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Abstract

Participant feedback can help researchers identify aspects to consider and improve in the design of future studies. In this study, we explored the experiences and perceptions of participants who participated in a photovoice study, and their thoughts on how the study could be improved to enhance participant experiences, accessibility and inclusivity. Fourteen racialized individuals impacted by stroke, including individuals who have experienced a stroke (n = 11) and stroke caregivers (n = 3), participated in this qualitative interpretive descriptive study via one post-photovoice interview to share their experiences and perspectives in the photovoice study. Three themes were generated following Thorne’s interpretive description analysis approach. Theme 1 ‘motivators, enablers, barriers and opportunities to enhance participation in a photovoice study’ highlighted participants’ motivations to participate in the photovoice study and potential barriers that could limit participation by some in the study. Theme 2 ‘meeting diverse participant needs and preferences in the photovoice study’ highlighted participants’ thoughts on how researchers could enhance participant experiences, accessibility and inclusivity in a photovoice study within the study’s structure and logistics, photo-taking, individual interviews and focus groups. Theme 3 highlighted participants’ thoughts on the benefits of study participation, including the direct and indirect benefits (or lack thereof) and their opinions about the honorarium. While these findings only reflect the experiences of 14 participants in a single photovoice study, they may offer valuable insights for researchers looking to critically assess and refine their own methods. In particular, they highlight the importance of designing approaches that are inclusive, accessible and responsive to the diverse needs of participants.

Keywords

photovoice stroke participatory action research qualitative methods inclusion

Introduction

Over the past two decades, the underrepresentation of racialized populations in research has led to calls for their greater representation in stroke research (NIH, 2001; Singh, 2024; Stansbury et al., 2005). The term racialized is used throughout this manuscript to acknowledge the social construction of race and ethnicity and the experiences of discrimination (i.e., different treatment) based on multiple factors, including phenotypical factors (Ponce et al., 2023). Racialized communities have been underrepresented in stroke research (Cruz-Flores et al., 2011; Stansbury et al., 2005). This underrepresentation in research may be one contributor to unmet service needs (Pardhan et al., 2025). Racialized communities tend to experience lower access to/use of stroke services than non-racialized populations (Bishop et al., 2025; Gregory et al., 2006; Ikeme et al., 2022). Researchers have identified various factors, including societal and historical, that contribute to mistrust in research and healthcare within these underrepresented communities (Fryer et al., 2024). The adoption of culturally sensitive research strategies (Pardhan et al., 2025) and studies conducted specifically with these underrepresented communities (Brown et al., 2014) are two recommended approaches to increase their representation in research.

Photovoice is considered a culturally appropriate and culturally sensitive methodology (Kim et al., 2019) in which participants capture photographs and narratives to respond to research questions about topics that are personally meaningful (Wang, 1999; Wang & Burris, 1997). It provides an approach to elevate the voices of those underrepresented, allowing them to share their individual experiences and reflect on concerns with others who have had similar experiences (Wang, 1999; Wang & Burris, 1997). In capturing photographs, participants identify what is important to focus on and areas that need to be changed (Harley et al., 2015). Photovoice has three main goals: (1) to represent the participants’ realities through photographs and narratives, (2) to engage participants in critical self-reflection and group dialogue about individual and community strengths, and (3) to share the information with individuals who can create change, such as policymakers (Harley et al., 2015; Wang, 2006).

Photovoice has been used as a way to engage people from different groups in research. It has been used to study various issues impacting diverse groups and communities, and has highlighted disparities experienced by marginalized individuals and communities (Bennett et al., 2019; Dixon & Hadjialexiou, 2005; Harley et al., 2015; Mamary et al., 2007; Wang, 1999), including individuals from racialized communities (Halvorsrud et al., 2019) and those impacted by stroke (Balakrishnan et al., 2017; Maratos et al., 2016; Singh et al., 2025; Törnbom et al., 2019). However, photovoice is not without its critiques and potential limitations should be considered. Scholars have raised concerns that some uses of photovoice may reinforce a positivist perspective, suggesting that there is an objective truth that can be captured about a community through participant photos and narratives (Nykiforuk et al., 2011; Shankar, 2016). In addition, photovoice may not be a suitable form of expression for every individual, emphasizing the importance of considering cultural, contextual and individual needs (Golden, 2020). There are also concerns that photovoice methods could inadvertently exclude individuals who are not able to take photos or participate in the discussion (Brown, 2024; Mysyuk & Huisman, 2019). Photovoice has been previously used to explore the health-related needs of individuals with stroke (Balakrishnan et al., 2017; Maratos et al., 2016; Singh et al., 2025; Törnbom et al., 2019). However, the use of photovoice with individuals who have had a stroke warrants consideration because post-stroke impairments that impact communication, function and cognition (Hewetson et al., 2017; Silva et al., 2015; Wallace et al., 2024; Wist et al., 2016). These impairments can impact how people can engage in photovoice methods, such as taking photos and self-expression (Levin et al., 2007; Singh et al., 2025).

