Factors impacting long-term care and retirement home populations’ participation in immunity research: a qualitative study using the framework method

Abstract

Background

The COVID-19 pandemic had a severe impact on Long-Term Care Homes (LTCH) and Retirement Homes (RH) in Canada. Urgent research was required to understand characteristics of COVID-19 transmission and immunity among this at-risk population, yet the pressures of the pandemic impacted LTCH and RH populations’ capacity to participate in research. We describe LTCH and RH populations’ experiences in and motivations to participating in a COVID-19 immunity study, and explored barriers and facilitators to conducting immunity research within these settings.

Methods

We conducted semi-structured interviews with LTCH/RH staff, their household members, and residents’ caregivers in Ontario, Canada. Interviews were rooted in the Theoretical Domains Framework (TDF). Twenty-percent of data were double coded; the remaining transcripts were single coded and charted into a matrix to identify themes. The TDF was used to categorize factors impacting study participation. These factors were mapped to the Capabilities-Opportunities-Motivation and Behaviour (COM-B) model to recommend strategies to engage LTCH/RH populations in future research.

Results

Twenty-four participants (12 staff and staff household members, 12 caregivers) completed an interview. Participants were motivated by a desire to understand their own immunity status and contribute to COVID-19 scientific advancements, particularly to protect themselves, their colleagues and loved ones in LTCH/RH. Trust in the study team, researchers’ demeanor, positive experience of past participants, convenience of data collection, and home leaders’ optimism for the research were facilitators to participation. Challenges included discomfort with sample collection, concerns about data privacy and confidentiality, challenges navigating lengthy study documentation, and long wait times to receive study findings. Factors impacting participation corresponded to 9 TDF domains. Barriers related to motivation were most commonly cited, followed by barriers related to opportunity and motivation to study participation.

Conclusions

This study provides valuable insights into the experiences of LTCH/RH populations participating in immunity research during the COVID-19 pandemic. Using a theoretically-rooted approach, we recommend the use of multi-pronged strategies to enhance research engagement among this population.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12877-026-07445-3.

Background

The COVID-19 pandemic had a devastating impact on long-term care homes (LTCH) and retirement homes (RH) in Canada [1]. In 2020, the majority of COVID-19 related deaths in the country occurred within LTCH/RH populations [2–5]. Residents were at increased risk of severe illness and death due to their advanced age and comorbidities [3, 6]. This vulnerability was exacerbated by structural and contextual conditions of LTCH/RHs, which were often poorly equipped to support social distancing, cohorting and other infection prevention and control (IPAC) protocols [1–5, 7–12]. Additionally, staff working in these homes, already overburdened, faced increased risks of infection due to a combination of occupational and community transmission factors [2, 7, 12].

In response, researchers and funders quickly mobilized to investigate factors influencing COVID-19 transmission, symptomatology, and severity, particularly within LTCH/RH populations [3–5, 8, 9, 13]. However, the pandemic strained the capacity of these homes to engage in this much-needed research [1].

The Wellness Hub project was developed as an innovative study designed to address this gap. It aimed to facilitate epidemiological research on COVID-19 transmission and immunity while simultaneously providing critical supports to help LTCH and RH navigate the pandemic [12, 14]. Study procedures included collection of Dried Blood Spot (DBS) samples to determine presence of SARS-CoV-2 antibodies (natural or vaccine-induced) and to ascertain seroprevalence in LTCH/RH populations [12, 14]. Participants were provided the option of providing DBS samples on-site (with support from the study team, as needed) or via at-home self-collection (using detailed instructions and instructional video). Participants also completed a demographic questionnaire (paper-based and virtual options provided on-site; online options available via at home collection; participants had the option of connecting with a research coordinator for support completing the questionnaire, if needed). DBS samples were collected between May 17, 2021 and April 29, 2023. Results of the DBS were used to advance research on the transmission and immunity of COVID-19 and associated vaccines. The results were also fed back to participants to inform them of their immunity status, specifically whether we detected antibodies to SARS-CoV-2. In some cases, participants were also invited to provide additional serum and saliva samples.

In addition to this immunity research, the Wellness Hub research team provided supports, including but not limited to navigation, educational and financial resources, and formation of a community of practice to support homes to navigate the pandemic [14]. Wellness Hub supports spanned three key areas identified as challenges by homes and included resources to implement infection prevention and control (IPAC) implementation, vaccine uptake, and supports for staff mental health [15]. Supports were provided over a 2 year period and strategies for delivering these supports were evaluated via an implementation science study [14]. The details of the Wellness Hub studies are described elsewhere [14–16].

