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Abstract

Background: Subject Matter Experts (SME) play a fundamental role in shaping community-based research. Engaging SMEs (Phase 1) prior to community involvement (Phase 2) is imperative for generative and fruitful research. Despite the extensive body of literature on community engagement and the important role of SMEs, this literature is often coupled with a lack of clarity behind step-by-step guides of what that process may look like. Aim: Through Phase 1 of The Needs Evaluation to Learn Valuable Information about Aging in Canada (NELVIA-Can) study, focusing on Black older adults in the Greater Toronto Area (GTA), we aim to discuss the salience and methods behind SMEs as a critical component of community-based research in informing study design and development. Methods: We conducted remote semi-structured interviews with SMEs where they gave input on study materials and procedures. SMEs included those with professional and personal working experiences with Black older adults (e.g., caregivers, academics, healthcare providers, and directors of community organizations). The interviews were recorded and transcribed. A content analysis was conducted with a three-member coding team to better understand the challenges and solution strategies that Black older adults experience, as well as recommendations for the study procedure and potential ways to ensure the study is culturally relevant. Results: Six methodologically insightful themes emerged from the data analysis, including (1) cultural context and cultural safety, (2) awareness of challenges that Black older adults face, (3) tailoring the research process to center the community’s diversity, (4) the critical role of trust and strategies for building trust, (5) uncovering research and healthcare gaps, and (6) intergenerational engagement in creating age-friendly communities. Conclusion: Findings will inform the design of a needs assessment for Black older adults in the GTA, as well as the development of technologies and policies that centralize Black older adults’ needs, preferences, and abilities.

Keywords

subject matter experts content experts community-engaged research collaboration reciprocity endpoint users

Introduction

Community-based initiatives and large-scale collaborations are a growing component of qualitative research in marginalized and under-researched communities (Padilla et al., 1999). While these community-based initiatives are certainly helpful and generative to meaningful change within communities, it is also imperative to consider the bi-directional, continual flow of knowledge generation as a prioritized feature in qualitative research. This bi-directional knowledge generation is often strengthened by engaging with Subject Matter Experts (SMEs) in initial study phases as a preliminary step before the onset of the community study of interest. In this sense, engaging with SMEs can be viewed as Phase 1 in a study before engaging with the rest of the community, known as Phase 2.

While SMEs is a term commonly used in human factors and ergonomics, there are similar terms in qualitative-related fields, such as “Community Advisory Committees” (CAC) or “Community Advisory Groups” (CAG). To begin, SMEs are those with lived expertise on a topic based on their profession. They are deeply instrumental in providing “temporary expertise, guidance, or assessment for a particular technical or functional area” (Cates, 1993; Lamore, 2011, p. 1). To build on this, SMEs serve as repositories of specialized knowledge and experience in a specific domain or research scope, which equips them to contextualize and inform research in ways that are not readily available to generalist researchers. The inclusion of SMEs in topically variegated research is well documented. For example, Zainuddin and Sahrir (2016) note in their study that SMEs shared their pedagogical theories and subject-specific knowledge in informing the development and design of multimedia courseware for teaching Arabic vocabulary. Relatedly, Mucti and Hermansyah (2023) note that SMEs are critical in evaluating and assessing online interactive tutorials for educational purposes before they are shared with students. Furthermore, Gibran et al. (2022) explain how SMEs can generate high-priority research questions in the field of trauma care, thereby equipping and shaping researchers’ research efforts and resource allocation in this field. Despite the extensive body of literature on community engagement and the important role of SMEs, this literature is often coupled with ambiguity and lack of clarity behind step-by-step guides of what that process may look like (George et al., 2015). Because of this lack of clarity, researchers may not employ certain community-based approaches. Given the salience of including SMEs in research (Connor, 2016), the following paragraphs highlight six key reasons why their integration in community-based research is invaluable. This salience was determined based on the available literature on SMEs, which highlights their unique contribution to and role in community-based research.

SMEs enhance the interdisciplinarity of research conducted with roots at the local and community level by exhibiting strengths in informing the study design twofold, namely through their (1) lived experiences in working with and having relationships with the community of interest, as well as (2) their disciplinary background (Amey & Brown, 2005; Tobi & Kampen, 2017).