Some scholars have suggested that photovoice methods can help involve those in research who “have been systematically ignored in interview-based research” (Hebblethwaite & Curley, 2015). Given the underrepresentation of racialized communities in stroke research (NIH, 2001; Stansbury et al., 2005), photovoice is a promising method for understanding the unique needs of these populations (Balakrishnan et al., 2017). For example, a 2017 study used photovoice to explore the quality of life of individuals from an urban minority population in the US (Balakrishnan et al., 2017; Singh et al., 2025). They noted that participants found taking photos and sharing them in group settings was therapeutic (Balakrishnan et al., 2017). A 2025 study used photovoice to explore the experiences of individuals from racialized communities in Canada related to stroke self-management and recovery (Singh et al., 2025). To enhance accessibility for participants with stroke-related disabilities, the research team adapted photovoice (Singh et al., 2025). These adaptations included options for written interviews, providing interview questions before the interview and focus group, and suggesting alternatives to photo-taking, such as visualizing and describing what the images would depict (Singh et al., 2025). The researchers reported recruitment challenges, which may suggest either a lack of interest from the target communities or a mismatch between the methods used and the needs of individuals (Singh et al., 2025). However, participant perspectives on study methods were not reported (Singh et al., 2025). Participant feedback can provide valuable insights for researchers to understand whether the photovoice methods align with their individual preferences, stroke-related needs, and cultural values and to critically reflect on their methods to inform future studies (Kost et al., 2025).

Thus, this study aimed to understand participants' perceptions of how the methods used in a photovoice study aligned with their preferences, needs, and values, as well as their suggestions for adapting the methods to improve participants' experiences, accessibility and inclusivity. Specifically, we explored the following research questions: (1) What are participants’ perceptions of the methods used in the photovoice study? (2) How do participants think the methods used in the photovoice study could be improved to enhance participant experiences and accessibility and inclusivity?

Methods

Design

An interpretive description (ID) study design (Thorne, 2016) was used. ID adopts a constructivist worldview and is informed by tenets of phenomenology (e.g., understanding subjective experiences), ethnography (e.g., understanding the meaning of human behaviour through interviewing) and grounded theory (e.g., constant comparative analyses), and is used in applied health research to produce practical insights that can have practical applications (Thorne, 2016). According to Thorne (2016), interpretive description is derived from these disciplinary orientations, and “justifies the application of specific techniques and procedures outside of their conventional context” (Thorne, 2016). ID enabled us to generate detailed insights into participants’ perceptions regarding how the methods used in a photovoice study aligned with their preferences, needs, and values. Given its flexibility (Thompson Burdine et al., 2021; Thorne, 2016), ID enabled us to interpret findings across multiple interconnected factors, including how individual, cultural, and stroke-related factors may shape participants’ experiences in the photovoice study. We followed the Standards for Reporting Qualitative Research (SRQR) (O’Brien et al., 2014). Ethics approval was obtained from the University of Toronto Research Ethics Board (Protocol number: 42917).

Photovoice Study

The findings of the photovoice study, which aimed to explore stroke-related experiences and the needs of racialized individuals in Canada, are presented elsewhere (Singh et al., 2025). Figure 1 presents an overview of the methods used in the photovoice study. The photovoice study recruited participants using electronic and physical flyers distributed through various organizations, including community-based organizations that provided stroke services and/or culturally tailored services, religious centers, and a culturally tailored newspaper. The flyers were available in English as well as translated and culturally adapted versions for different communities (e.g., South Asian and Chinese). A 60-minute initial interview was conducted to explain the study, including the photo-assignment and photo-taking ethics and tips, and to gather demographic information. Participants were instructed to gather photographs over seven days to respond to the photo-assignment questions (see Figure 1) (Otterman et al., 2019). A photo-assignment is commonly used in photovoice studies to establish a theme that participants express or portray through photographs (Cabassa et al., 2013; Hergenrather et al., 2009; Otterman et al., 2019). Individual and group discussions are employed in photovoice studies to engage participants in discussions of both individual and collective issues (Cabassa et al., 2013; Wang, 1999). After taking photos, participants met with a researcher for an hour to discuss their photos and explore their experiences and needs related to stroke. They were invited to a two-hour focus group to engage in a group-level discussion about stroke-related needs and potential solutions to address unmet needs (Cabassa et al., 2013; Wang, 1999). Participants received a $20 gift card after each study activity ($80 total if they completed all activities: initial interview, individual interview, focus group, and post-photovoice interview).

Figure 1.

Methods used in the photovoice study

Recruitment

We used convenience sampling to recruit past participants (Golzar et al., 2022). Participation in the current study was included in the original information and consent provided to participants during the photovoice study. After completing the photovoice study, participants were invited to participate in this study via email and/or verbally. Our criteria for determining when no further sampling was necessary were limited to those who responded to our email. We did not seek any additional participants beyond past participants, as our intention was to capture their perspectives on the photovoice method. Participants were over 18 years of age, impacted by stroke (i.e., living with stroke or a stroke caregiver), independent or residing in assisted living in the community (i.e., not currently hospitalized) in Canada, and self-identifying as an individual from a racialized community. Caregivers were included as their lives are also significantly and often negatively impacted by the stroke (Maggio et al., 2024). An advisory committee composed of individuals with lived experience of stroke and leaders from community organizations that serve individuals with stroke and/or diverse populations reviewed and refined our recruitment materials, interview guides and honorarium amounts.