Through this work, we identified a significant research gap concerning efforts to conduct epidemiological research, particularly among LTCH/RH populations. Challenges to conducting research in long-term care settings have been catalogued in the scientific literature [17]. For instance, a review by Lam et al. summarized barriers into 8 themes including factors at the level of the facility, resident, staff, family, investigator as well as ethical, methodological and budgetary factors [17]. However, the majority of this literature centers on resident involvement in research studies; there are limited investigations of factors impacting research participation of non-resident populations, such as staff or family members, particularly in a Canadian setting [17]. Further, much of this research was conducted prior to the COVID-19 pandemic; pandemic-related challenges further exacerbated existing barriers, such as time constraints and staff turnover, yet the impact on research uptake has not been studied comprehensively [15, 18].

Given the intense pressures on these homes during the pandemic coupled with the need to conduct this critical research, we undertook a qualitative evaluation to assess participants’ experiences with participating in the epidemiological arm of the Wellness Hub study (i.e., collection of serosamples and completion of demographic surveys). We also explored their perceptions of the barriers and facilitators to conducting research with LTCH/RH populations more broadly to inform future rapid research conduct in health emergencies.

Methods

We report our qualitative study using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Supplementary File 1).

Study design

We adhered to the Framework Method to conduct this qualitative study [19]. Unlike traditional qualitative approaches rooted in various epistemologies, the Framework Method facilitates the utilization of both an inductive or deductive thematic analysis approach to data analysis, and is thus suitable for studies aiming to inform or assess implementation efforts [19]. Our guiding theory was the Theoretical Domains Framework (TDF), which is a meta-framework synthesizing over 30 theories of behaviour into 14 domains (Knowledge, Skills, Social/Professional Role and Identity, Beliefs about Capabilities, Optimism, Beliefs about Consequences, Reinforcement, Intentions, Goals, Memory/Attention/Decision Processes, Environmental Context and Resources, Social Influences, Emotion, and Behavioural Regulation) [20, 21]. In particular, our team modified the TDF to include intersectionality considerations and prompts, which facilitates the exploration of themes based on the lived experience of individuals, as they exist within systems of power and oppression [22]. The TDF facilitates mapping of identified barriers and facilitator domains to behaviour change interventions [16, 23, 24], which can then be used to inform an implementation program. In our study, we mapped the TDF domains to the COM-B theory, which posits that behaviour is impacted by the capability, opportunity and motivation to change [24]. The TDF can be used to determine which components (capability, opportunity, and/or motivation) may require intervention in order to support uptake of the behaviour of interest. In our study, the behaviour of interest was defined as participation in a LTCH/RH immunity research study, with additional questions related to participation experiences in the Wellness Hub COVID-19 immunity study.

Sampling

A total of 1,616 individuals participated in the Wellness Hub study (n = 800 staff; n = 91 staff household members; n = 352 caregivers; n = 373 residents). Staff were eligible to participate if they currently worked in a LTCH/RH setting and had worked in a LTCH/RH setting for at least four months since March 2020. Staff household members were defined as people who shared a kitchen and living space in the same home as an LTCH/RH staff and slept at least one night per week in the same home as the LTCH/RH staff for at least four weeks. Caregivers included essential caregivers or family members of residents living in a LTCH/RH participating in the Wellness Hub study; caregiver participants were eligible to participate in Wellness Hub regardless of resident participation in Wellness Hub study activities. Participants who identified as Indigenous were excluded from the study. This corresponded to eligibility criteria for the Wellness Hub study, which excluded Indigenous participants from participation, given that our team did not hold the appropriate relationships and expertise to conduct research with Indigenous participants, including Indigenous LTCH and RH. We employed a pragmatic convenience approach to recruit participants who had participated in the Wellness Hub study as well as those who were aware of the study, but chose not to participate.

While the Wellness Hub study included four LTCH/RH populations, COVID-19 restrictions limiting in-person visitations precluded our ability to interview LTCH/RH residents without imposing an added burden on LTCH/RH staff to facilitate data collection. For this reason, LTCH/RH residents were excluded from this qualitative study and we aimed to sample among the remaining three LTCH/RH populations (staff, staff household members, caregivers). Participants were eligible to participate if they were over the age of 18 years and comfortable understanding and speaking English. We recruited participants who took part in the Wellness Hub study via direct email and phone invitations and newsletter ads; we aimed to recruit non-participants using ads disseminated via LTCH and RH participating in the Wellness Hub study. Study participants completed a screening survey online at time of recruitment or verbally at the start of the interview to confirm eligibility.

