With the increase in ethnocultural diversity in the Canadian demographic landscape, it is imperative for healthcare providers and policy makers to understand the needs and preferences of racialized immigrant older adults. Previous research has shown that to increase patient satisfaction with care and lower treatment costs it is important to effectively involve patients in their care. However, we currently lack the understanding of how racialized immigrant older adults want to engage as patients, the factors that influence their involvement in their own care, and who they want involved in the decisions surrounding their care. To address this gap in the literature specifically for the South Asian community, one of Canada’s largest and fastest growing populations, our study aimed to understand South Asian older adults’ experiences with and approaches to patient engagement and shared decision-making. We conducted in-depth individual and dyadic interviews (n=28) in six languages, utilizing a multilingual cross-cultural qualitative approach. Our findings highlight the nuances of language and how miscommunication can arise even when patients and providers are conversing in the same language. Our study also found that patient engagement and shared decision-making, including the desire for family involvement, is heavily influenced by both culture and gender. Additionally, perceptions of patients regarding the status of physicians can have a notable influence on patient engagement, leading to an increased tendency for patients to agree with the physicians’ approach to care. These findings suggest that effective engagement between providers and patients require a tailored approach that extends beyond white-centric approaches to decision-making and communication.
Research Article
“And who would question God?”: Patient engagement and healthcare decision-making of South-Asian older adults in the Canadian healthcare system
https://doi.org/10.21203/rs.3.rs-3952307/v1
This work is licensed under a CC BY 4.0 License
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patient engagement
shared decision-making
person-centered care
racialized immigrant older adults
To provide effective and appropriate care, healthcare professionals must be aware of the heterogeneity in culture, language, health beliefs, and other characteristics that are present, and continuously shifting, amongst ethnocultural communities. Engaging patients and their families in the healthcare process, and thus allowing for a tailored and person-centered care approach, may offer a path to higher-quality, more effective care for racialized immigrant older adults [1]. Shared decision-making, which has been called "the pinnacle of person-centered care," [2] involves care providers and recipients collaborating to determine the best course of action while considering the patients' values and preferences [3]. Patient engagement, which is a pre-requisite for shared decision-making, involves meaningfully engaging patients in various aspects of the care delivery process to increase their capacity to make evidence-informed decisions about their own health [4–6]. In the Canadian context, patient engagement holds significant importance due to two interrelated aspects: the aging population and the growing diversity primarily driven by migration.
Background
The importance of patient engagement and shared decision-making
The biomedical “Western” medical model of healthcare has historically been firmly rooted in the idea that, in certain instances, it is permissible to overlook a person's opinions in favour of advancing their health [7–11]. This practice, termed paternalism, is based on the assumption that patients need to be safeguarded since they are ill-equipped to determine what is ideal for them [12,13]. Medical and health research has now abandoned this notion, recognizing that while healthcare providers may be experts in medical knowledge, patients are the experts in their own health. As explained by Bournes [14], “to judge people as not knowing what is best for their lives is a way of labelling that is antithetical to the basic assumptions of human becoming”. Patients are now widely acknowledged to be the only constant in the care continuum, and it is critical to recognise each patient's unique lived experiences and how it impacts the care they want [15,16].
Research indicates that as healthcare options have become more abundant and complex, patients who have a stronger connection with their healthcare providers and receive ongoing support throughout the treatment journey tend to express higher levels of satisfaction with the care they receive [17–19]. This involves evaluating the values, objectives, abilities, and preferences of patients in order to reach consensus on treatment plans that are mutually agreed upon [18]. There is also strong evidence that the engagement of patients in primary care decision-making improves chronic disease management and health outcomes [20–23]. Other international studies also reveal that patient involvement decreases health inequities, enhances the standard of care, and increases patient trust [24,25].