Data Collection

Verbal informed consent was obtained from participants and documented before data collection. Data were collected using Zoom by a research assistant. Participant details, such as age, ethnicity, and gender, were recorded verbally. Participants were also asked about their comfort level with technology, as the photovoice project involved using a camera and sharing photos with researchers via email or screen sharing. They then participated in a semi-structured interview to discuss their perceptions of photovoice and how the methods could be improved to better meet their needs, as well as more broadly for people with stroke and racialized individuals. A semi-structured interview guide, refined iteratively to explore interesting ideas (Smith et al., 1995), was used to facilitate the interview discussion (Supplemental material 1). Participants were offered more time and could respond in writing via chat box, if needed, to express themselves comfortably due to communication challenges (Luck & Rose, 2007). These interviews were audio-recorded and transcribed on Zoom; the transcripts were reviewed and revised for accuracy.

Data Analysis

HS and KMK conducted the analysis following Thorne’s interpretive description analysis approach. HS and KMK reviewed all transcripts and independently coded short data segments from all the transcripts in NVivo 15 based on the preliminary codebook. The codebook allowed us to organize and capture data specific to the photovoice study methods (see supplemental material 2). The coded data were compared to ensure all relevant data were captured. Both researchers were involved in identifying patterns and relationships in the data, and in creating descriptive and interpretive themes and subthemes. For instance, the preliminary codes ‘honorarium’ and ‘recruitment’ contained expanded subthemes ‘Honorarium: appropriate or insufficient?’ and ‘Opportunities to enhance recruitment in a photovoice study’, integrating our interpretive insights.

Reflexivity

Data collection was conducted by the research assistant, with analysis by HS and KMK and was supported by the broader research team. We acknowledged how that identities, prior relationships with the study topic and familiarity with the participants could influence data collection and interpretation. For instance, the research assistant (a man, an occupational therapy student with experience in qualitative interviewing) previously interviewed three participants during the photovoice study, potentially impacting their comfort and openness to share constructive criticisms about the study methods. Moreover, his lived experiences as a racialized person may have also influenced interactions with participants, particularly those from similar cultures.

HS is a woman Assistant Professor with expertise in qualitative research and experience in photovoice. As a racialized person, HS’s lived experience shaped her interest in this topic and interpretive lens. As the Principal Investigator on the photovoice project, she was not involved in this data collection, as we did not want her role to influence participant responses. However, her involvement in data analysis may have increased the risk of overlooking negative experiences and paying more attention to positive ones. To minimize this, HS noted personal emotions, thoughts and ideas while reviewing all transcripts in detail to critically reflect on her interpretations and assumptions and engaged in peer debriefing with the research assistant, who conducted the interviews. KMK, a white female Associate Scientist was not closely involved in this study’s design or data collection, reducing the risk of overlooking negative experiences while prioritizing positive ones and enhancing the rigour through triangulation (Shenton, 2004). These different perspectives allowed for critical reflection and triangulation in interpreting the findings.

Enhancing Credibility

The following strategies, established by Thorne (2016), were used to enhance credibility: epistemological integrity, representative credibility, analytic logic, and interpretive authority (Thorne, 2016). Epistemological integrity entailed ensuring consistency in the research process and epistemological stance (Thorne, 2016). For this study, we adopted a philosophical stance of constructivism that aligned with our study aims, design, data collection and interpretation (Buhlmann et al., 2022; Thorne, 2016). We involved multiple researchers, including those who had qualitative research expertise, in informing our study design, aims, methods and analysis (Lyons et al., 2024). One of the researchers involved in data analysis was not closely involved in this study’s design or data collection, reducing the risk of overlooking negative experiences while prioritizing positive ones and enhancing the rigour through triangulation (Shenton, 2004). Representative credibility is the appropriateness of the sample/participants in relation to the theoretical claims made in our study (Thorne, 2016). We enhanced representative credibility by selecting participants who were most representative of our study aims. Our goal was to capture the perspectives and experiences of these specific participants within a single photovoice study, which is appropriate given our sample. While acknowledging the limitations of our small recruitment pool, we explored participant experiences in multiple ways: as individuals impacted by stroke, as members of racialized communities and as research participants in general. To enhance analytic logic, we ensured that our interpretations are grounded in the data by involving two researchers in data analysis, and including verbatim quotes to support interpretations (Sweeney et al., 2013; Thorne, 2016). Interpretive authority was enhanced through reflexivity during the data analysis process. Additionally, peer debriefing meetings were conducted to manage assumptions about participant experiences in the study (Janesick, 2015).

Results

Fourteen of the 19 participants from the photovoice project participated in this study. The others did not respond to the email invitation, and therefore, we are unable to ascertain why individuals chose not to participate in this study. This study included people impacted by stroke, including people living with stroke (n = 11) and stroke caregivers (n = 3); see Table 1. Most participants (n = 13/14) reported being “very comfortable” or “somewhat comfortable” with using technology, while one responded, “I don’t know.” Interviews were an average of 42 min, ranging from 25 to 67 min.

Table 1.