Setting

We recruited participants within LTCH/RH eligible to participate in the Wellness Hub study [14], which included for-profit, and not-for-profit LTCH/RH in Ontario, Canada (n = 72 homes). Homes were mainly located in the Greater Toronto Area (population ~ 6.4 million) [25] and Ottawa/Champlain regions (population ~ 1.5 million) [26].

Reflexivity of interviewers

Interviews were conducted by research coordinators trained in qualitative methods (VG, MSc; TL, MPH; LDH, MSc). Two interviewers were men and one was a woman. Interviewers participated in a reflexivity exercise which included a discussion and reflection on biases and how these might impact data collection or interpretation, prior to conducting the interviews. [27] The interviewers did not hold any relationships with study participants and did not participate in the delivery, conduct, or analysis of the described Wellness Hub research studies (epidemiological or implementation research). Other researchers (CF, JMB, SES) were involved in the Wellness Hub study, however these researchers did not participate in the conduct or initial coding of the interviews.

Data collection

We developed a semi-structured interview guide (Supplementary File 2) which included 14 questions rooted in the TDF domains [20]. This approach allowed us to ensure we systematically probed on the individual and contextual factors impacting individuals’ willingness to participate in immunity research. Questions included whether or not participants enrolled in the Wellness Hub immunity study and provided a DBS, experiences in the Wellness Hub study, general challenges LTCH/RH populations face when considering whether or not to participate in immunity research, and suggestions to facilitate these populations’ participation in research, particularly in immunity research that involves the collection of biological samples. The interview guide was reviewed by research staff impartial to this study for plain language and accessibility prior to use. During the interview, we verbally collected demographic data on age, employment status (for staff only), sex and gender, race/ethnicity, and education level [28]. Participants provided verbal consent to participate in a single interview and for their interview to be audio recorded. Participants were assigned a study ID to protect anonymity. Interviews were conducted via phone and Zoom and lasted approximately 20 minutes to limit study burden. Only the interviewer and study participant were present during the interview. The interviewers did not take field notes. Participants were offered $25 compensation for their participation in the interview.

Data analysis

Recordings were transcribed; any identifiable information was removed from the transcripts. Transcripts were marked using only the participant study ID and stored securely on REB-approved servers. Participants did not member check transcripts or themes. Qualitative findings were analyzed using NVivo software version 14 [29]. Two researchers (VG, TO) reviewed all study transcripts to develop an initial codebook. We used an iterative coding process that combined both open coding and theoretical approaches, in keeping with the Framework Method [19, 30, 31]. Initially, open coding was applied to the first 20% of the transcripts (5 transcripts), which were double-coded by two researchers (VG, TO) to identify emergent themes. Coding comparisons were conducted after each transcript, and any conflicts were resolved through team discussions, with a third reviewer involved if necessary. Comparisons were conducted for the entirety of each manuscript, using Nvivo software. The coding framework was further refined as necessary. Once a Cohen’s Kappa statistic of 0.60 or higher was achieved, indicating satisfactory inter-coder agreement, the finalized codebook was used to code the remaining transcripts by a single researcher (TO). Parent and child nodes were synthesized into salient themes using a framework matrix developed on Excel software, following the templates provided by Gale et al. [19] To help situate our findings within the broader literature, one researcher (CF) categorized identified themes into Lam’s 8 categories of challenges to conducting research in LTCH [17]. To further incorporate a theoretical and implementation science lens, researchers (VG, TO, CF) also categorized themes using the TDF [20] to identify the domains that impact participation in immunity research. TDF domains were subsequently categorized to the COM-B framework to identify whether participation was impacted by factors related to capabilities, opportunities or motivation; this process was conducted using the SELECT tool which builds on the work of Michie et al. [20, 24, 32].

Findings are presented inductively and deductively – first, according to emergent themes using participant quotations as rich descriptions of the study data, then, mapped to the TDF and COM-B, to facilitate future implementation strategy selection to enhance research participation. Quotes from staff and staff household participants are delineated with an S; quotes from caregivers and family members are delineated with a C, alongside study ID. Descriptive statistics using Excel software were used to summarize participant demographics; data cells with fewer than n = 5 responses were aggregated or not reported to protect participant anonymity.

