Introduction
South Asians living in Canada have the highest prevalence rate of Type II Diabetes Mellitus (T2DM) among all racial and ethnic groups (Banerjee & Shah, Reference Banerjee and Shah2018). Yet, they significantly underutilize diabetes health services (Public Health Agency of Canada [PHAC], 2022). South Asians are less engaged with health service providers (HSPs), diabetes prevention screening, and diabetes management programs (PHAC, 2022; Sharif & Kassim, Reference Sharif and Kassim2012). This underutilization of T2DM services has severe consequences, leading to a higher incidence of T2DM-related complications such as kidney failure, vision loss, cardiovascular disease, and limb amputations (Ni et al., Reference Ni, Liu, Li, Li and Dong2020; World Health Organization [WHO], 2016). South Asian immigrants face a higher risk of these complications (15.7% vs. 9.4% for macrovascular disease and 27.3% vs. 16.5% for microvascular disease) compared to non-immigrants in Canada (Chowdhury & Lasker, Reference Chowdhury and Lasker2002; PHAC, 2021, 2022). The prevalence of T2DM is a particular concern in Ontario, with a 42 per cent increase since 2009, likely due to factors such as an aging population and the sharply growing South Asian community (D’Silva et al., Reference D’Silva, Hafleen, Mansfield, Martel, Fierheller, Banerjee, Malhotra, Mutta, Dhillon, Hasan, Parikh, Nooraie, Chaze and Zenlea2022; Public Health Agency of Canada, 2022).
Tamils (a South Asian sub-group from Sri Lanka) exhibit the highest prevalence of T2DM and represent a unique group deserving of detailed research attention. In Sri Lanka, Tamils have a T2DM prevalence rate of 14.7 per cent, compared to 12.4 per cent in the Singhalese population, with the diagnosed prevalence peaking at 60–69 years (Rannan-Eliya et al., Reference Rannan-Eliya, Wijemunige, Perera, Kapuge, Gunawardana, Sigera, Jayatissa, Herath, Gamage, Weerawardena, Sivagnanam, Dalpatadu, Samarage, Samarakoon, Samaranayake, Pullenayegam and Perera2023). This trend continues among the Tamil diasporas. In Ontario, Canada, a study found that immigrants from Sri Lanka had the highest prevalence (26.8%) among South Asians, surpassing Bangladeshis (22.2%), Pakistanis (19.6%), Indians (18.3%), and Nepalis (16.5%) (Banerjee & Shah, Reference Banerjee and Shah2018). These numbers are even more shocking when compared with the non-immigrant population in Canada, who had a T2DM prevalence rate of 11.6 per cent (Banerjee & Shah, Reference Banerjee and Shah2018).
While the peak ages of diagnosed T2DM vary among South Asian sub-groups, there is a trend of increasing prevalence with age (Shivashri et al., Reference Shivashri, Hannah, Deepa, Ghebremichael-Weldeselassie, Anjana, Uma, Mohan and Saravanan2022). This trend makes it crucial for research to focus on older adults, who are particularly vulnerable to the complications associated with T2DM. Despite the growing body of evidence on the barriers that South Asian immigrants face in accessing health care services in countries like the United States of America, Australia, the United Kingdom, and Canada, a notable research gap remains when it comes to hearing the voices of the Tamil community from Sri Lanka. This community has not only endured the trauma of a civil war in the past two decades, but they also face additional challenges related to immigration history, socioeconomic status, education level, cultural beliefs, family dynamics, and acculturation, which may impact their health care experiences (Waqar & Kuuire, Reference Waqar and Kuuire2024). Given Tamil older adults’ unique experiences and potential vulnerabilities in the Canadian health care system, exploring and understanding their perspectives is crucial. Therefore, this study aims to explore the experiences of older Tamil adults with T2DM accessing T2DM-related health services in Greater Toronto, Canada.
Conceptual framework
Health care access, as defined by Levesque et al. (Reference Levesque, Harris and Russell2013), encompasses ‘the opportunity to identify health care needs, to seek health care services, to reach, to obtain or use health care services and to actually have a need for services fulfilled’ (p. 8). Levesque et al.’s (Reference Levesque, Harris and Russell2013) framework is appropriate as it provides a comprehensive understanding of health care access by addressing both service provision (supply-side) and user abilities (demand-side) dimensions. The framework’s five dimensions – the ability to perceive, seek, reach, pay, and engage with health care services – align with this study’s focus on the barriers and facilitators faced by Tamil older adults in Toronto. These dimensions, combined with the service provision factors such as approachability, acceptability, availability and accommodation, affordability, and appropriateness, guide the structured exploration of health care access in this specific cultural context (Levesque et al., Reference Levesque, Harris and Russell2013).
Methods
Study design
A qualitative study employing Thorne’s (Reference Thorne2016) interpretive description was conducted to explore the experiences of Tamil older adults in accessing T2DM-related health care. Interpretive description was selected for its suitability in generating practical insights into health care access, particularly in identifying the unique experience of the Tamil diaspora population in accessing diabetes-related health care services (Thorne, Reference Thorne2016). Interpretive description is a qualitative approach that aims to generate findings that are both theoretically informed and practically useful in clinical and policy contexts. It involves iterative data collection and analysis to construct meaningful patterns that inform health care practice (Thorne, Reference Thorne2016). The Tamil diaspora from Sri Lanka identifies as Tamil (not Sri Lankan-Tamil or Sri Lankan). Tamil is a language and an identity. Thus, this study will refer to this population as Tamil(s).