Participant Characteristics

	People living with stroke	Caregivers
Number, %	11, 79%	3, 21%
Age range (years)	34–90	22–60
Gender	5 women	2 women
Gender	6 men	1 man
Were you born in Canada	2 Yes	1 Yes
Were you born in Canada	9 No	2 No
Self-reported ethnicity	Indian (n = 4)	Indian (n = 1)
	Pakistani (n = 1)	South East Asian (n = 2)
	Chinese (n = 2)
	Caribbean-Jamaica (n = 1)
	African (n = 1)
	West Indian-Jamaica (n = 1)
	Southeast Asian (n = 1)
Do you need help from someone else because of limitations in the use of your hands or fingers?	5 Yes/sometimes	N/A
	6 No	N/A

Three themes are described below. Participants’ perceptions and experiences in the photovoice study were shaped by their multiple intersecting identities as individuals who were living with various stroke-related impacts or stroke caregivers, as individuals from racialized communities, and as research participants. While some findings were unique to the photovoice study, participants discussed broader insights about their experience that extended beyond it. Throughout the results, participants emphasized the importance of flexibility in the photovoice study methods and research more broadly to effectively adapt to meet their diverse needs and preferences. This sentiment was captured by Participant 04: “people are different…There are a group of people who would really be interested to participate no matter what you present, and there will be a group who might not be interested because of their condition. No matter what you do. I-, I think because people are just different.”

Theme 1: Motivators, Enablers, Barriers and Opportunities to Enhance Participation in a Photovoice Study

Participants described the enablers and barriers to participation in the photovoice study (subtheme 1a) and opportunities to make the study more inclusive and accessible to individuals from racialized communities and those impacted by stroke (subtheme 1b).

Subtheme 1a: Factors That May Have Encouraged or Discouraged Participation in the Photovoice Study

Participants shared multiple reasons for participating in the photovoice study, including a desire to influence change in stroke programs (e.g., make them more culturally sensitive), the incentive of a gift card honorarium, and the opportunity to share their wisdom and experience as someone living with stroke. Participant 4 explained, “I’m not a new stroke survivor, I’m a kind of old stroke survivor, so I know a lot of stuff.” Participants indicated they heard about the photovoice study through online channels (e.g., stroke support group’s Facebook group, community organization’s website), newsletters, and word-of-mouth. Participant 1 shared that they heard about the study in a community group where another participants who “found it really useful and beneficial to share their journeys and talked about it in the group and that inspired other people to participate” (Participant 01). Participants identified several barriers that may have limited the participation of others in the photovoice study. Some barriers were specific to individuals from racialized communities and/or people with stroke, while others were applicable to research participation more broadly. First, they noted that our recruitment flyers lacked information about the study purpose and use of results. Additionally, the flyer did not indicate the availability of translation or written interviews, potententially deterring non-English speakersor those with communication challenges. According to participants, technology comfort and access may also have been a factor because the photovoice study involved online meetings, camera use, and sending photos to researchers. In addition, participants indicated that some individuals may perceive the number of meetings in the photovoice study as too many, time-consuming or too complex: “[people may] not have time to think about these things” because “they are struggling to put food on the table… they’re doing…work” (Participant 14).

Participants explained that while hospitals may be ideal locations to advertise recruitment and reach diverse audiences, recruitment for studies in community settings was more challenging as there was no central location to share information about studies with the public. As a caregiver, Participant 01 explained, “we’re so busy, we don’t always have the means of knowing where to look for these studies or knowing that they even exist.” Participants suggested that addressing these barriers may increase interest from diverse communities in stroke research studies, such as the photovoice study.

Subtheme 1b: Opportunities to Enhance Recruitment in a Photovoice Study

Participants suggested different ways that researchers can enhance recruitment in a study, such as the photovoice study. Participants suggested researchers should share information with community stroke program leaders, brain injury associations, and peer support providers to disseminate in multiple formats, including word-of-mouth and online. In addition, they suggested posting the study flyer in malls, on public transit, and in the waiting rooms, elevators, cafeterias, or lobbies of health and rehabilitation clinics, such as the offices of family doctors, physiatrists, neurologists, or other health providers involved in the stroke care continuum. Participants also shared more targeted strategies to recruit racialized communities, such as distributing study information in places frequented by the target community members, including places of worship like mosques, temples, synagogues, churches, and cultural events and festivals/organizations. Participant 5 shared that the study flyers could be shared in:

“the community programming programs that serve…the demographics…a lot of [racialized people] have different, like religious practices…some people might think it's like inappropriate, but I think a lot of religious leaders of that cultural background probably would respect the efforts to increase diversity within research studies that aim to improve health outcomes for adult populations…my family, like is a Muslim family so my parents like really respect, like, Imams, that’s what they're called in, like mosques, for example. So, if you know, there were researchers that we’re collaborating with, leaders of those community organizations or like, like religious leaders, that’s one way I think.”

It was acknowledged that recruiting at only one or a few of these locations would exclude many people who did not often visit them. Participants suggested that recruitment through social media should be combined with these other approaches because social media and technology-related recruitment were not accessible to everyone. Finally, participants explained that research participation was complex and impacted by complex historical and systemic factors experienced by some racialized communities. As such, participants indicated that it was important to explain on study flyers how their data would be used to improve stroke care and a longer-term commitment from researchers was needed to engage these communities. For example, participants recommended that researchers physically visit communities with representatives from those communities and speak directly with them about the study to build trust and foster relationships over time. One participant noted that relationship building could take months, as negative healthcare and research experiences may lead to fear and discomfort about research participation among racialized communities.