Results

Interviews were conducted between May 1, 2023 and August 2, 2023. The mean interview time was 19.2 min (range 9.36–36.04). Meaning saturation, defined as the point where the main themes were identified and new interviews did not result in additional insights or themes, was achieved in our dataset [33]. Kappa was 0.8739 indicating a strong level of agreement.

We recruited a total of 24 participants for this qualitative study; no participants dropped out of the study. Participants included 12 LTCH/RH staff and staff household members and 12 caregivers/resident family members from 19 LTCH/RH. All study participants took part in the Wellness Hub study and provided a DBS sample. In addition to Wellness Hub, six participants reported participating in previous research studies. Of these, five had participated in studies that involved blood sample collection, while one had participated in a study that included nasal swabs. Participants reported learning about the Wellness Hub study via emails, flyers, seeing the study staff at LTCH or RH, or through LTCH or RH staff. One participant heard about the study from a family member.

The average age of participants was 52.8 years; 20 participants (83%) were women. Sixteen participants (76%) identified as White or Caucasian, eight participants (33%) identified as a member of a racial or ethnic minority group in Canada. Sixteen participants (67%) held a graduate or university degree and eight participants (33%) held a college degree or completed some university.

Challenges with wellness hub study participation

We identified challenges to research participation at the facility level and caregiver/family level, as well as challenges pertaining to study methods, ethics and consent.

With respect to the facility level, participants noted the importance of an environment that is conducive to research. Participants who provided samples and completed questionnaires in the LTCH or RH felt that the physical environment was not appropriate, particularly in busy or noisy spaces (such as hallways), which is where the study teams were stationed. Participants felt this environment was distracting and compromised confidentiality. Conversely, some participants who chose to complete the DBS and questionnaire at home described feeling nervous about completing the sample themselves, as opposed to having a researcher collect it, as described in the following quotes,

“And then there’s a bit of hesitation when you’re at home and you do it yourself” – C08.

“I wouldn’t do it [provide a sample] if I had to do it myself…somebody has to come here and say, here, take it [the sample]” – S01.

Caregivers also noted challenges related to the timing of when the research was conducted. They highlighted that most of their visits to homes were on the weekends, whereas the study teams were typically on site during the week, which may have precluded participation as noted in the below quotes,

“Cause we tend to go on weekends to visit my dad, so it would have been a little more convenient if it, it was like, on a weekend or something” – C04.

“I think the time to participate, if they are working, and I’m not sure what the hours were of the collection, but middle of the day, or during the day, its harder for people to, I guess, take time off work to participate” –C03.

Multiple challenges were noted related to study ethics and methods. First, participants expressed concerns about the difficulty and pain associated with DBS sample collection, as demonstrated in the following quotes,

“they poke[d] me three times, so the blood can come out. So that was the only difficult thing. And I was looking at other people, my colleagues as well. They were having difficulty providing the blood sample and they have to redo it.” – S01.

“it kind of hurt me and hurt more than I thought it would. And in fact, I actually had a bruise on my fingers from it [the DBS collection]” – S4.

Participants were also disappointed about the length of time it took for them to receive their antibody results, suggesting a lack of clarity related to the study consent forms and expectations, as noted in the following quotes,

“Getting the results in a timely fashion [is important] because you kind of forget, you know yeah, that’s right, they haven’t got back to us and then it sort of makes you think – is there going to be a result” – S08.

“I don’t know if that was our end or the wording, that it seemed to us that even on that day we were going to get some sort of result. Maybe not everything but we were expecting something and then we thought, okay maybe shortly after, but it’s been a while, so I think more timelines, just letting us know timelines” – S08.

In addition to perceived lack of clarity around when the DBS results would be received, participants felt the lengthy consent form was a challenge to study participation. Participants stated that despite its thoroughness, the form posed a barrier to understanding the research processes or outcomes. As seen in the following quote, participants felt that most people would not read the form comprehensively and may therefore have misunderstandings about the study research or outcomes (such as DBS result turnaround time), which can result in negative feelings or resentment,

“I know that we have very thorough consent forms, very thorough information, but I don’t think everybody truly reads through every line so I sometimes, maybe people will be surprised at what is coming from the research or what the outcomes are of the research and maybe it’s not what they perceived or what they thought was going to be the outcome, and I could imagine that sometimes in those cases then they will feel a little resentful that they were a part of that” -S006.