SMEs’ lived experiences with communities equip them to become endpoint users of the research findings being generated (Hardy et al., 2016). In their strength as endpoint users, SMEs increase the impact of research findings when implemented, particularly for those working in policy and applied practice-relevant areas (Concannon et al., 2018). Similarly, SMEs can operate as a productive force for giving linguistic input around the study design, research, and interview questions. This is important because the concepts used in research may carry quite different connotations across different disciplines (Butters et al., 2000). Even if teams work with the same language, disciplines still have their vocabularies, with terms that have specific meanings (Butters et al., 2000; Hirst, 2003).

Working with SMEs enhances capacity-building to a certain degree by developing local research capacity, raising awareness for research efforts, and building sustainable and diverse networks (Dantec & Fox, 2015). Not only is this beneficial for the community, but it is also reciprocally beneficial for the researchers (Macaulay et al., 1999). In a growing age of academic information overload, researchers and academics often struggle to stay informed within their field, let alone in related fields or outside their fields (Zeng et al., 2020). Researchers can enhance the breadth and depth of their endeavors by collaborating with SMEs from the onset of a research project. Furthermore, including SMEs in preliminary phases of research mitigates power imbalances in the research relationship while also addressing what Cooke & Kothari (2001) call the “tyranny of participation.” The relationship between participation and empowerment or an equal partnership with researchers has recently been ethically problematized (Salway et al., 2015). The liminal space between participant and peer-researcher may exacerbate the pressures to authentically represent one’s community while also fulfilling the obligations and role of a researcher (Chang & Coster, 2014). Thus, participants may risk losing their distinctive roles as community representatives and credibility among community members when simultaneously involved in a research project (Jorm et al., 2007; Levinson, 2017; Liabo et al., 2017). In this respect, participation may not always lead to empowerment. On the other hand, while SMEs may have firsthand experiences working with marginalized communities and could be part of them, their expertise mitigates the exacerbated pressures that community members may feel.

Furthermore, SMEs refine considerations of cultural attunement, cultural diversity and cultural safety in the study materials and preparation alongside their professional expertise, which help create a culturally appropriate study. This is important for a variety of reasons. First, communities are rarely homogenous groups with similar needs and interests; instead, communities are structured by sub-cultural differences, gender, social status, and other socio-cultural factors (Shore et al., 2015). Second, cultural safety must be considered, especially within sensitive topics. Through their expertise and lived experience, SMEs may offer advice to get participants to feel safe and comfortable sharing stories that might not be disclosed in everyday settings.

Finally, SMEs can be instrumental in supporting the study’s recruitment strategy. By involving SMEs in the preliminary phases of research, SMEs can connect research to relevant organizations and potential participants due to their extensive networks and provide introductions and access to participants (Burns et al., 2008; McLennon & Habermann, 2013). Thus, SMEs working in various organizations, such as a recreational therapist in a long-term care home, may agree to ask (or let researchers ask) community members to participate. By extension, SMEs can be asked to help contact “hard-to-reach” population groups (Dennis & Neese, 2000; Stahl & Vasquez, 2004).

In what follows, we aim to discuss the salience and methods behind SMEs as a critical component of community-based research through an example study focusing on Black older adults in the Greater Toronto Area (GTA).

Background: NELVIA-Can Study

To provide a practical illustration of the significance of SMEs in community-based research, we will now delve into a detailed description of our study focusing on Black older adults in the GTA. The Needs Evaluation to Learn Valuable Information about Aging in Canada (NELVIA-Can) study was conceptualized to address the needs of Black older adults in Canada. Ontario has the largest Black population, with most of the population residing in Toronto, Canada (Statistics Canada, 2019). Combined with a rapidly aging population, a research gap exists in understanding the specific challenges that Black older adults face (60+) with respect to completing daily and community activities. Furthermore, it is proposed that novel technology solutions can be designed to support Black older adults to age well in their communities (Brookfield et al., 2020; Wang et al., 2019).

To gain an initial understanding of everyday challenges and potential solutions Black older adults face, we conducted remote semi-structured interviews with SMEs, otherwise known as Phase 1 of our research study. Phase 1 of this research study before Phase 2 involved interviewing SMEs to solidify the activity domains, activities and questions to ensure the materials are catered to Black older adults in the GTA. SMEs included those with professional and personal working experiences with Black older adults (e.g., caregivers, healthcare providers, and directors of community organizations). Phase 2 will involve interviewing Black older adults in the GTA to develop novel technology solutions.