Participants made specific recommendations on improving the recruitment flyer to attract more attention from people with stroke. They recommended clearly indicating the eligibility requirements and study adaptations (e.g., written interviews, provision of camera). Moreover, participants suggested that translating flyers into multiple languages would reduce language barriers. Participants recommended using bright but not overstimulating colors, along with a light background, large bold font, and images, may attract more attention while being accessible to individuals with visual impairments. They emphasized the importance of highlighting the direct (e.g., honorarium) and indirect benefits (e.g., sharing their experiences). One participant suggested that a phone number to text or call with tear-away tabs was more accessible than email, while another indicated that Quick Response codes could be helpful. Participant 08 highlighted that while these multiple methods may increase the reach of study information to people, there may be some who were simply not interested in participating.

Theme 2: Meeting Diverse Participant Needs and Preferences in the Photovoice Study

Participants raised several important considerations regarding how researchers could better meet their needs and preferences and/or those of others in terms of the study’s structure and logistics (subtheme 2a), photo-taking and individual interviews (subtheme 2b), and focus groups (subtheme 2c). Some considerations were specific to photovoice, while others for research in general, suggest the need for individualized and flexible approaches.

Subtheme 2a: Diverse Preferences and Needs Regarding the Study’s Structure and Logistics

Participants expressed diverse opinions about the number of meetings in the photovoice study, the time intervals between them, and the online format. Some felt that additional individual interviews could benefit some people who may be hesitant to share their thoughts due to past stigma, discrimination or post-stroke fatigue. Participant 3 explained,

“someone who’s been highly stigmatized in the medical community… They’re already battling fatigue and over-stimulation. And then you meet them for the first time for an hour and a half hour, two hours and ask them a bunch of very personal questions and sometimes they’re not that quick to open up…they can’t think even if they want to…. I’ve worked with a lot of different people with very severe brain injury…it took days to get it out of them, like literally 4 h calls, three times a week…”

In contrast, others believed there were too many meetings and recommended reducing their number. Participants also expressed concerns about forgetting key information because of the long intervals between individual interviews and the focus group. Specific suggestions included having shorter time intervals between meetings, one consistent interviewer and clearer explanations about the study connections. Multiple formats of communication (e.g., written and verbally) would allow participants to refer back to the information if they forgot what researchers had shared with them verbally. Several participants preferred the online format of the photovoice study due to its accessibility. One participant indicated she preferred having her camera off during the focus group session due to post-stroke fatigue, “I was in bed and like I had my hair wrapped.” However, some participants felt that meetings, especially the focus group, should be held in person to facilitate easier reading of body language and connection with others face-to-face. If they had to participate in person, they indicated researchers should provide a higher honorarium to cover travel costs.

Subtheme 2b: Sharing Individual Experiences Through Photo-Taking and Individual Interviews

Participants reported enjoying taking photos and participating in individual interviews during the photovoice study. Participants felt that the photos gave them a chance to express their thoughts more comprehensively than they could in a verbal interview. Participant 08 shared, “When you tell a story, there’s not a lot of impact. I like when you ask for pictures because they represent something and connect to the experience.” Participant 8 also appreciated that the photo assignment questions mostly focused on the positive aspects of stroke recovery: “Pictures can be sad and hard to look at, but the photos I took bring courage and hope—a new idea, a new perspective.” Some participants appreciated the option to use older photos from their phone gallery because physical stroke-related challenges (e.g., dexterity, vision) made it difficult to take photos. For instance, a participant explained, “some people, depending on their type of stroke, may have a lot of rigidity or tightness in one side where their fists are clenched…so they may not actually be able to hold the phone with two hands.” One participant voiced that he did not like taking photographs, so he participated by reflecting on the photo-assignment questions without actually taking photos. Another participant did not feel comfortable sending her photos to the research team but shared them during the interview via screenshare. Whereas some participants found the study “was enjoyable and easy” (Participant 04), others personally had some challenges with taking photos. For instance, one photo-assignment question asked participants about daily challenges, which some found emotionally challenging. Additionally, some participants thought topics like cultural needs were hard to capture through photos. One participant also recommended more detailed instructions on sending photos to researchers, as they had difficulty doing so and needed assistance from their family. Although researchers attempted to provide only a few examples of the types of photos participants could take to avoid influencing participants’ photos, Participant 09 would have appreciated more guidance on what to capture. While most participants found one week sufficient for taking photos, some suggested extending it to two weeks for people with busy schedules.

In terms of the interviews, many participants expressed appreciation for receiving the interview questions before the interview. Participant 1 thought the interview questions were comprehensive: “I think you covered everything. The questions were great; they were really thought out and painted a good picture for the conversation. I found them thorough and detailed. To be honest, I don’t think anything was missed.” Suggestions for improving the interview process included avoiding excessive questions or deviations from the interview guide, particularly when speaking with individuals with communication or cognitive challenges.

Subtheme 2c: Meeting Diverse Needs and Preferences in a Photovoice Focus Group

Participants found the use of PowerPoint used during the photovoice study to display the photos and questions was helpful to recall questions. Participant 04 remarked, “if I didn’t remember [the question], I could just reread it. I didn’t have to remember everything. I thought that was really helpful.”

