stage. Specifically, one role deemed extremely valuable by participants was the involvement of PFCCs in data interpretation, as many participants had not previously considered this option. The insightful contributions of PFCCs in data analysis can ensure the research findings are adequately reflected and translated for practical use by the community.39 For PFCC engagement to occur successfully throughout the entire research cycle, recommendations include engaging PFCCs as early as possible, defining the roles and duties of PFCCs and the researcher, and maintaining PFCCs’ involvement until the research process is complete.38 The PFCC tool accomplishes this by clearly depicting several methods for PFCC engagement within each respective stage of the research process.

Exemplars are helpful

Involvement of PFCCs in research can provide several challenges for researchers.6 Participants expressed uncertainty regarding the active role PFCCs can have in the research process, how to vet PFCCs, and the means of ensuring meaningful PFCC contributions. Although the tool provided appropriate tasks to guide researchers to include PFCCs, the tool lacked sufficient concrete examples of how to effectively complete these tasks. Participants requested the addition of pragmatic examples of successful PFCC engagement to better understand how to include PFCCs in their own research. The addition of examples could provide users with guidance on how to overcome potential challenges and highlight the benefits of PFCC engagement in research.

Limitations and future directions

The strengths and limitations of our study must be taken into consideration when interpreting our findings. Although we used a semi-structured interview guide, two members of the research team conducted the interviews. Individual interviewer styles could have led to variation in questions and probes, eliciting varied responses from participants.

Insufficient direction was provided to participants with regards to reviewing the PFCC tool prior to the administration of the questionnaire and interview. For example, some participants failed to review the info-graphic prior to the interview because they did not read the content in the appendix of the planning guide. Consequently, this impacted their responses to certain questions.

Although an inclusion criterion was that participants had to be Ontario-based rehabilitation researchers, most participants were from the Greater Toronto Area. Therefore, our results may not accurately represent the views and experiences of rehabilitation researchers across Ontario or across Canada. Likewise, our cohort of rehabilitation researchers limits the generalizability of our findings to other researchers. Our sample had an unequal representation of cisgender male (n = 2) versus cisgender female (n = 11) participants. Additionally, there were no transgender or gender diverse participants. Therefore, our findings may not represent potential differences in the challenges faced by cisgender males, cisgender females, transgender, or diverse individuals with PFCC engagement, although we know of no research to suggest this is the case. Our sensibility questionnaire was not a validated measure; however, it was based on previous sensibility questionnaires that used Feinstein’s sensibility framework.20,26,29 Future directions involve incorporating participant recommendations into revisions of the tool, investigating the efficacy of the PFCC tool on engaging PFCCs in research, and reassessing its sensibility with a larger and further diversified sample.

Conclusion

In conclusion, the PFCC tool is sensible with respect to overt format, purpose and framework, face validity, content validity, and ease of usage. The results from our study outline areas for improvement with future revisions of our tool. This includes changing the design of the info-graphic, re-wording the title, content changes, such as ensuring equity, diversity and inclusion are considered, and alterations to the tool’s language to clarify the roles of the researcher and PFCC. Our PFCC engagement tool can be readily used by beginner researchers or those unfamiliar with how to engage PFCCs who require guidance in this regard across the entirety of the research process. Additionally, the PFCC tool can be used as a reminder or refresher for more experienced researchers who currently engage PFCC in research. Further studies may wish to evaluate whether these tools are effective at increasing researcher’s engagement of PFCCs.

Key Messages

What is already known on this topic

Patient engagement is an emerging area in research and is recommended by the Canadian Institutes of Health Research. Despite evidence supporting the involvement of PFCCs in research, several barriers limiting PFCC involvement exist. These barriers include researchers lacking the knowledge to ensure proper engagement of PFCCs, time constraints, and uncertainty about the roles PFCCs can have throughout the research process. Several tools have been developed to guide researchers with PFCC engagement; however, they have not been evaluated for their sensibility.

What this study adds

To our knowledge, this is the first study to perform a sensibility analysis of a PFCC engagement tool. Through a questionnaire and interview, feedback was provided using Feinstein’s sensibility framework. Our findings demonstrate the PFCC tool is sensible. Future revisions of this tool based on participants’ feedback will further enhance this PFCC engagement tool’s ability to support and guide researchers when engaging PFCCs throughout the research process.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Citations

  1. Canadian Foundation for Healthcare Improvement. Patient engagement resource hub, patient, family and caregiver engagement and partnerships. 2019. [cited 2021 Aug 19]. Available from: https://www.cfhi-fcass.ca/WhatWeDo/PatientEngagement/PatientEngagementResourceHub/Results.aspx.
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