Methods

Recruitment of SMEs

Our complete COREQ checklist for qualitative methodology can be found in Supplementary Material 1. MTH contacted community organizations, associations, researchers and physicians who work with the Black community to inquire about their potential interest in joining the study. The organizations and individuals that agreed to support this work focused on supporting Black Canadians’ health and well-being, focusing on health disparities and inequities; providing health services to individuals in an area of Toronto, which consists of a large Black community; and supporting Black individuals in the Greater Toronto Area regarding their health. We recruited four Black adult SMEs from those community organizations and associations who shared lived experience and expertise with Black older adults. Only four SMEs were selected for this study because we were unable to recruit additional participants during the recruitment process and data collection phase; since MTH contacted associations, organizations, researchers and physicians, the exact number of people who did not participate and their reason for not participating are unknown. Our only available information is those who responded through the associations and organizations. As with any community-based research, strengthening community engagement is critical. Thus, we aim to improve our recruitment strategies in the future and encourage greater participation in this research phase by strengthening community engagement, additional outreach efforts and partnerships.

The roles of the SMEs included the following: caregiver, executive director, program director, and geriatrician. Notably, one SME held overlapping roles as both program director and caregiver for their older adult mother. We recognize as researchers that these dual, overlapping roles enrich the study design and development for Phase 2 of our NELVIA-Can study. As part of this collaborative research process, SMEs served as both interviewers and contributors and are acknowledged as co-authors of this paper if they were interested. Their expertise was integral to the study design, data collection, and interpretation. To maintain the confidentiality of the themes and findings shared, we cannot explicitly link the identity of SMEs to specific themes or findings. This approach respects ethical research principles, particularly those concerning privacy and safeguarding our SMEs’ trust since they are involved in the Black community here in the GTA. However, the collaborative nature of their involvement and contributions is thoroughly reflected and weaved in this paper.

Interview Process and Data Collection

MTH conducted remote semi-structured interviews with SMEs from June 2023 to December 2023 to gather their input on study materials and procedures, including their experiences supporting Black older adults. MTH did not know or have any working relationship with the people she contacted; this connection came after the interview. MTH is a Black woman, professor and researcher with lived experience of being raised intergenerationally by Black older adults. As researchers in this study, we were intentional to ensure that both the interviewer and SMEs share a cultural and lived experience background since research shows that shared cultural backgrounds facilitate a more comfortable and trusting environment and, by extension, increase the likelihood of open communication (Hoogesteyn et al., 2023). To help mitigate bias and ensure consistency during the interviews, the same interviewer (MTH) conducted all sessions. A standardized interview guide was used to maintain uniformity in questions. All interviews were video-recorded and transcribed for accuracy, and a team approach was employed for data analysis to minimize individual interpretive bias. The interviews were conducted over Microsoft Teams or Zoom and ranged between 60-90 minutes.

Materials

Participants were provided with a consent form, a detailed explanation of the study’s purpose and the interview procedure by the interviewer before the interview began. The interview guide (See Figure 1) consisted of questions regarding the following areas of interest:

(1) Lived Experience of Barriers, Limitations and Challenges for Black Older Adults in the GTA

(2) Lived Experience of Resilience and Empowerment (Follow-Up Narratives)

(3) Lived Experience in Working with/ Engaging with/Interacting with Black Older Adults

(4) Facilitators and Strategies

(5) Community Access

(6) Family (or Loved One or Companion) Solidarity/ Advocacy and Security

(7) Activity Categories and Interview Materials

Figure 1.

Sample questions for SMEs from the interview guide.

The interview guide was developed based on a thorough review of existing literature, including studies on technology use among older adults and barriers to adoption (Baltes, 1997; Baltes & Baltes, 1990; Carstensen, 2021; Carstensen et al., 2003; Chen & Chan, 2014; Duke et al., 2018; Remillard et al., 2018; Venkatesh & Xu, 2012). Probing questions and follow-up prompts were employed to delve deeper into specific areas of interest. As mentioned previously, SMEs’ responses were video-recorded and transcribed verbatim. Each SME was provided with the activity categories table in the interview, which described activities within domestic life, health, community and social engagement, transportation, leisure, and daily life (Briede-Westermeyer et al., 2023). This included input on each category, where SMEs had the opportunity to provide any modifications, additions, or deletions based on their expertise and experience. We identified common themes, recurring suggestions and areas of consensus among SMEs. These were used to create a revised, refined and consolidated activity categories chart that integrated and incorporated the input from all SMEs. The revised activity categories chart served as a foundation for study materials and procedures in Phase 2 of our study.