The study utilized a semi-structured interview guide consisting of open-ended questions stemming from Levesque et al.’s (Reference Levesque, Harris and Russell2013) access to health care framework (see Table 1). To enhance the interview guide, a pilot test was conducted with two eligible Tamil older adults to gather feedback for improvement. Based on the insights from the pilot interviews, minor revisions were made to the sentence structure of some questions to enhance clarity.
Table 1. Key questions from interview guide
Participant recruitment and sample
Purposeful and snowball sampling were employed to recruit participants for this study. Initially, a study poster was shared on social media and at a community centre, inviting Tamil older adults with T2DM residing in the Greater Toronto Area to participate. Invitations targeted individuals aged 60 years or older who are identified as Tamil immigrants born in Sri Lanka, asking them to participate in 40–90-minute one-on-one in-depth interviews. The first author (TK) was invited to present details about this study in Tamil after a yoga class for older adults. Following the presentation, several potential participants reached out to the first author to express their interest in participating. After four interviews, we purposefully looked for participants with various living arrangements (e.g., living with a spouse, living with a child’s family, or unhoused). After participating in the interviews, some participants referred their peers who met the eligibility criteria to join the study (snowball sampling). There was no predetermined sample size for this interpretive descriptive qualitative research. We used the concept of information power to guide our decision on sample size. Information power suggests that the more rich and relevant the data are in relation to the study aim, the fewer participants are needed (Malterud et al., Reference Malterud, Siersma and Guassora2016).
Data collection
Demographic data were obtained through a pre-interview questionnaire, covering details such as age, gender, diabetes health status, income, education, and year of arrival in Canada. Participants were provided with the option to complete a hard copy of the questionnaire or provide verbal responses directly to the researcher.
The in-depth one-on-one interviews were facilitated by the first author (TK), who is proficient in both Tamil and English and identifies as Tamil. Each interview focused on participants’ diabetes-related knowledge, efforts to access diabetes-related care, and interactions with their health care providers. Participants were welcome to bring a support individual to the interview. The interviews were conducted from April to June 2023 in the participants’ preferred language, English or Tamil. The interviews were conducted in the participants’ preferred location and method, via phone, virtually on Zoom (version 6.0.11), or at a wellness centre familiar to the participants. Probes were employed to delve into the nuances of participants’ experiences accessing health care services. The interviewer took field notes before, during, and after each interview. Field notes captured contextual details such as the interview setting, participant demeanor, non-verbal cues, and immediate reflections during and after the interaction. Participants received $25 cash in person or through electronic transfer as a token of appreciation.
Ethical considerations
This study received approval from Queen’s University’s Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (TRAQ #: 6038033). The consent form and information letter for participants were developed in English and then professionally translated from English to Tamil. Participants were provided information related to the study’s purpose and their involvement in the study. Verbal or written informed consent was acquired from each participant before commencing the interview. Permission was also obtained for the audio recording of the interviews, and participants consented to be contacted at a later time for member-checking purposes.
Data analysis
Interviews were audio recorded, translated, and transcribed by the first author (TK). A third-party reverse translation was conducted on the first transcribed interview to ensure accuracy. Once the reverse translation confirmed the transcription’s accuracy, the first author (TK) translated and transcribed the remaining interviews as they were conducted and subsequently imported them into NVivo 12 (Lumivero, 2023), a qualitative data analysis software program. NVivo 12 (Lumivero, 2023) software was used for data management and coding.
The data analysis for this study employed interpretive description, as Thorne (Reference Thorne2016) outlined. The analytical process was guided by iterative engagement with the data, focusing on understanding participants’ lived experiences and identifying patterns that could inform practice. There were six main steps in this analytical process:
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Step 1: Data familiarization: This initial phase involved immersing in data through repeated reading of the transcripts. The goal was to grasp the overall context of the participants’ experiences.
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Step 2: Generating initial codes: During this phase, we (TK & BA) engaged in detailed and comprehensive notetaking, focusing on three areas: descriptive comments (the content of what was said), linguistic comments (focused on the use of language), and conceptual comments (began to interpret the underlying meanings and themes within the participants’ narratives).
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Step 3: Pattern and theme identification: Following the detailed noting, major themes were identified. This step involved transforming the initial notes into concise statements that capture the essential aspects of the participants’ experiences. Each theme was carefully examined to capture a distinct and significant aspect of the participants’ experiences.
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Step 4: Refining and synthesizing themes: The authors discussed, reviewed, and finalized the themes to ensure they captured the data appropriately.
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Step 5: Defining and naming the themes: The authors met to define and name the themes collaboratively.
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Step 6: Organizing the data: Finally, the themes were organized according to Levesque et al.’s (Reference Levesque, Harris and Russell2013) health care access framework.
Strategies for rigor and trustworthiness
Several strategies were employed to ensure the rigor and trustworthiness of the analysis. Triangulation was achieved firstly by using two data analysts, enhancing the credibility of the findings. A research team member (BA) independently underwent the same analytical process as the first author. This collaborative approach ensured that the findings were robust and not only influenced by the first authors’ perspectives (McKim, Reference McKim2023). TK and BA conducted frequent debriefing sessions to review each analysis step thoroughly. Independent analysis of data by two research team members provided another layer of validation, enhancing the credibility and trustworthiness of the findings. Secondly, reflexivity was maintained using a reflective journal, documenting the analytical process and the researcher’s evolving understanding. Thirdly, member checking (a process where data are presented to some participants for feedback) was conducted by sharing preliminary themes with four participants to verify their accuracy and alignment with participants’ experiences (Varpio et al., Reference Varpio, Ajjawi, Monrouxe, O’Brien and Rees2017). We chose to present summaries of the themes to a sub-set of participants to reduce participant time to review, lessen any potential stress related to revisiting their experiences, and enhance the value of the information gained (Candela, Reference Candela2019; McKim, Reference McKim2023). High-level summaries of themes and supporting quotes were shared with participants. Then, we asked the participants open-ended questions to elicit feedback on the themes and subsequently added additional information (such as new examples for themes) obtained during member checks to the data.