Some participants suggested ways to improve the photovoice focus groups by grouping people based on similar impairment or functional ability levels: “a group of people who can communicate well, a group with mobility issues, and a group that may have difficulty speaking. This way, everyone in the group shares similar challenges” (Participant 08). Participants also expressed mixed feelings about grouping individuals from multiple cultural backgrounds in the same photovoice focus group. While some appreciated the opportunity to hear different cultural perspectives, others noted that individuals from certain cultures may feel uncomfortable sharing their perspectives due to stigmas. Participants also mentioned that it was hard to have a group discussion if photovoice focus groups had too few participants (e.g., two or three).

Participants had differing opinions and preferences for discussion facilitation. Some participants preferred pauses for reflection during the discussion, others felt that these pauses added pressure to respond, especially those with communication challenges. One participant remarked, “I think many people with brain injuries lose some confidence because they can no longer trust their brains. They often wonder what’s appropriate and whether someone might judge them or think they’re stupid. There’s so much anxiety surrounding it—when you’re not sure if your thoughts are correct, it adds stress.” To address this concern, one participant suggested that facilitators should jump in more quickly when someone was providing short answers or asking more direct questions. Participants also suggested that facilitators revisit previous questions and ask participants if they have anything to add, which would be helpful for people with recall challenges.

Participants recommended that researchers display countdowns for each question instead of simply stating the time allocated for each question so that participants can refer to how much time is left. They also suggested that the photovoice focus groups should begin with rapport-building activities to create participant connections. One participant also stressed the importance of everyone being on or off screen together, including note-takers. Another suggestion was to check in with participants at the end of the photovoice focus group to provide closure, similar to practices in Indigenous circles: “In Indigenous circles, they do a closing where everyone goes around the room and shares how they feel. The Indigenous professor said that while you want participants to open up, you can’t leave them in an open state; you need to help them close back up.” Additionally, they recommended that researchers focus on positive aspects during group discussions and start with something uplifting before addressing challenges and solutions because “some things may trigger some people” (Participant 07). In addition, some participants found it challenging to think of solutions to address their unmet needs, which was one of the objectives of the photovoice focus group. One participant asked, “What would make it better? I don’t know. Honestly, I don’t know how to make it better… Another participant and I both said, ‘We don’t know,’ because we didn’t really know where to start.” Overall, participant suggestions provided insights on how to tailor the photovoice focus group to better meet participants’ individual and collective needs and preferences within this context.

Theme 3: Benefits of Study Participation

Participants shared their thoughts about the direct and indirect benefits of participating in this study (subtheme 3a) and their opinions about the honorarium (subtheme 3b).

Subtheme 3a: Perceived Direct and Indirect Benefits (or Lack Thereof) of Participating in the Photovoice Study

Participants explained that the photovoice study allowed them to express themselves and share their stories. Participant 05 found unexpected enjoyment from the photovoice study: “I really liked the photo-elicitation aspect of it. I didn’t expect to enjoy it as much as I did because it brought up a lot of personal experiences I wouldn’t have shared otherwise. The photos emphasized the importance of what I captured. They triggered memories of specific experiences.” Some participants appreciated that the focus groups created interaction with others from across the country and fostered a sense of connection and fulfillment. Participant 01 said, “Being able to talk with other people from across Canada and Ontario who were in the same space was really fulfilling and meaningful to me. I had a great time and really enjoyed it.” Another benefit for a participant was that this study provided them with an opportunity to practice their speech, offering cognitive stimulation and a valuable learning experience.

Participants also indicated that the aims of this study and the issues researchers were addressing in the photovoice study were important to them, and by participating, they hoped to contribute to improving stroke services. However, one participant raised concerns about the generalizability of findings from a photovoice study because the issues and concepts captured may not be reflective of the issues relevant to broader ethnic minority communities: “You can’t really say that just because this group is an ethnic minority, everything will be the same. It will still vary.” Others reflected that their participation did not provide any direct benefits beyond the honorarium. Participant 10 remarked, “I’ve done some discussions based on one of those pictures. But have I really gained anything? I think it’s very theoretical… Nothing concrete that will, you know, miraculously recover stroke victims and make them 100% normal.” Nevertheless, Participant 10 indicated they would likely participate in a similar study again. To enhance the direct study benefits, one suggestion was that the focus group sessions could be more educational, giving participants the chance to directly benefit from learning, such as understanding the background of the issue. Specifically, Participant 05 suggested that researchers could include “more statistics” instead of simply stating that perspectives were underrepresented to better grasp the issues at hand.

Subtheme 3b: Honorarium: Appropriate or Insufficient?

Participants had different opinions about the honorarium, a $20 gift card per meeting for participating in the initial meeting, individual interviews, and focus groups. Several participants indicated that this honorarium was of interest to them and believed that this amount would encourage others to participate. They felt that having an honorarium was important because it showed appreciation and provided them with a direct benefit from the study. Some participants, including Participants 05, 04, 01, and 03, stated that the honorarium was appropriate, reasonable, and sufficient. They compared it to other research studies they had participated in that offered less compensation (e.g., $10–$15 per hour). Participant 01 expressed gratitude, saying, “I felt very grateful, and I know there are a lot of studies that don’t offer that kind of compensation, so I just felt really humbled and really thankful that that was even an option that was offered. And yeah, I’m just so grateful for you and the study for doing that.” On the other hand, some participants felt that the honorarium was insufficient, considering that the minimum wage was $17, inflation was high, and other research studies they participated in offered more (e.g., $25–$30 per interview). Participant 09 specifically suggested that the honorarium be increased to between $40 and $60 per meeting. Another participant stated that they would have preferred cash rather than gift cards, but cash could complicate tax reporting since it needs to be claimed as income. Another participant suggested that the amount of the gift card should be based on the length of the sessions, as the duration of meetings in this study varied while the honorarium remained the same.