Patient engagement and shared decision-making in the context of older adults
Patient engagement is of particular significance for marginalize(1)d populations who face challenges in accessing healthcare services and are frequent users of the healthcare system [26,27]. One such cohort is older adults [28,29]. With the aging population and the growing prevalence of comorbid and chronic conditions, an increasing number of older adults will encounter the complexities of making ongoing healthcare decisions [30–33]. Current evidence indicates that older adults who actively participate as partners in their care have the capacity to enhance health outcomes by embracing health-promoting behaviors and, therefore, reducing health disparities [22,34–39]. More specifically, active involvement of individuals in their healthcare are more likely to experience better physical [40], psychological [41], and interpersonal results [42]. Other studies also report organisational results, such as cost reductions, with increase in patient engagement [43]. Overall, it is more important for older adults, along with their families, to take an active role in their healthcare given all the responsibilities and decisions that come with it [30,44]. However, several studies have found lower decision control preferences, i.e., the level of control patients desire over their medical decisions, amongst older adults [45–49]. Eldh [50] found that not having sufficient information (e.g., not being given appropriate details) and not being acknowledged (e.g., not being heard or recognized as an individual with unique needs and concerns) were important factors contributing to patient non-participation. Moreover, non-participation involved encountering healthcare systems that prioritized organizational interests over patient-centered care and feeling uncertain during healthcare interactions [50]. It has also been observed that individuals, including older adults, with lower education levels and those with minority status tend to have lower preferences for decision-making [49,51–53]. Authors such as Sogaard [54] recommend that with the increase in the aging population and the rising prevalence of multiple chronic conditions, it is imperative to proactively engage in systematic and timely discussions with patients regarding the future and current scenarios related to their health and well-being as well as their priorities.
Patient engagement and shared decision-making in the context of racialized immigrant older adults
Decision-making in a variety of clinical and healthcare contexts can be especially challenging because it is entangled with sociocultural beliefs and value matrices that differ for care provider and care recipient [55] Consequently, a disparity may arise between the communication approach adopted by healthcare providers, which plays a vital role in decision-making and patient engagement, and the preferred approach desired by patients. For instance, currently, a fundamental value within Eurocentric decision-making models in healthcare is patient autonomy [55,56]. However, several ethnocultural groups have historically held alternative paradigms for their decision-making process [51]. An illustration of this can be seen in a study conducted by Blackhall and colleagues [51], which demonstrated that older adults of Korean and Mexican origin residing in the United States expressed a preference for their family members to be responsible for making important healthcare decisions, such as those concerning the use of life support, rather than making those decisions themselves. A separate study examining Southeast Asian communities highlights that the collaborative communication approach promoted in literature of the Global North may not be directly applicable to other cultures, and notably, it may not be the most suitable style for the specific context of racially immigrant communities [57]. Additional research has investigated the notion of "equity," which plays a pivotal role in a collaborative communication approach and has found that it is not inherent in the established norms, values, and beliefs of certain Asian cultures that are deeply rooted in a hierarchical social structure [58–60]. To mitigate such a mismatch between patients and providers, culturally and linguistically diverse communities may require additional attention during the process of healthcare decision-making, owing to their unique experiences related to language and cultural values [61,62]. Also, specific to racialized patients, Cooper-Patrick and colleagues[63] have noted that healthcare providers may involve white patients in decision-making processes more than racialized individuals. A subsequent study by Levinson [49] found that although the factors contributing to racial disparities are multifaceted, individuals from racialized groups are more inclined towards a physician-directed approach, even when socioeconomic status and education are taken into account. Newer immigrant populations may experience these difficulties to a greater extent, including challenges such as communication barriers and a feeling of isolation from the broader community [64,65].
While the majority of the attention in the literature on healthcare communication has been focused on patient-physician interactions, family members and their input in making healthcare decisions has received far less attention [66,67]. The participation of family members in medical decision-making is a significant cultural factor [68,69] that can impact the exchange of information and shared decision-making during healthcare consultations [70]. Studies indicate that individuals' comprehension of health and illness within a familial context is shaped by a combination of personal experiences and shared cultural beliefs and practices [71,72]. Cultural elements can impact the dynamics among patients, their families, and healthcare providers, potentially influencing satisfaction levels and adherence to medical recommendations [66]. Current literature indicates that patients from cultures that place a larger importance on family responsibilities, solidarity, and harmony are also more likely to prefer higher levels of family engagement [73–76]. Few studies have examined family involvement in the care context of racialized immigrant older adults, and how these older adults often depend on social support from their family, as well as how their family members play a significant part in their decision-making about their health care [77,78]. However, family engagement, although acknowledged as a crucial component of patient-centered care [79], is poorly understood, especially across cultural boundaries [66].