Reflexivity
Reflexivity enables researchers to thoughtfully consider how their personal experiences, backgrounds, and views might influence how they conduct research and interpret the data (Tindall, Reference Tindall, Smith, Flower and Larkin2009). I (TK), the first author, am a second-generation Tamil–Canadian. Growing up in the Greater Toronto Area, where the largest Tamil diaspora resides (Mason et al., Reference Mason, Hyman, Berman, Guruge, Kanagaratnam and Manuel2008), has provided me with several insights on the Tamil community. Because of my personal ties to this community, I am aware of the cultural and social contexts that may influence older Tamil adults’ experiences in accessing T2DM-related health care. For example, there is a common belief within the community that T2DM is an inevitable aspect of aging, which may influence how the study participants approach their health care. However, I also recognize the limitations of my perspective. As someone who has not directly experienced the traumatic events of the Sri Lankan civil conflict, I cannot fully understand how their pre-migration experiences influence their current health care behaviours. To address this, I made a conscious effort to ensure that my interpretations were grounded in the data collected and the first-hand narratives provided by the participants. My aim was to accurately represent their lived experiences, without letting my presumptions interfere too much with their stories.
Results
Nine in-depth phone (n = 1), virtual (n = 3), and in-person (n = 5) interviews were conducted with representation from two regions (Scarborough & York) in the Greater Toronto Area, Ontario. The interviews ranged from 28 minutes to 92 minutes, with a median of 51.26 minutes among the nine interviews. Participants included four females and five males who had lived in Canada for 11 to 46 years, were between the ages of 60 and 83, and had diverse living arrangements (i.e., living with a spouse, living with their child’s family, or unhoused). Participants included four females and five males who have lived in Canada for 11 to 46 years, were between the ages of 60 and 83, and had diverse living arrangements (i.e., living with a spouse, living with their child’s family, or unhoused). Most participants (n = 8) had a self-reported annual income of under 19,999, and one participant was employed at the time of the interview with a self-reported income range of 35,000–$49,999. All participants preferred to be interviewed in Tamil and attend the interview on their own (no support person). See Table 2 for participants’ demographic information.
Table 2. Participants demographic information (n = 9)
The data analysis revealed that many participants answered with a specific focus on managing T2DM. The discussions frequently highlighted that diet and exercise were primary aspects of diabetes management for participants. Initially, the concept of compromised access to care did not appear to be a straightforward concern; however, further probing revealed a deeper, nuanced understanding of the barriers that facilitators experienced in accessing health care services. Therefore, themes presented here are viewed through the lens of T2DM management.
Five themes corresponding to the five abilities under Levesque et al.’s (Reference Levesque, Harris and Russell2013) access to health care framework were identified: timely and informed diabetes management, reliance on trusted health service providers, reliance on others for transportation, financial factors, and navigating health care through cultural and communication factors (see Table 3 for direct quotes from participants organized into the relevant themes and sub-themes). These themes were related to the ability to perceive, seek, reach, pay, and engage with the Canadian health care system (Figure 1).
Table 3. Participant direct quotes organized by themes and sub-themes
Figure 1. Themes from findings.
Theme 1 – Ability to perceive: Timely and informed diabetes management
The ability to perceive refers to an individual’s capacity to recognize their health care needs and to be aware of available health care services (Levesque et al., Reference Levesque, Harris and Russell2013). The study results showed that this ability was hindered by factors such as health literacy and knowledge and beliefs about T2DM as represented as the following sub-themes: (1) limited awareness of diabetes-related information and health services, (2) stress impacting T2DM health care perception, and (3) hesitation to take insulin and concerns about overtreatment.
Limited awareness of diabetes-related information and health services
Most participants (n = 7) reported discovering diabetes health services by chance rather than through direct referrals from health service providers (HSPs). One participant shared, ‘I met [my social worker] at the pathway program as someone told me to go there… this was at a yoga class that I went to’ (Participant #9), which led her to diabetes education programs and additional diabetes-related HSPs. Another participant recounted, ‘While working as a security guard, I stumbled upon a diabetes education program that I did not know existed. It was purely by chance, not something my doctor told me about’ (Participant #2).
Most participants reported not being offered information about T2DM-related resources from their HSPs. As one participant mentioned, ‘No, I have never had a dietician come and advise me or help me. I’ve been living here [shelter] for three years, and I have been telling them [the staff] that this food is not good for me, and I am going to get sick, and I am going to die soon by eating this food then you will know what I am talking about’ (Participant #7). Additionally, all participants indicated they would visit a Tamil-speaking dietician to manage their diabetes if given the opportunity.
Stress impacting T2DM health care perception and delayed medical attention
Stress played a significant role in shaping how participants perceived their diabetes health care needs, influencing their use of T2DM-related health services. While some participants did not see a connection between their stress and health, others recognized its impact on their diabetes management. For instance, one participant stated, ‘No, there is no connection between that [the civil conflict in Sri Lanka] and my illness. After I came to Canada, I developed diabetes in 6 to 7 years; that’s when I didn’t take any medications, and my doctor yelled at me’ (Participant #5). In contrast, many participants acknowledged that stress significantly contributed to their diabetes. Four male participants highlighted stress related to their precarious and stressful work schedules, particularly night shift work, as a major factor. One participant shared, ‘Paperwork means that we start at 8 in the morning, and just sit there, and with the work stress we will be there till 1 am at night…that is the time when my diabetes started…sometimes after working the entire day, I come home, and I can’t go to sleep. If they [workplace] asked me to go back to work, I have to go…that’s when my problem started’ (Participant #2). Similar to what other male participants reported, this participant mentioned that due to the unpredictable and demanding nature of his work, he could not even think about going to see a doctor for his T2DM symptoms.