One strategy that was employed by the Wellness Hub team in an effort to address the lengthy consent form and completion of the demographic questionnaire was use of QR codes and ipads to facilitate online completion of the forms. However, two participants perceived technological challenges related to these online forms and suggested that only participants who were “computer savvy” would find these strategies beneficial.

Facilitators to wellness hub participation

At the individual level, participants noted a number of factors that influenced their motivation to participate in research. Facilitators to participation were also largely attributed to the characteristics of the research team and noted at the facility and leadership level. With respect to study methods, factors identified by some participants as barriers (e.g., use of technology to complete forms) were seen by others as facilitators.

Participants’ motivation to participate in the Wellness Hub immunity study stemmed from a desire to contribute to scientific advancements and community impact, as demonstrated in the following quotes,

“It’s the feeling that you’re part of something bigger than yourself and that you’re part of something that will hopefully make a change somewhere down the line or advance knowledge somewhere” – S06.

“The more we can find out about this issue, you know, the better it is going to be for down the road, and I think it [COVID-19] has destroyed many lives and so I fully support, you know, the more that we can understand how this disease is spread and how it affects individuals differently – it would be good for the bigger population” – C11.

In particular, participants had a desire to do something to contribute to the COVID-19 pandemic response, given its deep impact on LTCH/RH populations. Staff wanted to improve scientific knowledge and understanding of how their home could better navigate the pandemic, while caregivers believed this research would support LTCH and RH to respond to COVID-19 and future outbreaks, as demonstrated in the following quotes,

“We were hit the most by the COVID pandemic. And obviously you want to do whatever you can to make things improve in order to manage with the pandemic.” – S06.

“So the timing of the study when it comes out…I go, oh okay, COVID just started, you know, my mom is in the long term care and this is contributing to the study” – S19.

Some participants said that the positive experiences of those who participated in the study previously was also a motivating factor.

Many staff participants also noted an interest to learn about the results of the antibody tests for themselves and their loved ones, as seen in the following quote.

“I was willing to participate actually and find out the effects of COVID-19 on both my mother and myself and anyone else who has been affected” – C04.

Participants frequently noted that factors at the investigator level, including trust in the study team, the team’s ability to facilitate a relationship with the home, and the attitudes of the study staff were very important to participation. Participants felt that the Wellness Hub team made a good connection and fostered trust with the home and staff to facilitate research. They also noted the importance of recognizing the research team as legitimate – for example, participants noted that they trusted the study team more when they learned they were from St. Michael’s Hospital, which they perceived as a trusted academic hospital serving the Toronto downtown core. Participant quotes illustrating these themes are provided below,

Otherwise, I may not participate because of the trust. So you’ve made a very good connection with our workplace and created a good workspace with the trust for us to participate in this research” – S11.

“And the team was very positive. So the attitude is really important” – S06.

“I’d like to see that it is through a reputable source. Like when I saw it was with St. Michael’s Hospital [the coordinating site for the Wellness Hub study], I thought, yeah, this is real, you know?” – C07.

The optimism of opinion leaders within the home also played a role in participation, as highlighted by the following participants,

“In our home, people are positive toward research” – S06.

“The director of nursing there, she would have been excited to be part of this…what I’m saying is, is that if she was not excited about it [the research study], it wouldn’t have happened.” – C09.

At the facility level, participants noted the importance of convenient study participation. Some participants, particularly staff, appreciated the flexibility of coming down to the lobby when they wanted to participate in the study and noted that the physical presence of the study team prompted them to participate.

“We had the freedom to come down [to the lobby] when we wanted. We didn’t have to wait very long. You know, it was really quite efficiently run and people were very friendly and helpful and any questions you had were answered as well as they could” – C12.

“If I wasn’t there at the time when there was a booth and I walked by and asked about it, I don’t think I would participate” – C11.

Finally, participants had mixed perspectives on the use of at-home data collection and only one participant noted that the option to collect the DBS sample in their own home facilitated their participation.

Perceived barriers and facilitators to LTCH/RH populations’ participation in immunity research

Participants highlighted several barriers that they perceived to impact LTCH/RH populations’ participation in immunity research more generally. At the individual level, these included insufficient understanding of the study purpose and details. Participants noted that this challenge would be further compounded for participants who experienced language barriers. As described for the Wellness Hub study, participants said that lengthy study materials (e.g., letter of information, consent forms) hinder participation and understanding,

“for anybody as a layperson to truly understand like the purpose of the study and so on, you explain, you explain, you explain. But I see often time for a layperson, you’ll be, you’d be lucky to get, you know, understand like 50% of what you’re trying to do” – S19.