Despite evidence pointing towards the importance of patient engagement, there have been no Canadian studies that have specifically evaluated patient and family involvement within racialized immigrant older adult communities [80]. We currently lack an evidence-based understanding of how or if racialized immigrant older adults are engaged in their own healthcare. Furthermore, it is yet unknown how patient/family partnership approaches for health systems navigation will operate with an increasingly linguistically and culturally diverse care recipient pool. According to Parsons [81] healthcare providers need training and resources to assist with patient education, awareness, and shared decision-making to encourage patient and family engagement. However, there is no research on what this may look like for specific ethnocultural populations, including the South Asian community, which is one of Canada's largest and fastest growing sub-populations. A key component of understanding patient and family engagement will be to understand shared decision-making approaches utilized in the racialized immigrant communities. Therefore, the present study was designed to (1) examine South Asian older adults’ experiences and approaches to patient engagement, (2) understand what collaborative healthcare decision-making looks like for this community, and (3) understand factors that influence patient engagement and healthcare decision-making in this population.
Our study is embedded in a larger research study [82] which is aimed at describing the role that racialized immigrant older adults are/are not taking in managing their own health care from the viewpoints of the participant groups (older adults, caregivers, and healthcare providers). The second phase of this work will be to develop a co-design process with these participants, creating linguistically and culturally sensitive/aligned tools, resources, or solutions to support engagement of racialized immigrant older adults in managing their care.
Research design and approach
In-depth individual and dyadic interviews were conducted in multiple South Asian languages employing a multilingual and cross-cultural qualitative approach, with an emphasis on solutions-oriented inquiry [83]. An integrated knowledge translation method [84] was used, collaborating with community partners as we constructed the research questions and established our chosen methodological approach [85]. The chosen methodology for this study is qualitative description [86]. While the description of this work seems linear, it is crucial to remember that these are iterative processes in which we worked with the community partners and participants to continuously learn and improve [87].
We actively collaborated with racialized immigrant older adults during all research phases. To support relationship-building prior to the interviews, I participated in 167 hours of online community events (e.g., community yoga and deep-breathing sessions), in place of the in-person community engagement that we had planned prior to the pandemic. Prior to conducting the interviews, this active engagement with participants allowed the research team to establish rapport and trust with the participants. The research team intentionally adopted this collaborative approach to enhance the rigor and quality of the data collection process and to enable reciprocity between participants and researchers to avoid extractive research practices. In the extractive approach to research, communities are excluded from the process of defining the research's scope and determining the credibility of its findings [88–90]. Chambers [91] characterizes this as a situation where outsiders, i.e., researchers, obtain information for their own gain, rather than for the benefit of the groups and communities the research is conducted with and for. Ethics clearance was obtained through the University of Waterloo Office of Research Ethics (ORE #43297).
Study setting, study population, and sample
We conducted this research in the South-Western region of Ontario, Canada, which is one of the major destinations for all immigrants to Canada and which includes a range of diverse South Asian communities. The use of the term "South Asian" can oversimplify and generalize a diverse group of people, potentially disregarding their unique lived experiences and individual identities. To address this, instead of relying on the term "South Asian" or country of origin, we chose to recruit participants based on the languages they spoke. This method enabled us to identify groups that shared a common culture through language rather than being constrained by arbitrarily drawn colonial borders [92].
The study included participants who were older adults (60 years or older) from the South Asian community, residing in Southern Ontario. To be eligible, individuals needed to be capable of giving informed consent and able to conduct the interview in one of the following languages: Bangla, English, Hindi, Punjabi, Tamil, or Urdu. These languages were chosen as they are the most commonly spoken South Asian languages in the region. As we were working with immigrant populations, we adopted the World Health Organization's (WHO) age cut-off of 60 for defining older adults, which aligns with how the term "older adult" has been used in previous studies involving individuals from South Asia [93–95].