Additionally, personal stressors also played a role in how participants perceived their diabetes management needs. The overwhelming nature of personal challenges overshadowed the importance of managing their diabetes. For instance, one participant (Participant #3) shared the daily anguish of her son’s disappearance, who is now presumed dead, during the civil conflict in Sri Lanka, which impacted her ability to prioritize her T2DM health care needs. Another participant shared several stressors in her life: (1) lack of support and isolation: ‘After having a c-section, I had no help, zero help, zero. Relatives lose connection and go away. Friends too…’, (2) health issues with her child: ‘My second kid…they [HSPs] gave him his injection when he was 2.5 months… and his legs … he couldn’t walk for 5 years…now he can walk with a brace’, 3) the death of a child: ‘10 years ago my son passed away… car accident… after I’m very worried, tension, every night [I] dream, night time no, didn’t sleep’, after that my whole body has tension. She summarized why she could not focus on her diabetes management by saying, ‘Life is broken… I cannot think of anything else…Okay, that’s okay’ (Participant #8).
These compounded stressors often resulted in delays in seeking medical attention, as participants did not perceive their symptoms as severe or felt overwhelmed by their circumstances. For instance, one participant who worked night shifts shared that he did not see a doctor before retirement, only to be immediately diagnosed with T2DM and critically high blood sugar levels that required urgent intervention.
Hesitation to take insulin and concerns about overtreatment
Five participants reported hesitation to take insulin because they believed it would cause their blood sugar levels to drop to an unhealthy level, resulting in side effects or even death. This belief might have originated from a close relative experience. The quotes below show some examples of participants’ hesitation to use insulin.
I’m scared that the injection is going to suddenly drop it [blood sugar level]. I’m scared that the injection is going to slow down my sugars so I’m going to try taking the medication and controlling my food for 2–3 months and see (Participant #3).
They also told me to go to a doctor and get the injection [insulin] right, but I got it, but I’m not doing it (Participant #8).
My wife received insulin many times and she passed away. At that time, I couldn’t speak about it, but [her blood sugar level] was 2 [mmol/L] for diabetes, and they [HSPs] still gave her insulin…Up till now, I have not rejected any new medication – except insulin. The doctor has strictly told me twice to take insulin, and I’ve said insulin is the one thing I will not take (Participant #4).
Theme 2 – Ability to seek health care: Reliance on trusted health service providers
The ability to seek refers to an individual’s willingness and capacity to seek out health care services based on their cultural, social, and personal preferences, as well as their understanding of their rights as individuals and the options available to them; all play a role in expressing their intention to seek medical attention (Levesque et al., Reference Levesque, Harris and Russell2013). This ability was expressed through cultural beliefs, social norms, and personal attitudes toward T2DM health care services.
Cultural loyalty to providers
Participants reported a strong cultural loyalty to their primary care provider, preferring to maintain a long-term relationship with a single doctor rather than seeking multiple opinions, even for diabetes-related care. This loyalty among participants often resulted in a reluctance to seek second opinions or contradict their primary care provider’s advice regarding diabetes management. One participant shared, ‘She [my primary care provider] told me that she will not treat me if I go see a doctor at the walk-in-clinic even for an emergency. I am scared so I don’t go’ (Participant #5), another participant shared, ‘We cannot question our own’ (Participant #4), indicating a cultural norm of not challenging the advice of Tamil doctors.
Reliance on health service providers for multidisciplinary referrals
All participants reported relying on their primary care providers for referrals to multidisciplinary team members, such as dieticians, physiotherapists, and diabetes education programs. Some reported this level of reliance was because they did not know how to use the Internet. One participant described how their primary care provider facilitated access to necessary specialist care, ‘…First I tried pills, then when that didn’t work…when my sugars went to 15…they [primary care provider] sent me to a dietician and when I went to a dietician they saw me and said okay you cannot continue like this with high level of sugar so they sent me to another specialist’ (Participant #1).
Participants who have accessed diabetes-related services such as diabetes education programs, dietician consults, or diabetes specialists reported they attended because their primary care provider told them to. Most of the participants (n = 6) were already directly connected to a centre that provides Tamil services in the Greater Toronto Area. However, participants who did not access these services reported that they would attend if their primary care provider recommended them to.
Theme 3 – Ability to reach health care: Reliance on others for transportation
The ability to reach refers to an individual’s capacity to physically access health care services (Levesque et al., Reference Levesque, Harris and Russell2013). We looked at the person’s ability and environmental factors such as geographic proximity, transportation options, mobility, and the flexibility of T2DM-related health care service hours to access T2DM services.
Participants reported their experience commuting to T2DM health services, highlighting both the benefits and challenges of using various transportation options (e.g., public transportation, family members). Eight participants shared that they rely on WheelTrans, a public transportation service designed for reliable and accessible transportation for individuals with disabilities (Toronto Transit Commission, n.d.). They noted the ease of booking rides over the phone or with the help of their caregivers. One participant shared, ‘I usually take two busses or three busses to go to the appointments. Do you know how many times I had to go to the hospital and pay for a taxi? The ambulance takes me sometimes if I’m not well…after all the challenges with transportation, I finally registered for WheelTrans…because it’s really hard to find the address of my doctors after I get off the bus…sometimes I get really confused’ (Participant #9). When asked about commuting during winter months, one participant shared, ‘It [WheelTrans] is good, they’ll carefully take you. They’ll hold your hand and carefully take you [to your appointment]’ (Participant #6). Despite the convenience, some participants reported significant delays with WheelTrans, resulting in long wait times.