Participants also cited concerns about privacy and confidentiality, and unease about how study data will ultimately be used, as seen in the following quote,

“when I speak with not just colleagues but with friends and confidentiality, they’re always fearful that it’s [the data] going to be used against them, even if they don’t provide a name and date of birth, that somehow government or insurance companies are going to access this information and there’s going to be some punitive consequence” – C06.

There were also a number of contextual factors impacting participation, as outlined in the below quotes. For all participants, this included time constraints. Staff participants shared concerns that they may be coerced or pressured to participate if the study took place in their work environment,

“I suppose someone could feel like, because they’re in a sort of captive environment, they may feel pressure to participate in the study” – S06.

“I think the time to participate if they [participants] are working and I’m not sure what the hours were of the collection, but middle of the day, or during the day, it’s harder for people to I guess take time off work to participate” – C03.

Participants believed that facilitators to future research participation could include a desire to understand your own body, risk factors, and personal immunity and to help society, including supporting research for an aging population, advancing understanding of communicable diseases, and advancing scientific contributions.

Participants recommended a number of strategies to facilitate research participation including: having study personnel facilitate data collection on-site; having clear, accessible study information available in multiple formats (in particular, video formats and handouts with simplified project information), and ensuring participants have the time available to participate. One participant emphasized the importance of receiving a final study report and one participant highlighted the importance of study compensation.

Mapping of themes to the theoretical domains framework

We mapped 12 barrier themes to 7 TDF domains and 15 facilitator themes to 6 TDF domains. Table 1 provides a summary of this mapping. The converse of barrier domains were often perceived as facilitators. For instance, factors in the knowledge domain, such as insufficient understanding of study details, complexity of study documents, and challenges in findings interpretation were seen as barriers, while the inverse of these (e.g., accessible study materials in clear language) were perceived as facilitators. Similar trends, where the inverse of the barriers were identified as facilitators, were noted for the environmental context and resource domain (e.g., time constraints a barrier to participation; flexibility and accessibility of participation a facilitator to participation), beliefs about consequences, and social influences. Unique barriers and facilitators within these domains are also outlined in Table 1. Concerns about sample collection pain, ability to self-collect a sample, and lack of technological proficiency to participate in online data collection forms were identified as barrier themes in the domains of optimism, beliefs about capabilities, and skills, respectively. Responsibility to scientific progress and community impact and study compensation were identified as facilitator themes in the domains of social or professional role and reinforcements, respectively.

Table 1.

Barriers and Facilitators to Immunity Research among LTCH/RH populations

Behavioural Domain (Capability, Opportunity or Motivation)	Theoretical Domain	Barriers to immunity research participation	Facilitators to immunity research participation
Capability	Knowledge	• Insufficient understanding of study details (compounded by language barriers) • Complexity of study documents • Challenges in interpreting study findings	• Clear understanding of study details • Simple, accessible study materials • Desire to understand COVID-19, antibody status and impact of vaccine • Interest in receiving personal antibody results
	Skills	• Lack of technological proficiency to facilitate administrative study components
Opportunity	Environmental context and resources	• Time constraints • Accessibility of collection site • Suitability of physical space (noise/ privacy)	• Flexibility and convenience of participation • Accessibility of collection site including on-site research team presence • Utilization of digital tools to facilitate participation (Ipad, videos)
	Social influences	• Lack of trust in study team or organization	• Opinion leaders or a LTCH/RH culture that encourages research participation • Trust in study team or organization • Professional and friendly research team with positive attitudes • Perceived benefits to society at large
Motivation	Beliefs about consequences	• Hesitancy towards experiments • Concerns about data privacy and confidentiality	• Perception that antibody / immunity results would be available immediately or shortly after sample provided OR understanding of study timelines • Scientific progress and community impact
	Beliefs about capabilities	• Concerns or challenges in self-collection of sample
	Optimism	• Pain, physical discomfort with sample collection
	Social or Professional Role		• Responsibility to scientific progress and community impact
	Reinforcements		• Study compensation

Barrier and facilitator domains most commonly related to individuals’ motivation to participate in research (beliefs about consequences, beliefs about capabilities, social or professional role, reinforcements, optimism). Two domains related to capability of participating in research (knowledge, skills) and two related to opportunities to participate in research (social influences, environmental context and resources). Strategies suggested by participants more commonly related to capability challenges (e.g., improving knowledge) and opportunity challenges (e.g., improving convenience of participation), though one participant cited use of incentives as a strategy to impact motivation.