Recruitment
Participants were recruited using purposeful sampling to provide richness to the data set [96, 97]. The use of purposeful sampling was chosen because it can be used to recruit participants with in-depth knowledge of the phenomenon of interest [96, 97]. To ensure inclusivity, participants were recruited from various South Asian community organizations, employing a combination of email, recruitment posters, and word-of-mouth methods within these communities. Furthermore, some of the initial participants voluntarily engaged in snowball sampling [98] by sharing the recruitment materials with their friends and family members who met the eligibility criteria. This collaborative approach helped expand the participant pool. Apart from personal and professional networks, community outreach and engagement were on-going processes throughout all the research phases. All participants received a letter of information clarifying their involvement in the project and describing the nature of the study. Letters of information were sent in advance of the interviews or dyad interviews via email and verbal consent was taken and recorded (with timestamp) at the beginning of the interview. Following the completion of the interviews, the participants received an honorarium (a $20 gift card of their choice).
Data Collection
Data collection took place during the ongoing COVID-19 pandemic, necessitating adaptations in the interview process. As a result, all interviews were conducted remotely, either through telephone or video calls, ensuring the safety and convenience of the participants. The interviews were scheduled at a time of participants’ choosing. Participants were asked to select either the individual or dyadic interview option. The determination of the sample size followed the principle of information power, as proposed by Malterud [99]. According to this concept, the sample size was dynamically determined during the data collection process, taking into account the depth and richness of the data obtained. Twenty-eight interviews were conducted in the following languages: Bangla, Hindi, Urdu, Punjabi, and English. I speak the listed languages (other than Tamil), and conducted all the interviews in Bangla, Hindi, Urdu, Punjabi and English. The Tamil interviews were conducted by a multilingual Research Assistant proficient in Tamil and a member of the Tamil community in Canada. Interviews lasted an average of 84 minutes (min: 32, max: 120). Refer to Table 1 for sample characteristics.
A consistent interview guide was utilized for both dyad (spousal) and one-on-one interviews, although the wording of the questions was tailored to suit each interview format. For instance, dyad interviews were designed to be longer than one-on-one interviews to ensure that all participants were asked the same set of questions. The interview guide started with general questions about participants’ healthcare experiences, followed by specific probes and follow-up questions. For example, if a person mentioned that their children are involved in their healthcare decision-making, the interviewer then followed up with queries such as: how do your children help you make those decisions? Are any other family members also involved in this process? Please refer to Table 3 for a sample of the interview guide questions. Interviews were audio recorded and field notes were taken within 24 hours. The field notes contained non-textual and auditory insights into interviews, which were valuable in understanding the participants' intended meanings [100]. To protect the anonymity of participants, pseudonyms were assigned to them during the analysis process (refer to Table 2 for the pseudonyms assigned to each participant). During the data collection phase, the broader research team held regular meetings to discuss various aspects, including the interview guide, translation inquiries, and initial findings. These team meetings were documented through recordings.
| Interview Sample (n = 28) | |
|---|---|
| Age | Mean: 74 (min: 60, max: 88) |
| Gender Men Women | 13 15 |
| Country of Origin India Bangladesh Sri Lanka Pakistan | 11 6 7 4 |
| Years in Canada | Mean: 34 (min: 10, max: 62) |
| Education Secondary Undergraduate Graduate | 3 14 11 |
| Marital Status Married Widowed Divorced | 25 1 2 |
| Lives with Spouse Spouse & children Spouse, children, & grandchildren Alone | 8 14 3 3 |
| Has family doctor Yes No | 26 2 |
| English Proficiency (self-reported) Reading Poor Well Very well Writing Poor Well Very well Speaking Poor Well Very well | 1 2 25 0 2 26 2 0 26 |
| Pseudonym | Age | Gender | Country of Origin | Religion/Faith System | Length of time in Canada (Years) | Type of Interview Conducted | Language interview conducted in |
|---|---|---|---|---|---|---|---|
| Ashish | 88 | Male | Bangladesh | Hinduism | 29 | Individual | English |
| Rajib | 74 | Male | Bangladesh | Hinduism | 12 | Dyad | Bengali |
| Aarini | 62 | Female | Bangladesh | Hinduism | 15 | Dyad | Bengali |
| Prisha | 63 | Female | India | Hinduism | 51 | Individual | Hindi |
| Shivanya | 76 | Female | India | Hinduism | 51 | Individual | Tamil |
| Shankar | 86 | Male | India | Hinduism | 52 | Individual | English |