Many participants relied on their caregivers (e.g., children, grandchildren, wives, or shelter staff) for transportation to T2DM health services. Three male participants reported relying on their wives for transportation or accompaniment to travel to T2DM-related appointments. This is illustrated by an older Tamil male participant who shared ‘She [wife] helps me with getting there and coming back’ (Participant #10). For participants, this meant that medical appointments were often scheduled based on the availability of their caregivers. One participant, for instance, mentioned that although her daughter was willing to take time off work to drive and support her to T2DM-related appointments, she often chose to skip these appointments to avoid burdening her daughter and causing her to lose income (Participant #3). In contrast, one participant shared the simplicity of attending regular virtual appointments (Participant #1).
Theme 4 – Ability to pay for health care: Financial factors
The ability to pay refers to an individual’s financial capability to afford health care services without significant economic hardship (Levesque et al., Reference Levesque, Harris and Russell2013). We asked participants about the affordability of services in relation to their income level, health insurance coverage for T2DM medications, out-of-pocket costs to access T2DM services or management, and indirect costs such as travel and time off work.
Limited income
All participants reported low income as a barrier to accessing T2DM-related health care services. Many participants depended on limited income sources, such as Old Age Security (OAS), which imposes strict eligibility criteria. For instance, one participant expressed his frustration: ‘I want to go to Sri Lanka for Ayurveda and Homeopathy…but I am unable to go…I don’t have the money to go, I don’t have the permission to go, if I go they’ll [OAS] stop all the money that I get…this is all the torture they do to us’ (Participant #6). Another participant hesitated to criticize a service while discussing financial barriers to transportation. She stated, ‘It’s a senior ticket, right…it is difficult but what can I do, he’s not going to give us the ride for free just because we’re seniors, right? I shouldn’t say it’s difficult because they come and pick us up at the door and drop us at the door (Participant #7).
Reliance on family members to access T2DM-related health care services was a recurring theme in our findings, particularly regarding finances. A participant shared that before obtaining an Ontario Health Insurance Plan ‘health card’ in Canada, she had to rely on financial support from relatives to access health care services (Participant #4). Another participant, who was under the age of 65, shared, ‘…they [insurance company] rejected me [my application] since I am a high medication cost person…so I can’t get medication from them. But now my husband is asking me: if I want to retire now or soon, what do we do for this medication?…My husband is saying that [he] must continue working for [my] medication’ (Participant #1).
Theme 5 – Ability to engage: Navigating health care through cultural and communication factors
The ability to engage refers to an individual’s ability to partake in decision making and treatment decisions, engage with health care providers, and adhere to recommended treatments effectively (Levesque et al., Reference Levesque, Harris and Russell2013). We asked participants about their communication skills, trust in health care providers, understanding medical instructions, support systems for following treatment plans, and the importance of receiving care that is appropriate. We found three sub-themes under theme 5 including: (1) language barriers, (2) challenges in provider–patient relationship and health care access, and (3) lack of culturally relevant advice from providers.
Language barriers
Participants mentioned experiencing language barriers unless referring to a Tamil provider. Specifically, some participants reported that language barriers affected their interactions with health care services, leading them to prefer providers who speak Tamil, regardless of their overall satisfaction with the specific HSP. One participant expressed the challenges, stating, ‘When it comes to illnesses, people should go to those who speak the same language as them only. If I were to go to an English doctor, I wouldn’t understand what he says’ (Participant #5). Most participants (n = 8) chose their primary health care provider solely based on their language preference.
Those participants who could not speak English or did not have a Tamil provider would have a caregiver with them to translate for them or would find an interpreter. However, a participant shared a downside of relying on caregivers for interpretation, stating, ‘My daughter is the one who takes me, and she won’t tell me all the information because she thinks I will be scared’ (Participant #5). One participant expressed difficulty obtaining interpretation services due to the primary care provider refusing to talk to someone over the phone for translation. The participant mentioned their attempt to arrange translation services, saying, ‘I arranged someone to do translation for me in Tamil over the phone, and I asked him [primary care provider], but he said no, I can’t allow that…’ (Participant #8).
Challenges in patient–provider relationships
Participants expressed high regard for their medical doctors; however, there was a notable lack of rapport to facilitate open discussions about diabetes health concerns with providers. Instead, participants reported that they preferred to rely on family members or friends for medical advice and emotional support due to perceived strain and shortcomings in the patient–provider relationship. One participant shared their experience with the lack of personalized care, stating, ‘She [primary care provider] asks me why I came in. Since I do not have any urgent issues with managing my diabetes, I tell her about my body pains, like knee pain and other body parts. She says okay and then goes to the next room to see another person. After that, she will write me a prescription. She would not tell me what it is’ (Participant #5). Another participant highlighted the perceived lack of comprehensive care from primary care providers, stating, ‘These people [primary care providers] are focused on writing prescriptions, they are not focused on giving advice. They don’t have the experience to…even if they did have the experience to and wanted to give advice, they are also not in the place to give advice because they also have diabetes and heart disease, they don’t even have time to take care of themselves…how are they going to take care of us’ (Participant #7).