Discussion

We explored the experiences of LTCH/RH staff, staff household members, and resident caregivers on immunity research study participation during the COVID-19 pandemic. We found that participants were motivated to participate in research by a desire to understand their own COVID-19 immunity status and to contribute to scientific advancement. This motivation was heightened by the pandemic’s scale and impact on LTCH/RH, as participants sought to contribute to knowledge that could protect themselves, their colleagues and loved ones. Additional facilitators to participation included social influences, particularly the presence of a supportive LTCH/RH culture towards research and the role of research champions within the home who encourage participation. Participants also highlighted several challenges to Wellness Hub participation, including discomfort with sample collection, concerns about data privacy and confidentiality, and challenges navigating lengthy consent forms and information letters. Frustrations were compounded by long wait times for study results, which were exacerbated by lab backlogs and staff shortages due to the pandemic.

Participants commented on perceived barriers and facilitators to LTCH/RH research participation more generally. While these perceptions aligned well with those described in the literature, most were not cited as actual barriers in the Wellness Hub study [17, 34–36]. For instance, participants cited lack of time as a barrier to research participation, yet for Wellness Hub, accessibility and convenience to study participation were more commonly cited as barriers, as compared to time constraints. Similarly, participants theorized that concerns about coercion and hesitancy towards experiments may be barriers to research, yet these were not cited as barriers to Wellness Hub participation. This gap likely represents an important sampling limitation in our study, given that all participants took part in Wellness Hub. It is possible that those who did not participate held these concerns, which prohibited their enrollment.

One strength of our study is use of a theoretical lens to inform data collection and analysis. Using the TDF and COM-B model, we identified the greatest number of barriers related to individuals' motivation to participate in immunity research, trailed by barriers related to capacity or opportunity to participate. Interestingly, when asked to suggest strategies to facilitate participation, participants commonly cited strategies that would impact the capability or opportunity domains, such as improved accessibility of sample and data collection or improved knowledge and communication about the study. Only one strategy related to motivation was suggested by participants, which was the use of incentives or financial compensation.

Our findings suggest a need to design strategies that improve motivation, while ensuring that participants have the capacity and opportunity to participate in research. One overarching opportunity, as highlighted in the literature, is to co-design study procedures with LTCH and RH populations [17, 34, 37]. This co-design process should recognize the need for flexibility, given the large diversity in LTCH/RH roles and participant preferences, as uncovered in our study. For example, many participants appreciated the ability to conveniently complete data forms via ipads and through mobile devices, however a minority saw this as a deterrent to participants who were less technologically savvy. It is also important to consider the perspectives of underrepresented and minority communities, who are overrepresented in the LTCH/RH sector, yet were underrepresented in our sample [38, 39]. These participants may experience barriers not cited in this study, including concerns related to historical mistreatment and discrimination in research [34, 36, 40]. Despite the recognition of the importance of engaging these populations in co-development and in research, there remains limited guidance on how to do so effectively or efficiently amid a public health crisis [41].

More specifically, strategies to improve motivation may include increased emphasis on how the research results will benefit individuals personally and how they may benefit society at large. These descriptions are typically embedded into study consent forms and letters of information, yet our participants highlighted that these lengthy forms are not conducive to information sharing and may not be reviewed comprehensively by study participants. Strategies to improve leadership buy-in and organizational culture for research participation may also improve individuals’ motivation. Characteristics of the investigative team were the second most commonly cited facilitator, suggesting that strategies to train the team to be approachable and to build trust and meaningful relationships are critical to motivating participation. Finally, the Wellness Hub investigators chose dried blood samples over other, more invasive procedures (e.g., venopuncture) to reduce pain and inconvenience, yet some participants still expressed concerns about the pain associated with sample collection. Being clear about expectations and sharing options for symptom relief may address this barrier and prevent negative experiences of those who do participate in immunity research.

With respect to capability, there is an opportunity to reform our processes of sharing study information and obtaining informed consent. Our study shows that lengthy forms, while comprehensive and developed with the intent of improving transparency and increasing trust, have the opposite effect and may result in confusion and misaligned expectations. Innovative ways to share study information, including the use of video descriptions, were suggested by study participants, however, evidence suggests that these strategies may have limited impact [42]. One-to-one discussions and checking expectations and understanding may be more viable options, though more research is required to determine how to train staff to facilitate these discussions, whether these strategies impact study staffing resources, and whether they improve the number and diversity of participants recruited [35, 42–44].