Discussion

Our study aimed to understand participants’ perspectives about the methods used in the photovoice study, including how it aligned with their preferences, needs, and values, and their thoughts on how these methods could be improved. While these insights are based on the experiences of participants in a single photovoice study, they encourage researchers to critically reflect on their methods and how they can enhance inclusivity, accessibility and alignment with the diverse needs and preferences of their target participants. These insights suggest the need to embrace flexibility and individualization within the photovoice study methods and research methods in general.

Participants desired more flexibility in the photovoice study methods to meet diverse needs and preferences. While our advisory committee worked with us to add flexibility to our study design, recruitment, and informed analysis, we recognize, based on participant feedback in this study, that we could have incorporated additional flexibility into our photovoice study methods. Participants suggested that we could have personalized our methods and approach by explicitly and more regularly asking each participant what works best for them and adapting our methods for each stage accordingly. This approach could better support them in representing their realities through the photographs and narratives, which is a key photovoice goal. For example, researchers may need to ask participants how much time they need to take photos rather than providing a standard timeline, given that stroke-related impairments and personal circumstances differ among participants. A longer time commitment from researchers may have been valuable in building trust with some individuals before, throughout, and after the study is completed. This trust-building may help overcome distrust in research and fears related to research participation among racialized communities, such as concerns about scams or immigration status (Getrich et al., 2013). This finding underscores the importance of researchers critically reflecting on their methods and incorporating flexibility and personalization into their research designs while considering time and budget constraints (Benz et al., 2024; van Assche et al., 2023).

Despite the key goal of photovoice being for participants to represent their realities through the photographs and narratives (Wang & Burris, 1997), our findings revealed that photographs may not be an appropriate means for self-expression for all individuals. This finding aligns with previous research, which acknowledges personal preferences as well as other barriers, such as the cognitive demands and technical requirements associated with photovoice methods (e.g., taking photos), which may be a barrier for some individuals (Golden, 2020). For example, while taking photos and participating in verbal discussions may not be suitable for all individuals with stroke, adaptations could be made. Focusing on positive aspects of stroke recovery could be helpful in the photo assignment to avoid traumatization (Ng et al., 2024), particularly considering that some individuals from racialized communities may have experienced racial discrimination that can elicit posttraumatic stress (Polanco-Roman et al., 2016). While we accommodated one participant’s preference of omitting photo-taking to enable participation, it raises a question: at what point does the participant’s involvement no longer align with the principles of a photovoice study? Thus, an important consideration is how to ensure that the adaptations maintain rigour and that the study design and implementation are cohesive with the method’s intent (Cardona & and Joshi, 2007; Lê & Schmid, 2020; van Assche et al., 2023). Another goal of photovoice is to engage participants in critical self and group reflection (Wang & Burris, 1997). Based on participant perspectives shared in this study, participant groupings may have impacted group discussions. In the photovoice study, participants of different ethnicities were grouped within the same focus group. A previous study examined how group composition, in terms of whether ethnically homogeneous or heterogeneous, affects focus group discussions (Greenwood et al., 2014). Their findings indicated that different perspectives could emerge from both types of groups. In some cases, having a commonality (e.g., shared experience of stroke or stroke caregiving) can outweigh differences among group members (Greenwood et al., 2014). However, according to Greenwood and colleagues (2014), participants in homogeneous groups were more likely to share comments that were more ‘controversial’ about ethnicity-related differences, while heterogenous groups discussed topics not specifically related to culture or ethnicity (Greenwood et al., 2014). Given these insights and our findings, homogeneous focus groups in terms of ethnicity and stroke-related impairments (e.g., aphasia) may, at times, create a more comfortable space for critical group and self-expression. Another insight from this study is that, rather than photovoice group-based discussions, individual interviews may be preferred by some individuals due to concerns about privacy and confidentiality (Ng et al., 2024).

While not our aim, participants questioned the generalizability of our study results, including whether photovoice could adequately capture the experiences and needs of all racialized communities. As well, how the findings from the photovoice study can inform meaningful changes to stroke services. Nykiforuk and colleagues (2011) had similar concerns when reflecting on their photovoice study, questioning whether the individuals who participated in their research truly represented their community and whether photovoice is a method that can capture community needs versus individual needs (Nykiforuk et al., 2011). These insights warrant us to think critically about participants’ understanding of the generalizability, as well as the impact of a photovoice study and how researchers could discuss this with participants.