Data Analysis

A three-member coding team (HMB, MG and MTH) conducted a content analysis to gain a richer understanding of the challenges and solutions strategies for Black older adults, recommendations for refining the study procedure and methods for ensuring cultural relevance. We chose content analysis as our preferred method of qualitative analysis since it is a flexible analytical approach that caters to multiple disciplines (Glick et al., 2010) while also uncovering underlying social phenomena and cultural narratives (Güler & Taş, 2020). Furthermore, the quality of our interpretation was substantiated threefold. Firstly, employing three coders in the content analysis enriches and enhances the reliability of interpretation while also allowing consensus-building of codes between coders (Stolper et al., 2023). Secondly, we were intentional to continuously reflect and iteratively change codes and themes throughout the process, creating an iterative feedback loop (Desai et al., 2020). Thirdly, upon pilot testing to refine our coding scheme, we developed clear and comprehensive coding schemes that consistently guided our study process.

This analysis unfolded in three phases on Microsoft Word. Initially, each team member independently reviewed the transcript to acquaint themselves with the data. Subsequently, during the second transcript review, each member developed a “highlight” coding system and generated a list of initial codes that reflected the research objectives. Additionally, themes coded in the interviews unrelated to the research objectives were separately identified and organized. Keywords that recurred were noted as initial codes without deliberate theme groups to allow for organic coding collection.

In the second phase, each member grouped initial codes into themes, focusing on the interrelationship between them. Typically, clear themes emerged from one or more codes. Through an iterative process, thematic maps were created, and members aggregated codes under a related theme. Members then refined theme names by clustering codes and themes together as needed. Following the creation of a thematic map, each member compiled their final thematic analysis in a Word document table. Higher-level themes were bolded in the first column, while subsequent codes were listed in bullet points in the second column (Table 1).

Table 1.

Example Organization of Higher-Level Themes and Subsequent Codes.

Higher-level Theme	Subsequent Code
Use of technology, E-health, and online support	• Intergenerational grandchildren influence on frequency use, adoption of technology, and technological engagement
	• Digital literacy (i.e., issues related to tech-savviness)
	• Adaptation to digital tools
	• Barriers to accessing resources and information about events
	• Mobile apps as supportive aids and strategies
	• The role of communication and accessible formats of communication in technology

Once completed, the last phase involved each member reading through the transcript a third time to ensure no keywords were missed. If any keywords were missed, a new code was created and added under its respective theme. After coding, the coding team met to discuss the process and findings. This process was completed across all transcripts; thus, different themes and codes may have emerged and overlapped.

Results

Overall, four Black adult SMEs were interviewed, including two caregivers, one healthcare provider, and one director of a community organization. Six methodologically insightful themes emerged from the data analysis, including (1) cultural context and cultural safety, (2) awareness of challenges that Black older adults face, (3) tailoring the research process to center the community’s diversity, (4) the critical role of trust and strategies for building trust, (5) uncovering research and healthcare gaps, and (6) intergenerational engagement in creating age-friendly communities.

Cultural Context and Cultural Safety

SMEs shared that cultural context and cultural safety should be prioritized in existing health services, programs, resources and supports. Cultural safety, or Kawa Whakaruruhau, was conceptualized by Irihapeti Ramsden (2002) in the late 1980s and early 1990s as a response to the inadequacies of existing healthcare models in addressing the needs of Māori in Aotearoa New Zealand – here, cultural safety goes beyond mere cultural awareness or competency, but actionable items that are culturally centrifuged to mitigate the needs of the individual and/or community (Curtis et al., 2019). In light of this, one SME, an executive director, pointed out disparities in existing services, sharing the example of Meals on Wheels offering a predominantly European-based diet. This emphasized the need for cultural safety in providing services as well as the importance of traditional and culturally relevant food for Black older adults. The findings cast a vivid light on the gaps in catering to the cultural preferences of this demographic.

“You know, the Meals on Wheels program, for example, that’s gonna bring food to seniors, doesn’t have cultural food that Black people, you know, are really interested in (laughs). So that was a problem where, “Yeah, we could get you Meals on Wheels, but it’s gonna be a very European based diet.” I don’t know, like you know, that is just not appealing to a lot of people.” Executive Director

Another SME, a geriatrician, highlighted the role of spiritual life as a critical anchor in the lives of older Black adults. They emphasized that spiritual practices, often rooted in religion, are vital in gardening a sense of community and well-being among Black older adults. In drawing attention to their experience with caregiver interviews, this SME noted the impactful role of religion in providing support.