Participants hesitated to share negative experiences with their primary care providers due to fear of repercussions such as losing access to care. For example, one participant said, ‘She yelled at me…but other than that, she has not done anything bad’ (Participant #8), demonstrating a reluctance to criticize her primary care provider openly.
Participants’ access to health care services often depended on their relationships with their HSPs. Those who had positive relationships with their HSPs reported feeling comfortable contacting them regarding their diabetes management when needed. One participant expressed her comfort by stating, ‘My doctor only speaks English…I don’t have any issues since it’s been a long time since I moved so it’s okay now. She talks to me like family, so I don’t have issues talking to her’ (Participant #1). In contrast, participants who had challenging relationships with their HSPs tended to avoid seeing them; they reported feeling unsupported and dissatisfied with the care received. A participant shared their concerns about timely communication with their primary care provider, stating, ‘…When she [primary care provider] sends me to get diagnostic tests, she receives all of the reports, and she doesn’t call me right away, she will call me after 4–5 days and then the ladies there will be searching for my papers That makes me mad…That caused some issues in my relationship with my family doctor’ (Participant #5).
Inadequate patient-centered communication was a common issue reported among participants. Some participants experienced discomfort in changing HSPs or questioning medical advice related to managing their diabetes, influenced by past negative interactions and perceived authority of HSPs. One participant perceived their primary care provider’s approach as dismissive and described it as, ‘She [primary care provider] only tells me things to do if my [blood sugar] levels increase. So, she doesn’t tell me anything…she will write my prescription, and if I ask her for anything else, she will say that she wrote the prescription, and I can get my medicine at the pharmacy’ (Participant #7).
Lack of culturally relevant advice from providers
Participants had varying opinions on culturally relevant advice from HSPs. Most participants (n = 8) noted that they received general advice about managing their diabetes, with comments such as ‘they [HSPs] give me general advice’ (Participant #8) or ‘No no, they just me give common [general] advice. There is nothing like culture, it is just general advice that they give for everyone’ (Participant #3). Despite this, there was a general consensus that ‘providing [culturally relevant advice] would be great’ (Participant #3). However, one participant disagreed, stating, ‘I think that is wrong. Nobody can say that everyone in a community is the same…’ (Participant #4).
Participants highlighted the challenge of adhering to diabetes-specific dietary advice that did not align with their cultural food practices. One participant mentioned accepting their dietician’s advice on a diabetic diet, which was based on Western foods, saying, ‘They can only tell me what they know’, but the participant reported that ultimately, she was not able to implement the dietician’s advice (Participant #1). Similarly, another participant struggled to follow the dietician’s advice, saying, ‘Yes, I was able to follow it…for what two days…After that, it’s hard because you know you can’t change your habits. I was eating rice for 40 years and now you’re telling me not to. How am I supposed to do that?…I did [tell her about my cultural food preferences], she’s Asian too…she also eats rice too…It’s hard to eat by their recommendation because we can’t get energy without eating carbohydrates. We don’t eat a lot of meat like other people we just eat fish or chicken…in a small portion. Westerners eat more…’ (Participant #3).
Discussion
This qualitative study aimed to explore the experiences of Tamil older adults in accessing T2DM-related health care services. The findings revealed key barriers and highlighted some facilitators to accessing T2DM-related health care among Tamil older adults. The ability to perceive was influenced by limited awareness of health services, personal and work-related stress, delayed medical attention, and hesitations about insulin use due to fears of overtreatment. The ability to seek highlighted reliance on trusted primary care providers for referrals, cultural loyalty to providers, and reluctance to seek second opinions. For the ability to reach, participants depended heavily on caregivers or public services like WheelTrans for transportation, with challenges arising from accessibility, caregiver availability, and long wait times. Financial constraints under the theme of ability to pay were evident, with participants reporting difficulties affording medications and transportation, as well as out-of-pocket expenses, and often relying on family support. Finally, language barriers strained patient–provider relationships, and a lack of culturally relevant advice related to diet shaped the ability to engage. While participants valued Tamil-speaking providers and trusted their primary care provider, they faced challenges receiving personalized and culturally appropriate guidance.
Overall, Tamil older adults perceived five barriers to accessing T2DM-related health services including (1) timely and informed diabetes management, (2) reliance on trusted HSPs, (3) reliance on others for transportation, (4) financial factors, and (5) navigating health care through cultural and communication factors. The insights gained from these findings allowed us to propose targeted practice recommendations to improve access to T2DM-related health care services for Tamil older adults.
Recommendation 1 – Necessity of a centralized resource hub
Findings from our study suggest the establishment of centralized resource hubs to increase awareness of Tamil older adults about the services available and, therefore, increase their service utilization. Our participants had limited knowledge about the diabetes-related services available to them. This finding aligns with the broader immigrant experience of accessing health care in Canada (Tsai & Ghahari, Reference Tsai and Ghahari2023). Participants in our study reported that they often discovered these services by chance rather than through direct referrals from HSPs, pointing to a critical communication breakdown within the health care system and highlighting the need for improved outreach to ensure Tamil older adults are aware of and guided to available relevant resources. Based on these findings from our study, we suggest the establishment of in-person centralized health care resource hubs (‘hub’) to address this gap by serving as focal points for gathering and disseminating comprehensive information related to T2DM services (Al Shamsi et al., Reference Al Shamsi, Almutairi, Al Mashrafi and Al Kalbani2020). This hub could help HSPs, and Tamil older adults easily access T2DM-related information about local resources, educational materials, and support services. Community centres serving Tamil older adults should consider expanding their mandate to serve as a centralized health care resource hub. Literature supports the effectiveness of such centralized resources in improving health literacy and service utilization (PHAC, 2021).