| Zarina | 60 | Female | Pakistan | Islam | 17 | Single | Urdu |
| Irfaan | 68 | Male | Pakistan | Islam | 21 | Dyad | Urdu |
| Aaron | 75 | Male | India | Christian | 57 | Dyad | English |
| Aileen | 68 | Female | India | Christian | 52 | Dyad | English |
| Prithvish | 71 | Male | India | Hinduism | 45 | Individual | Tamil |
| Shastik | 77 | Male | Sri Lanka | Hinduism | 26 | Dyad | Tamil |
| Gayatri | 78 | Female | Sri Lanka | Hinduism | 31 | Dyad | Tamil |
| Sharvaa | 73 | Female | Sri Lanka | Hinduism | 25 | Dyad | Tamil |
| Abhijeet | 75 | Male | India | Hinduism | 45 | Dyad | Tamil |
| Tarala | 78 | Female | Sri Lanka | Hinduism | 28 | Single | English |
| Sarath | 82 | Male | Sri Lanka | Hinduism | 28 | Dyad | English |
| Amit | 86 | Male | India | Hinduism | 53 | Single | English |
| Shalini | 67 | Female | India | Hinduism | 42 | Dyad | Hindi |
| Jamal | 60 | Male | Pakistan | Islam | 16 | Dyad | Urdu |
| Beena | 73 | Female | India | Hinduism | 34 | Single | English |
| Ananya | 61 | Female | India | Hinduism | 32 | Single | Hindi |
| Janaia | 64 | Female | India | Hinduism | 10 | Single | English |
| Sharad | 87 | Male | India | Hinduism | 62 | Single | English |
| Shujata | 77 | Female | Bangladesh | Hinduism | 34 | Single | Bengali |
| Malini | 83 | Female | India | Hinduism | 10 | Single | Punjabi |
| Ravi | 72 | Male | India | Hinduism | 45 | Single | Hindi |
| Primary Questions | Probe |
|---|---|
| Have you ever disagreed with your healthcare provider and/or their decisions regarding your health? | If so, could you tell me how you dealt with that? |
| When you want to know more about your health, where do you go for information? | Family, internet, news, social media, talking with friends, relatives overseas, etc. |
| What role do family members play in your health care? | Do they join you for appointments? Drive you to appointments? Do they help with translation? Do they get medications for you? Prepare special meals? What does this support mean to you? |
| What would you like health care providers to know/understand about your culture? | How does that impact your health? |
Translation
Qualitative researchers have recognized the challenges inherent in interpreting and translating, particularly in multilingual (i.e., more than two languages) studies [101]. The translation of qualitative data encompasses not only the linguistic aspect but also the cultural context in which the data were gathered [102]. Given the complex and multilingual nature of this data collection, DC translated the interviews to English using the written translation approach outlined by [101]. The written translation approach, which was done soon after the interview, provided a more thorough translation ensuring that no details were overlooked. It also enabled our team to get closer to a lexical equivalent of the original phrasing [101]. Following the guidelines outlined by McKenna [103], DC also followed a forward translation method, in which the original source language was translated into the language in which the analysis and reporting will be conducted. After translating all transcripts into English, DC analyzed them as a comprehensive dataset [103]. DC also translated the interviews early in the research process to enable easy accessibility of the dataset for other members of the research team [104].
Data Analysis
The transcripts underwent a process of cleaning and anonymization before being uploaded into NVivo 12 for analysis. In addition to the transcripts, field notes and meeting notes were also included in the analysis software. Because of its theoretical flexibility and capacity to provide rich and detailed data without losing complexity, Braun and Clarke’s [105] thematic analysis was chosen as the analytical technique for analyzing the data associated with this research. The steps of Braun and Clarke's [105] thematic analysis technique include becoming acquainted with the data, developing preliminary codes, searching for themes, reviewing the topics, and identifying and labelling the themes. Interviews were transcribed verbatim and included detailed notes in the case of video-call interviews in order to preserve voice cues, tone of voice, and non-vocal signals and body language, such as facial expressions and hand gestures in order to help readers understand the data. Important information was noted both during transcription and in the form of fieldnotes during the interview. Our study involved a combination of two coding techniques. The first one is a priori coding [106], which was guided by the research questions and Lin’s [107] theoretical model (further described below) [108, 109]. The second one was emergent coding, which was used to identify significant themes raised in the interviews with participants [108–110]. After becoming familiar with the data, line-by-line coding was used to create initial codes. From the raw data, these codes were utilised to extract crucial information about the experiences and perspectives of the participants [105, 109]. We used an iterative process of proposing codes and then adding new codes as needed, through line-by-line analysis of the data. Please refer to Table 4 for an illustration of the evolving coding structure.