“So I think one thing that I don’t see is spiritual life...you know, if I think of my mom, spiritual life is very much an anchor...in some of the interviews we’ve had of caregivers, some who are elderly, caregiver of their loved one, religion plays a role.” Geriatrician

One SME also identified a significant gap in culturally safe respite care services for Black seniors. Existing programs, while providing relief for caregivers, lacked Afrocentric elements, making them less suitable for the diverse cultural needs of the older Black population.

“So one thing that provides great respite is day programs like respite care. But right now it’s not Afrocentric, so we’ve got black seniors that do not see their needs met at all. The food is not their food. The music is not their music. The reminiscing activities are not Afrocentric umm, they don't see themselves represented. It’s not a thing.” Geriatrician

Cultural preferences emerged as a salient factor in the support networks of Black older adults. Another SME, a caregiver for her mother, augmented the significance of cultural connections, suggesting that older adults often rely more on individuals from their cultural background. Here, cultural affinity fostered a sense of familiarity and comfort, which contributes to the overall well-being of Black older adults.

“Culture, community... that’s um, a big one. That’s a very big one because, I mean, most of the people that helped here were White people, not of our culture - Of West Indian culture, which would say that as well, right…” Caregiver

We learned that cultural influence extends to service utilization, with a preference for individuals from the same cultural background. One SME shared experiences where attempts by external services, such as the Community Assistance Centre, initially fell short due to a lack of cultural alignment. This preference influenced her mother’s decisions regarding the type of services with which she chose to engage.

“Yeah, she didn’t trust the way they did clean. She seemed a bit stressed and frustrated that people did not clean the same she did. She did not complain or express her needs. Oh, and then she got her church. She seemed satisfied with the cleaning help provided by her church. They had all these volunteers and these services, like, coming in to clean and then they had some catering services where they would, like, make those boxed meals and deliver to people’s homes. As well, the pastor would make regular visits and perform communion. So she would, you know, sign up for that.” Caregiver

Awareness of Challenges that Black Older Adults Face

SMEs shared that researchers and communities must be aware of the unique challenges that Black older adults face in their daily living and social routines. Two SMEs – an executive director and a program director, and another a caregiver - highlighted the need for strategies to help Black older adults overcome the challenges of maintaining social routines. It became evident that initiatives focusing on transportation support, flexible scheduling of religious activities and creating alternative social engagement opportunities were necessary to address these struggles. Implementing these strategies could significantly alleviate the anxiety and concern experienced by Black older adult women and their social networks.

“And like inside these categories, I think what the women struggle with is main-- maintaining their routines. So, I go to church every Sunday, and all of a sudden, as I get older, it is more difficult for me to do that, then that becomes really anxiety provoking. But I can’t.... you know, as they get older, they’re not able to maintain their social routines. Keep [maintaining routines] in mind [instead of making it a separate category] because it fits almost in every box in there, but I know it’s a big one. Like, you know, if one of the women doesn’t come for like a Wednesday session, everyone is like, “Where is so and so,” right? It’s like, “Is she OK?” You know? Even your social network gets nervous when you can’t maintain those social routines, right?” Executive Director

“But for a lot of older Black women who aren’t partnered, you know, if you’re not in church, there really is not much else to do (laughs). That’s pretty much it...I find it challenging for them to find and identify things to do.” Program Director and Caregiver

One SME identified economic challenges Black older adults face during in-person grocery shopping. Here, overwhelming environments, difficulty remembering lists, and the need for conscious spending due to fixed incomes were central swirling concerns. These challenges highlighted the socioeconomic factors influencing Black older adults’ daily activities.

“Grocery shopping [in person] would be under home maintenance...spending is a thing has to be really conscious of, and I know a number of older folks who, like, they have fixed income. So, they have to really spend mindfully, and sometimes that could be challenging.” Program Director and Caregiver

The findings also delved into the concerns of older Black workers amid technological advancements. One SME identified a perceived disconnect and potential marginalization of older workers in a tech-dependent work environment. Here, the impact of rapid technological changes on job roles and accessibility is discussed.

“Especially for a Black man, you know, working in the city who may have had certain kinds of jobs and worked in certain kinds of areas, how are they being impacted with all this tech stuff all the time? That’s happening outside of their control but impacts how they can work and make money and all these things.” Program Director and Caregiver

One SME shared challenges accessing healthcare appointments, particularly due to transportation and mobility issues. Her mother’s reliance on friends of similar age for transportation to appointments, coupled with the limitations in wheelchair accessibility, hindered the timely completion of essential medical tasks, such as blood tests.