Finally, participants said that convenience was key to study participation. For staff, this included having study teams present and visible on site, though many stated the importance of collecting data in more private areas to reduce privacy concerns. Caregivers stated the importance of recognizing visitation patterns to homes, which may require study staff to collect samples on weekends and after-hours.

Our study has a number of strengths. First, we conducted this study during the COVID-19 pandemic and thus provide insights from one of the populations hardest hit by the pandemic, and for whom immunity research was critical. These findings can be used to inform future immunity research during public health emergencies impacting LTCH and RH populations as well as other congregate care settings such as shelters and group homes. Secondly, our study is rooted in a theoretical approach which allowed us to systematically categorize factors impacting participation and suggest corresponding strategies to mitigate barriers and leverage facilitators. Finally, our study includes populations often overlooked in LTCH/RH studies, yet whom face significant infection and transmission risks [12].

This study has several limitations. First, while we aimed to recruit an equal sample of LTCH/RH staff, staff household members, and residents’ caregivers, participation from staff’s household members was limited both in the Wellness Hub immunity study and this qualitative evaluation. Given our relatively high recruitment rates for the Wellness Hub study, the low response rate for this qualitative study was surprising. It may however, further reiterate the importance of investigator factors to improving motivation for study participation. Research staff leading this qualitative study were arms-length from the immunity study, and thus did not build the same levels of trust or rapport with participants, as Wellness Hub staff did. Further, this research was conducted virtually, via Zoom and telephone calls, which may have further limited participation.

Given the role of community networks in infectious disease transmission [2, 45, 46], further efforts are needed to engage these populations, particularly when conducting epidemiological studies. Second, due to COVID-19 related IPAC restrictions, our qualitative evaluation did not include LTCH/RH residents, limiting the perspectives captured. Third, despite our significant efforts to recruit participants who did not participate in the Wellness Hub study, we were unable to engage any non-participants, leading to a sampling bias. Nevertheless, we asked participants to reflect on both their study experiences and perceptions of LTCH/RH research more broadly, providing valuable insights that align with existing literature [17, 37]. Lastly, this study was limited to English-speaking participants; this is an important equity limitation, as non-English speakers have historically been underrepresented in research and may face additional barriers to research participation. Our findings should be interpreted in light of these limitations and in the context of existing literature on equity gaps in research generally, and as specific to the LTCH/RH context [34, 36, 40].

Conclusion and implications

Our study offers valuable insights into the experiences of LTCH/RH populations who participated in immunity research during the COVID-19 pandemic, as well as broader factors influencing research in these settings. Factors positively impacting participation included personal interest in antibody status, altruism, trust in the study team, and convenience of participation. Challenges included discomfort with sample collection, privacy concerns, lengthy consent and study information forms, and delays in receiving study results. These findings highlight the importance of co-designing research with LTCH/RH populations, simplifying consent procedures, and fostering a culture that supports research participation. Additionally, effectively communicating the impact of research in collaboration with LTCH/RH leaders and champions might enhance motivation to participate in research. Future studies should build on these insights to develop tailored strategies that promote inclusive immunity and epidemiological research in LTCH/RH settings.

Abbreviations

LTCH

Long-Term Care Homes

RH

Retirement Homes

TDF

Theoretical Domains Framework

COM-B

Capabilities-Opportunity-Motivation and Behaviour model

IPAC

Infection Prevention and Control

COREQ

Consolidated criteria for reporting qualitative research checklist

DBS

Dried Blood Spot

Authors’ contributions

CF and SES study concept and design; VG, LDH, TL, JMB acquisition of data; CF, VG, TO, LDH, TL, JMB, and SES analysis and interpretation of data; CF, VG, and TO drafting of manuscript and revised it. All authors read, revised and approved the final version of the manuscript.

Funding

This work was supported by the COVID-19 Immunity Task Force (Grant 2021-HQ-000143).

Data availability

The datasets generated and/or analyzed during the current study are not publicly available due to research ethics requirements ensuring participant anonymity and compliance with research ethics board regulations. However, the de-identified datasets are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

This study was approved by the Unity Health Toronto Research Ethics Board (REB #23 − 003). We obtained verbal informed consent from all participants.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.