Theoretical models that inform analysis
This research is guided by the multilevel eco-social framework [107] to understand racialized immigrant older adults’ access to healthcare.
Multilevel Eco-Social Framework
The multilevel eco-social framework [107] expands on the socio-ecological model by emphasising the relationship between racialized older immigrants and healthcare access as a complex social process involving individual and contextual factors that exist between older immigrants’ health needs and healthcare providers [107]. In Bronfenbrenner's ecological theory, the process of racialized immigrants seeking health care involves an ecological transition and person-environment interaction across multi-layered overlapping systems where patients' health demands and health care services are integrated [111]. The multilevel eco-social framework furthers this conceptualization by noting the structural determinants specific to racialized and marginalized communities that shape the health-care experiences of older immigrants [107]. For instance, concerning the micro-level, Lin [107] highlights social and economic difficulties in a post-migration environment and socio-cultural variations in clinical settings. For the meso- and exo-system, Lin [107] highlights capital and labour as well as accessibility and sensitivity within healthcare organisations. Finally, immigration/social policies, as well as societal values/ideologies, are emphasised as macro-level, structural elements that influence all other levels.
Strategies for rigour
Strategies for rigour included reflexive memoing while coding [112]; team meetings throughout the data collection and analysis process [113]; team-based analysis with members representing different disciplines and cultural groups, including “insiders” and “outsiders” [114]; and the careful examination of outliers [115]. An individual conducting research is deemed an "insider" when they possess specific attributes and identity markers that align with those of the study participants. Conversely, a researcher is regarded as an "outsider" when they do not belong to the same groups as the participants [116, 117]. Outliers typically refer to participants and/or themes that are unique and distinct from the bulk of the data set [115].
Table 4 A priori & Emergent, Evolving Coding Structure
Through the analysis we identified four themes pertaining to patient engagement and healthcare decision-making of South Asian older adults in Canada: 1) the intricacies of language, 2) the role of gender and culture, 3) the role of family in healthcare decision-making, and 4) reverence or deference to the physician’s role. The first theme emphasized the nuanced nature of language and the potential for miscommunication to occur even when patients and healthcare providers are conversing in the same language. The results also highlighted that the extent of patient engagement and shared decision-making, along with the preference for family involvement, are greatly influenced by gender and cultural factors. Lastly, the final theme demonstrated that the position and perceptions of physicians play a significant role in shaping patient engagement, often resulting in patients being more inclined to agree with the healthcare providers' approach to care.
The intricacies of language
The participants in our study explained the importance of language when interacting with their healthcare providers, particularly highlighting language concordance, which refers to patients and healthcare providers being able to effectively communicate in a shared language [118]. Participants noted that the lack of linguistic concordance will have an especially negative impact on newer immigrants who are unfamiliar with the Canadian healthcare system, making healthcare navigation particularly challenging. Ashish, for instance, explained his perspective on the importance of language:
When our people come in from overseas, they have a language barrier. They can’t explain exactly what the problem is, and if the doctor does not understand the problem, how can he cure it?
- Ashish, male, 88 years old
On the other hand, Jamal noted another aspect of language barriers between physician and patient that is associated with technical terms and medical jargon:
See, so long as the doctor speaks in simple language, people will understand. The moment he tells you medical terms, they will find it difficult to digest.
- Jamal, male, 60 years old
The quote above highlights that there is more to language than having a conversation in a shared language. Similarly, Zarina explained from a different perspective how communication goes beyond language concordance:
I had to go to a specialist for my knee a few months ago. I have chronic knee pain for the past few years and doctor just gave me an appointment…he [doctor] said I should use medication and physiotherapy and maybe surgery. He said that a surgery would make his job easier {laughs}. I thought he was serious! I got worried, I said to myself “he is not a good doctor”. But my son explained after the appointment that he was trying to be funny. I do know English but I don’t get these things, these ‘mazaak’ (Urdu word for joking or sarcasm) - you know? I know now. But I am glad my son went with me. I thought I had to get a new specialist! {laughs}. Doctors back in Pakistan are more professional and to-the-point, you know?