While digital resources are increasingly common, printed materials remain essential for older adults, particularly those uncomfortable with technology (Hoffmann & Worrall, Reference Hoffmann and Worrall2004). Therefore, a printed list of local T2DM resources could also be developed and disseminated to Tamil older adults at these hubs and across settings where Tamil older adults frequent. Creating and distributing printed brochures and up-to-date directories like the Yellow Pages could help Tamil older adults access culturally relevant information about T2DM-related health services. This approach is supported by evidence suggesting that direct mailings can effectively reach and inform older adults about health services (Black et al., Reference Black, Weinhold, Frank, Kolander and LaMotte2019). These materials should detail available diabetes resources, their costs, transportation options, and contact information. To ensure accessibility, the materials should be in English and Tamil. Collaborations with health service providers, local community organizations, and leaders will facilitate distribution. Engaging with community leaders and organizations that serve the Tamil community can help distribute and update mailing information.
Recommendation 2 – Tailor T2DM education programs
Tailored T2DM education programs should be developed to empower Tamil older adults to navigate the health system more independently (Tsai & Ghahari, Reference Tsai and Ghahari2023). Our study findings suggest that these T2DM education programs should focus on providing practical tools and clear guidance that can help Tamil older adults navigate the health care system effectively, such as:
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• managing emergency episodes such as a hypoglycemic event,
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• managing their relationship with their primary care provider,
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• utilizing available health care resources, such as walk-in clinics, after-hours care, mental health resources, T2DM-specialist services, and
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• accessing interpretation services, obtaining financial resources, and understanding medical information such as insulin use.
This T2DM education program should also provide Tamil older adult caregivers with T2DM with tools to help them better support their loved ones in navigating the Canadian health system and managing their own T2DM. These suggestions are also informed by a study in Ontario, which found that South Asian caregivers often prioritize family caregiving over their own diabetes self-management (Hafleen et al., Reference Hafleen, D’Silva, Mansfield, Fierheller, Chaze, Parikh, Martel, Malhotra, Mutta, Hasan and Zenlea2024). Despite our study findings highlighting the considerable involvement of family members, it seems like the caregiver role is often designated to one person in the family unit; therefore, this T2DM-specific program should encourage a family-based approach to caregiving (Hafleen et al., Reference Hafleen, D’Silva, Mansfield, Fierheller, Chaze, Parikh, Martel, Malhotra, Mutta, Hasan and Zenlea2024). Providing caregivers with this program via interactive workshops, role-playing scenarios, and culturally tailored T2DM information materials that resonate with their experiences and concerns could empower Tamil older adults to access health care services better and manage their T2DM (Camargo-Plazas et al., Reference Camargo-Plazas, Robertson, Alvarado, Paré, Costa and Duhn2023; Langa et al., Reference Langa, Vijan, Hayward, Chernew, Blaum, Kabeto, Weir, Katz, Willis and Fendrick2002).
Tamil older adults should be involved in the development of T2DM self-management programs. As a Tamil individual once noted, ‘Rather than talking in Tamil, they should be talking to Tamils’, which we fully agree with (George et al., Reference George, Kliewer and Rajan2015, p. 21). This recommendation stems from our learning that Tamil older adults can provide unique insights into the barriers that hinder them from accessing health care services. Their involvement will ensure that health care interventions developed are more culturally sensitive, accessible, and effective. Additionally, Tamil researchers should lead research efforts within the Tamil community to ensure that the nuances of cultural and lived experiences are appropriately captured and addressed in the proposed self-management program (Agarwal et al., Reference Agarwal, Banerjee and Brar2024). This presents an opportunity to adopt co-design methodologies, which have become a key priority in health research. Co-design positions the end users (i.e., Tamil older adults) as co-creators in designing interventions, leveraging their lived experience to create solutions (such as services or care pathways) that are more relevant, acceptable, and effective (Pettersson et al., Reference Pettersson, Klompstra, Jirwe and Jaarsma2023; Slattery et al., Reference Slattery, Saeri and Bragge2020).
Recommendation 3 – Increase affordable transportation options
Findings from our study suggest that the practicality of accessing T2DM services is as crucial for Tamil older adults as the availability of these services, highlighting the need for increased affordable transportation options specifically for older adults needing to access T2DM-related health services. A study in Michigan, U.S., found that the availability of specialized transportation services, such as paratransit or senior vans, was crucial for older adults to maintain regular medical appointments (Kotval et al., Reference Kotval-K, Keilman and Wang2020). Similarly, in California, providing older adults with free and unlimited access to ride-sharing services, such as Lyft (San Francisco, CA), significantly improved their ability to attend medical appointments by removing transportation barriers (Saxon et al., Reference Saxon, Ebert and Sobhani2019).
Given the significant reliance on others for transportation among Tamil older adults, implementing discounted or free public transportation, free ride-sharing programs, or specialized medical transport services would alleviate these challenges and ensure that the older adults can physically access necessary T2DM health care without the added stressors. Our findings emphasize that transportation barriers are significant obstacles, including long wait times, scheduling constraints, financial costs, and perceived burdens on caregivers. Addressing these through targeted transportation solutions is critical to enhancing health care access for Tamil older adults.