Photovoice is often described as an approach for capturing the needs of a community or group (Anderson et al., 2023; Dixon & Hadjialexiou, 2005; Harley, 2015; Mamary et al., 2007; Miterko & Bruna, 2022; Wang, 2006). However, many photovoice studies have explicitly stated that their intent is not to generalize (Edwards et al., 2022; Lindhout et al., 2021; Swahn et al., 2025) as they are often conducted with small and purposeful samples (Shumba & Moodley, 2018; Smith et al., 2023). Some scholars have argued the priority or intent of qualitative studies is not to generalize, but others have differentiated between the type of generalizability in qualitative studies compared to that in quantitative studies (Drisko, 2024; Polit & Beck, 2010; Smith, 2018). While statistical-probability generalization cannot be attained through qualitative research, other types of “generalizabilities” may be possible, such as transferability, analytical generalizability and intersectional generalizability (Smith, 2018). Researchers should carefully consider and determine if/which type aligns with their research approaches and questions (Polit & Beck, 2010). For instance, transferability, which occurs when readers apply findings or concepts from one context to another based on their relevance (Drisko, 2024), may be more relevant in a photovoice study (Natafgi et al., 2024). This information should also be clearly communicated to research participants to reduce unclear expectations about a study’s generalizability. Another consideration is that many photovoice studies.

While we established the amount in consultation with our advisory board, some participants perceived that the honorarium amount was still low, which urges us to reconsider what an appropriate honorarium amount is and how researchers should determine this in a photovoice study that involves extended engagement (e.g., multiple meetings) and efforts (e.g., photo-taking). Honorarium or payment is often provided in photovoice studies to demonstrate the value of participants’ time and contributions (Ng et al., 2024). There is no standard amount for photovoice studies, and varying honoraria (e.g., $10–20 per session) have been reported (Ng et al., 2024). According to Resnick and colleagues (2015), there are multiple approaches to determining an appropriate honorarium amount, each with its own advantages and disadvantages (Resnik, 2015). Moore & colleagues have called for more transparency and reporting by researchers on the amounts of payment or honorarium provided to participants to assess their appropriateness and for researchers to examine how participants perceive these values, as perceptions of what is fair can vary among participants of different cultures (Liu et al., 2019; Moore et al., 2023). Researchers should also consider institutional guidelines and participants’ cultural heritage and established traditions (Government of Canada, 2025). Aside from honorarium, participants enjoyed taking part in the photovoice study as the methods allowed them to share their experiences and reflect on their progress. This finding aligns with results from other photovoice projects, where participants also report experiencing a positive effect from their involvement on self-reflection (Balakrishnan et al., 2017; Dietz et al., 2021).

While our study offers important insights, several limitations and strengths should be noted. First, HS, who designed the photovoice project, analyzed the data. Given this role, there is a risk of overlooking negative experiences and paying more attention to positive ones, despite using strategies, such as memoing and peer debriefing, to reduce this risk. Despite this limitation, this study provided our team with a valuable opportunity to critically reflect on our methods of participant engagement and consider ways to improve them. Second, the research assistant who conducted the interviews was known to three participants in this study from their involvement in the photovoice study. While some participants may have been more comfortable with the research assistant due to prior familiarity, others may not have been comfortable sharing constructive or negative feedback about these interactions. Future studies like this may benefit from data collection and analysis conducted by individuals who were not involved in the initial project. Third, recall bias may be a concern as these interviews were conducted at different times after participants completed the project. Interviews were conducted for three months (n = 9), four to six months (n = 2), and over a year (n = 3) after participants completed the photovoice project. Additionally, while we aimed for diversity, certain groups remained underrepresented, including those who are new immigrants, not fluent in English or not comfortable with technology. Participants were all English-speaking, and most were comfortable using technology. These limitations and strengths are important to consider when interpreting our results.

Conclusion

Our study provides considerations based on the experiences of participants from racialized communities who have been impacted by stroke and participated in our photovoice study. Our study findings suggest that researchers conducting a photovoice study may need to explore whether flexible and individualized methods would be beneficial to racialized participants with stroke in their studies. The specific barriers and opportunities to meet participants’ individual needs and enhance inclusion and accessibility reported in this study may serve as a useful starting point for researchers in critically evaluating their own photovoice methods.

Supplemental Material

Supplemental Material - Reflections From Participants Who Participated in a Photovoice Study: The Importance of Flexibility and Individualization

Supplemental Material for Reflections From Participants Who Participated in a Photovoice Study: The Importance of Flexibility and Individualization by Hardeep Singh, Kristina Kokorelias M, Jill I. Cameron, Sarah Munce, Heather Colquhoun, Carolyn Steele Gray, Terence Tang, M. Patrice Lindsay, Michelle Nelson LA in International Journal of Qualitative Methods

Footnotes

Acknowledgements

We thank the participants for their time in this study, and research assistant for supporting data collection. Grammarly, Microsoft Office spell check and Google Docs spell check were used to check for spelling, grammar and punctuation and improve writing clarity and conciseness. Endnote software was used for referencing.

ORCID iDs

Hardeep Singh

Kristina M. Kokorelias

Sarah Munce

Terence Tang

Ethical Considerations

Ethics approval was obtained from the University of Toronto Research Ethics Board (Protocol number: 42917).

Consent to Participate

Participants provided verbal informed consent to participate in this study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this project is provided by the Heart & Stroke Foundation of Canada’s Grant-in-Aid and New Investigator Award to HS. HS also held the March of Dimes Paul J.J. Martin Early Career Professorship in the Department of Occupational Science & Occupational Therapy at the University of Toronto.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The data from this study are not publicly available due to privacy and ethical restrictions, but are available on request from the corresponding author.*

Supplemental Material

Supplemental material for this article is available online.

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