- Zarina, female, 60 years old
Zarina’s comment emphasises the subtleties of language and how miscommunication can occur even when two individuals converse in the same language. Zarina, who has been in Canada for seventeen years and speaks very little English, also mentions her son's role in her engagement with her healthcare provider, demonstrating a way in which family members can be helpful beyond acting as translators.
The role of gender and culture
Gender played a significant role in the interviews with both male and female participants. Our study showed that the gender of the healthcare providers can impact the interaction between the care-provider and the care-recipient. For example, many participants stated that they would feel more at ease talking to a healthcare provider who is their own gender. However, the participants acknowledged that finding a physician of the same gender as them is not an aspect of their care they can control, particularly in Canada, where finding a physician is difficult in and of itself. Abhijeet elaborated on this point, explaining how the experience of seeking, or needing a physician of the same gender can differ in Canada compared to his country of origin:
I know my family members back in India, the ladies seek, and they go for a lady gynecologist, for example. Here, you don't have that option, you get a gynecologist, you get a gynecologist. So that might be a bit shocking to people that's coming from that country, Bangladesh or India. Over here some of my family members say, “oh my god, you know, I have a male doctor who is going to check me out”. Uncomfortableness is the word to use here, I guess. That’s how they feel.
- Abhijeet, male, 75 years old,
Abhijeet’s quote emphasises the perceived need for individuals who come to Canada to adjust to the differences in how the healthcare system operates there compared to their home countries.
Although the majority of participants who expressed their discomfort in discussing sensitive topics with healthcare providers of the opposite gender were female, it is worth noting that some male participants also highlighted this concern. Irfaan is one such example,
There are so many health issues that come up in my old age now. It’s uncomfortable to speak with female doctors about all of them. I would prefer a male doctor who I can talk about those more personal topics about my health. I don’t feel comfortable talking to female doctors about everything.
- Irfaan, male, 68 years old
While some participants have also stated they would prefer to have a physician who not only is the same gender as them but also shares the same ethnocultural background, others have stated the opposite as true for them. Beena, who has lived in Canada for the majority of her life, described her interactions with her family physician, a man from the same ethnocultural background as her, in the following way:
I think there are two sides to some people wanting a doctor from the same culture as them, because I've seen people saying they want to find a preferably South Asian doctor. I had a hard time finding a doctor. But then one of my friends said oh there was a doctor who was accepting new patients and the way she pronounced her name, I didn't realize it's an Indian gentleman. I was just so happy to get a doctor, and then figured out he is Indian later. And because of that I know him socially, he went to the parties around my neighbourhood. I thought to myself, if I'd known earlier and had a choice, I would choose a different doctor. For example, I didn’t know about pap-smears, and it was not comfortable talking to him about it, like he is male and also Indian. He was also friends with my mom. I felt like if I left him to find another doctor it would be a difficult situation, you know, socially. I never had the courage to leave him. But then I found out he was planning to retire, so I was very happy!
- Beena, female, 73 years old
Beena’s quotes highlight that having a healthcare provider from the same culture as themselves is not inherently positive to their healthcare experience. Beena further discusses how an individual's upbringing and education might influence how they interact with their healthcare providers:
If it's like, a doctor of the opposite gender, then it can be a little bit more uncomfortable at times, especially if you come from like, more conservative, cultural background. That’s exactly my story, right? Education and upbringing matter I think, since I was born and raised in India, I am still following those norms and rules here in Canada. But since I received my higher education here, I am more adjusted to how Canadians work. It doesn’t bother the same way anymore. But, I do know that a lot of people do want to see doctors from the same gender.
- Beena, female, 73 years old
Beena's comment above exemplifies how the intersection of culture and gender can influence the healthcare experience of older adults in Canada. Beena highlighted that in her community, women must adhere to certain levels of social restrictiveness as well as certain "sociocultural rules of interaction," when communicating with men. Beena and several other female participants noted that the stigma and societal restrictions stemmed from their cultural upbringing, which is why many of them state that they would prefer a female doctor. In this way, Beena states that her approaches to engagement are rooted in her cultural upbringing, while education as well as time spent in Canada impacts how those approaches to healthcare engagement and decision-making evolve over time.