“So getting to hospital and clinic appointments was very challenging... there was probably a bit of pride there too that, you know, you literally have to help her out of her chair. Help her into the car...Her friends were around her age, so they had their own physical issues that would limit them with this type of physical work. The taxis had strict policies around helping someone that’s physically challenged. So she didn’t go to her appointments. She wasn’t able to monitor her health.” Caregiver

One SME highlighted caregivers’ strenuous tasks, from household maintenance to grocery shopping and cooking. The SME expressed the challenge of balancing fulfilling practical needs and spending quality time with their family member.

“And on a Saturday, you know, I’m doing laundry. I’m changing the sheet, I’m washing out the house. I’m cooking. I’m going grocery shopping. So I spend like a whole day, you know, doing instead of spending time with her.” Caregiver

Tailoring the Research Process to Center the Community’s Diversity

SMEs shared that Black communities are not homogenous, and diversity (value systems, beliefs and cultures) must be prioritized within the research process. One SME emphasized the importance of understanding the diversity within the Black community in Canada. Customizing the research approach and including language considerations were essential for engaging with various cultural groups effectively. The results of this study have important implications for older Black adults, particularly in relation to their sense of community.

“Anyway, I say all that to say dependent on which cultural group is dominant in the pool of people you’re interviewing, the way you roll it out will be different... It’s just really thinking about the nuances of that diversity and the Canadian Black population.” Executive Director

Another SME highlighted the diversity in communication styles among older Black adults, acknowledging sensory and cognitive differences. The SME observed the importance of considering different modes of communication, such as non-verbal cues, for effective engagement.

“Some people just use their eyes. Some people reach out. Some people got dementia and different things, so I don't know if it’s… I just say we just stopped to think about different ways to communicate with people.” Caregiver

The Critical Role of Trust and Strategies for Building Trust

SMEs shared that the lack of trust in Black communities stems from a pattern of broken trust systems in medicine. SMES shared strategies for building trust as a means of mitigating this. One SME advocated for a deliberate approach to building trust by spending time and getting familiar with community spaces and organizations. The emphasis is on establishing a connection and rapport, especially when researchers are outsiders. Researchers can dampen the trust gap and facilitate smoother collaboration by investing time in understanding the unique dynamics and challenges of the Toronto Black community.

“And spending some time getting to know those spaces, like getting those organizations familiar with you and building trust... it’s just really working with the organizations.” Executive Director

Another SME emphasized the profound impact of trauma on the mental health of older Black adults. The findings delve into the unique challenges faced by Black older adults, including a deep-seated distrust of conventional medicine and pills. The SME raised questions about bridging the gap between cultural beliefs, such as the preference for plant-based medicine and evidence-based medical practices.

“There is um, a distrust of medicine, of pills...Do we just accept that, you know, we have all the people with blood pressure 200 / 100 high cholesterol stroke? Who are not taking any pill? Are we OK with that? Like, I don’t feel good about. Yeah. So how do we? Because you know, I mean, there’s a belief in plant-based medicine...I don’t know whether we would be having a black pharmacist. I don’t know. Yeah. Yeah, black nurse.” Geriatrician

Uncovering Research and Healthcare Gaps

SMEs shared current healthcare and research gaps that require further exploration based on their “on the ground” roles. One SME identified a significant research gap, particularly in the context of older Black women in Canada. The findings emphasizd the paucity of research within this demographic, which emphasized the need for dedicated attention to their unique experiences, challenges and health-related considerations. The SME emphasized the neglect of healthcare education for older Black women, particularly regarding menopause and post-menopausal health issues. Relatedly, there was a lack of investment in understanding and supporting women through various life stages, leading to limited access to knowledge and resources.

“So, we have very little research on Black women and there’s almost next to none on Black senior women...Not yet. And I mean, I'm talking from Canadian perspectives. The US is always a little bit ahead of us in that respect, but in Canada (clicks tongue), there’s nothing.” Executive Director

“You ask the average Black woman about menopause, and they can't tell you anything... at all unless you’re in it...There’s no research on it and there’s no support to get you, you know, through that phase of your life, let alone post menopause and health issues that elders are experiencing.” Executive Director

The findings shed light on the lack of training and knowledge in medical treatment for older Black adults, leading to instances of neglect and racism. One SME discussed cases where critical health issues, such as gangrene, were disregarded in Black patients. This example, among others, emphasized the urgent need for training programs to address disparities in healthcare. The findings revealed a deep-seated mistrust and distrust of the healthcare system among Black older adults, directly linked to negative experiences and racism. The SME shared that this mistrust often lead to a preference for family care over community or primary healthcare.