Recommendation 4 – Encourage a diabetes-integrated care approach in health care settings
The need to further encourage integrated care in health care settings for T2DM was suggested by our findings to partly address the cultural loyalty Tamil older adults demonstrate toward their primary care providers. Integrated care is defined by the World Health Organization (2016) as, ‘Initiatives seeking to improve outcomes for those with (complex) chronic health problems and needs by overcoming issues of fragmentation through linkage or coordination of services of different providers along the continuum of care’ (Nolte & Pitchforth, Reference Nolte and Pitchforth2014, p. 6). In the context of diabetes care, integrated care refers to health care approaches that coordinate the various components of diabetes management, ensuring seamless clinical care for individuals with diabetes, including primary care providers, T2DM specialist services, health navigators, and community resources to provide comprehensive and coordinated care (Wenzel & Simmons, Reference Wenzel and Simmons2016). This approach could integrate primary and secondary care settings. The integrated care approach may alleviate fears of disrespecting their primary care providers and their fear of over-treatment by seeking care from multiple disciplines, as participants in this study mentioned. Such an approach could encourage primary care providers to support collaborative care where diverse health care services are promoted.
Participants in our study demonstrated a significant cultural loyalty to their primary care provider, preferring to maintain long-term relationships with a single doctor and a reluctance to seek second opinions or contradict their Tamil’s advice. This loyalty was further reinforced by participants who shared that they were more inclined to utilize T2DM health services if referred by or encouraged by their primary care provider. This highlights the pivotal role of primary care provider referrals as key motivators in engaging South Asians in T2DM care (Waqar & Kuuire, Reference Waqar and Kuuire2024).
This finding of cultural loyalty is about maintaining continuity and reflects the broader influence of trust and respect for authority figures deeply rooted in South Asian social norms, which impacts health care decisions (Ahmad et al., Reference Ahmad, Riaz, Barata and Stewart2004). For example, similar to our study findings, a study in Australia found that doctors are seen as authority figures (or ‘like a god’), making the participant from Sri Lanka feel hesitant to question them (Adhikari et al., Reference Adhikari, Devkota and Cesuroglu2021, p. 6). However, this loyalty to Tamil primary care providers may also contribute to delays in seeking alternative care or second opinions, potentially leading to underutilization of available health care services (O’Mahony & Donnelly, Reference O’Mahony and Donnelly2007).
In addition to the above practice-focused recommendations, the study suggests considering a theoretical adjustment by including stress as a component in the access to health care framework (Levesque et al., Reference Levesque, Harris and Russell2013). Participants in this study highlighted challenges related to high levels of stress that impacted their access to T2DM-related care, which aligns with the Levesque et al. (Reference Levesque, Harris and Russell2013) framework’s focus on barriers on an individual level to access the health care system. Despite stress being frequently cited as a barrier to accessing health care (De Vries, Reference De Vries2001; Forray et al., Reference Forray, Oltean, Hanft-Robert, Madzamba, Liem, Schouten, Anthonissen, Swartz, Cherecheș, Higgen, Hall and Mösko2024; Tsai & Ghahari, Reference Tsai and Ghahari2023), Levesque et al.’s (Reference Levesque, Harris and Russell2013) framework does not explicitly consider stress as a component of access. We believe incorporating stress under the ability to perceive dimension could improve the framework’s applicability for immigrant populations and broaden the understanding of access to help identify more tailored interventions. While Levesque et al.’s (Reference Levesque, Harris and Russell2013) framework is robust, it may require adaptation to fully capture the experiences of priority groups facing high-stress levels.
Strengths and limitations
This study offers valuable insights into an underrepresented population (Tamil older adults) whose health care experiences are rarely documented. The use of interpretive description allowed for in-depth exploration of participants’ lived experiences, generating findings with practical implications for culturally tailored care. Interviews conducted in participants’ preferred language (Tamil) by a Tamil-speaking researcher encouraged rich narratives. Member checking and dual coding enhanced the credibility and trustworthiness of the findings. Furthermore, applying Levesque et al.’s (Reference Levesque, Harris and Russell2013) health care access framework provided a structured lens for analysing barriers and facilitators, which strengthened the study’s rigor.
One notable limitation of this study is that many participants were recruited from a community centre, where they already accessed community support and were in closer proximity to access diabetes health services, making it easier for them to seek care if they wished to. This experience is not representative of many Tamil older adults in or around the Greater Toronto Area. In line with interpretive description, findings cannot be generalized to all Tamil older adults in Toronto or broader, but they can offer insights into the concerns and needs of a specific sub-group that are relatively well-served compared to those who do not live close to such services.
Conclusions
Our study explored Tamil older adults’ experiences in accessing T2DM-related health services in the Greater Toronto Area using Levesque et al.’s (Reference Levesque, Harris and Russell2013) access to care framework. The findings identified five key themes influencing Tamil older adults’ access to T2DM-related care: timely and informed diabetes management, reliance on trusted health service providers, reliance on others for transportation, financial factors, and navigating health care through cultural and communication factors. These findings informed targeted recommendations, including the development of centralized health care resource hubs, dissemination of printed information on T2DM-related resources, an integrated care approach, and T2DM education programs for Tamil older adults. The study also highlights the importance of including stress as a factor in the health care access framework.
Future research should evaluate the cultural fit and effectiveness of current T2DM education programs for Tamil older adults. Research should explore how these programs meet Tamil older adults’ unique health needs and identify areas for improvement. Future studies should pilot test integrated care approaches that include primary care providers, T2DM specialists, and community resources to promote multidisciplinary care. Future research should evaluate the effectiveness of these approaches in improving coordinated and comprehensive care. Continued engagement with Tamil older adults and caregivers is critical to developing more equitable, responsive, and culturally safe diabetes care.
Acknowledgements
The authors deeply thank all the participants for sharing their experiences and Vasantham Tamil Wellness Centre for the opportunity to connect with participants for this study.
Open access