“They could be labeled as the angry black people instead of recognizing they have reason to be angry. And they need to be heard. Right. And also, I see lower expectations, a lack of recognition of disease, and Black peoples have had older black person with gangrene in his leg. OK, the skin is black. People have been taught to recognize infection with red skin. So now we’ve got a darker skin when it's inflamed, the foot is stinking like everybody has a nose whether it’s white or black. It stinks! So, it’s a rotten foot. You don't treat that with cream; you need a surgeon.” Geriatrician

One SME also highlighted the geographical disparity in services for the Black population in the Greater Toronto Area (GTA). Despite 60% of the Black population residing in the GTA, there is a lack of adequate services reflecting the Black older adults’ needs. The findings reinforce the urgent need for more inclusive and tailored healthcare services.

“So, you know, you’re talking about 60% of the whole Black population. Our seniors don’t have adequate services that reflect their numbers in that—in that geography.” Executive Director

Intergenerational Engagement in Creating Age-Friendly Communities

SMEs shared the power of intergenerational approaches as a gateway to increased technology and community engagement by older adults. One SME cast a vivid light on the importance of intergenerational engagement in community programs. As an example, the SME shared the inclusive nature of activities such as “Mommy and Me” classes, where grandmothers and aunties are welcomed. This approach reflected the SME’s conscious effort to incorporate diverse and intergenerational family structures while showing the significance of extended family connections.

“We would have a “Mommy and Me” class, and grandmothers and aunties were always welcomed because I have such a background with child welfare, I understand that Black families will always [just] have mommy and daddy...I’m always very conscious of people bringing in the other folks into their definition of immediate family.” Program Director and Caregiver

One SME revealed a strategic approach to engaging seniors by connecting with their grandchildren. The SME aimed to create a ripple effect by focusing on children and involving the entire family in community programs. This strategy reflects a broader cultural pattern of intergenerational connections within the Black community.

“You know, I have definitely seen and noted that [older adults will use technology if their grandchildren have shown interest in it, and not because their grandchildren specifically bought something for them]...So that has been my sneaky way to get the Black moms and Black dads and Black grandparents - by working with their kids.” Program Director and Caregiver

A specific case involving a young adult granddaughter providing support to her grandmother illustrated the diverse ways in which intergenerational relationships serve as a crucial support network.

“I’m wondering whether grandkids come do they come into community and social engagement...Is the granddaughter who is on the call for the grandmother because the parents are working. So you know the granddaughter is 18, 19, 20 who is a support network for the grandparent.” Geriatrician

Discussion

This research illustrates the importance of including SMEs in the preliminary stages of research studies. Our findings indicated that interviewing SMEs was instrumental in informing the next stage of our research study, which involves interviewing Black older adults in the GTA. SMEs echoed themes in (1) cultural context and cultural safety, (2) awareness of challenges that Black older adults face, (3) tailoring the research process to center the community’s diversity, (4) the critical role of trust and strategies for building trust, (5) uncovering research and healthcare gaps, and (6) intergenerational engagement in creating age-friendly communities. The next research stage will integrate and embed SMEs’ shared considerations. Overall, if SMEs had not informed Phase 1 of this study design, we would not have necessarily considered these aspects when interviewing Black older adults.

With SMEs, researchers were given the opportunity to not just collaborate with academics from other disciplines, but develop partnerships with non-academics, such as those working in non-governmental organizations, as health service providers, or in community organizations (Fiore, 2008; Pelfrey et al., 2016). By engaging with SMEs at the beginning of research instead of solely disseminating the findings, SMEs could give research input that aligns with the Black community’s local needs. Furthermore, it can be inferred that SMEs are more likely to feel confident in facilitating the practical implementation of findings since their input was given at the onset of the research process (McKenna & Main, 2013; Shenton & Hayter, 2004). In essence, this approach refined the development of our research study, ensuring it accurately reflects and is supported by local input. Meanwhile, SMEs helped bridge lay perceptions and minimize linguistic jargon to distinguish their community understandings from their professional, applied practices. In our case, this is especially important for effectively disseminating our findings to stakeholders in the research process, such as research participants, endpoint users (i.e., other SMEs) and perhaps wider audiences with the help of social media.

Additionally, SMEs’ expertise alleviated any single perspective from dominating the conversation and ensures a more balanced and comprehensive approach to community-based research (Hamdan et al., 2021). By inviting SMEs to preliminary phases of research, the “tyranny of participation” was dampened, and SMEs’ input facilitated progress for community members to participate more comfortably. Furthermore, our SMEs helped us create a culturally appropriate study that centralized the cultural preferences and needs of Black older adults. SMEs were also beacons of support resources. In our case, SMEs shared resources with researchers (i.e., appropriate service providers, organizations, etc.) in case participants need further help or assistance. Finally, the fact that our SMEs worked in various organizations and upheld different roles was a strength for recruitment. No matter how extensive the personal networks of a research team may be, it is unlikely to render a sample that accurately represents all segments of the community or population of interest. However, SMEs alleviated the issue of representative sampling because of their different organizational backgrounds, personal and professional networks, and lived experiences working in the community.

Ultimately, these findings show the critical role of integrating SMEs in the preliminary stages of research. The collaborative partnership with SMEs contributed to the rich, interdisciplinarity of our research and generated a more culturally safe approach to community-based research (Balazs & Morello-Frosch, 2013). Their lived experience and expertise served as a critical bridge between academic discourse and community understanding, which will enhance the local needs of the Black community. The engagement of SMEs from diverse occupational backgrounds augmented the robustness of our study in relation to recruitment strategies, community engagement and study material development. These contributions augment the importance of collaborative approaches in addressing the needs of the Black older adult community.

Limitations of the Study

It is important to acknowledge that this study had limitations. Firstly, our research project only included four SMEs, which is arguably a small sample size. While CAC tends to be a larger group to inform the understanding of the research project, this does not undermine the richness of information collected. Furthermore, SMEs were not incorporated throughout the study but only at the design stages. This can be mitigated by employing other principles of community-based participatory research, where SMEs are involved in all stages of the research process. Finally, since SMEs’ lived experiences and expertise may have influenced their responses, it is important to consider the potential for respondent bias. However, we recognize as researchers that their positionalities enriched and informed this research. Nevertheless, respondent bias could be mitigated through data triangulation, a common method in phenomenology related to lived experience. Relatedly, participants were required to recall past events and experiences to answer certain questions, introducing the potential for recall bias. Their recollections may have been influenced by current perceptions, emotions, or knowledge, potentially leading to selective memory or misrepresentation of details. This limitation can result in inaccuracies, particularly for events that happened long ago or were not especially memorable. Future research should aim to mitigate this bias by incorporating corroborative data sources or shortening the recall period.

Conclusion

Including SMEs in the preliminary stages of a community study is a fruitful, reciprocal and effective strategy to methodologically tailor the study design and raise awareness for the community’s particular needs. As community-engaged research is a growing body of research, including SMEs is a critical component that deserves further consideration to cultivate meaningful, generative and fruitful research for communities.

Supplemental Material

Supplemental Material - Methodological Insights Involving Subject Matter Experts in Community Research: An Example From a Black Older Adults Qualitative Research Study

Supplemental Material for Methodological Insights Involving Subject Matter Experts in Community Research: An Example From a Black Older Adults Qualitative Research Study by Helana M. Boutros, Michelle V. Goonasekera, Sharon McBean, Mireille Norris, Tamla Matthews, and Maurita T. Harris in International Journal of Qualitative Methods

Footnotes

Acknowledgements

We gratefully acknowledge all SMEs in this study who shared their wisdom and gave valuable insight to support the health and aging of Black Older Adults in the GTA. We gratefully acknowledge Merna Mina, who supported this project by carefully transcribing all the SMEs' transcripts.

Author Contributions

MTH conceptualized the NELVIA-Can study and collected data. MTH, HMB and MG conducted data analysis. The manuscript was drafted by HMB and MTH (MTH wrote the background for the NELVIA-Can study). Finally, the manuscript was revised by MTH and MG. All authors approved the publication.

Declaration of Conflicting Interests

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the AGE-WELL (Aging Gracefully across Environments using technology to support Wellness, Engagement and Long Life) Network.

Ethical Statement

ORCID iDs

Helana M. Boutros

Michelle V. Goonasekera

Supplemental Material

Supplemental material for this article is available online.

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