The role of family in healthcare decision-making
The importance of family members’ engagement in the process of the participants’ healthcare decision-making was a prominent theme. Aaron explains the role his children play when it comes to making a decision regarding his health:
I expect my children to weigh in with their opinion. When we are older, they are the ones who will take care of me and my wife, so their input now is important to us.
- Aaron, male, 75 years old
According to Aaron, the children's input is important because they are expected to be Aron’s caregivers in the future. Similarly, Ananya, an older adult who also acts as a caregiver to her father-in-law explained how decisions are made in their household:
Say for example, there was this decision about adding a new medication, because my father-in-law has a prostate condition. So, we discussed with him, but he usually leaves the decision to my husband and myself. So, we decide that it would be a better option, because surgery is not an option for him at this age. So, we decided to go this route and so most of the decisions are done like that... Even though we asked him, we discuss with him, but he usually leaves it to us.
- Ananya, female, 61 years old
Ananya’s quote explains that not only does her father-in-law involve her and her husband in the decision-making process, but she leaves the decision up to them. On the other hand, Shalini explains that she consults her spouse when it comes to making a decision, but not her children:
After the doctor, I will talk to my husband about it. After we discuss it, I may ask my friend who is a doctor in India about it. But usually just my husband and I make the decision together. I don’t bother my children with it, they have their own problems.
- Shalini, female, 67
Other participants in our study, particularly longer-term immigrants and male participants, on the other hand, stated that their families were not as involved in their healthcare decision-making, and that they made their own decisions, independently, based on their physicians' medical advice.
Reverence or deference to the physicians’ role
Most participants in our study expressed satisfaction with their care, good experiences with their family doctors, and trust in the Canadian healthcare system. They did not, however, report being actively engaged in their own care. When questioned about her approach and process for making healthcare decisions, Malini expressed,
Usually, I will just do as the doctor says. Sometimes I will consult my husband if it’s a big issue – I had to do a small surgery a few years back, so my husband and children came with me to discuss it with the doctor. But I tend to be an easy-going person. The doctor usually gives prescription to buy medication for something and I’ll just go and get it.
- Malini, female, 83 years old
Regarding instances about disagreeing with their healthcare provider, a frequent response echoed Malini's comments about being laid-back and “easy-going”. Participants indicated that they entrusted decision-making authority to the doctors and expressed agreement with their decisions. When inquired about the reasons behind their tendency to agree with their care provider, Aarini stated:
I tend to agree with the doctor because I feel that each one has his or her own expertise. I’m not a doctor and I don’t have that knowledge. So I let them do what needs to be done.
- Aarini, female, 62 years old
As seen in the above quote, a common explanation provided by participants for their inclination to agree with the doctor was owing to the doctor's medical experience and expertise. However, some participants, such as Rajib, discussed additional factors that may be influencing the dynamics between physicians and patients:
I am not a shy person so I will voice my opinion if I think the doctor is doing something wrong. But for immigrant populations, there is a power dynamic where if the doctor is white and the patient is not, it can be harder to disagree.
- Rajib, male, 74 years old
Rajib’s quote highlights two key factors that may influence the interaction between the care provider and the care recipient. Firstly, the quote highlights that a patient’s approach and personal characteristics can be a factor that impacts the care they receive. Secondly, Rajib also draws attention to the significance of both the patient's and the physician's identity, and how it can influence the extent to which a patient expresses disagreement with the healthcare provider. This, in turn, may restrict the patient’s level of engagement in their own care. Another participant, Tarala, explains the influences which led her to align with her doctor's viewpoint,
“In our culture and Hindu scriptures, for example, a physician is seen as God. And who would question God?”
- Tarala, female, 78 years old
Other participants in the study also raised the perspective that, based on their religious or cultural teachings, care providers are regarded with a status akin to "God". Consequently, it can be deemed uncomfortable, disrespectful, or impolite to express disagreement with them. While some participants referred to the role of a “healer” as being important in religious scripture, most participants referred specifically to “doctors” or “physicians” being given higher importance over other healthcare professionals.
The significance of language in society, and thus in healthcare, cannot be overstated [119]. Several participants highlighted the need to know the language spoken by the care-provider (i.e., English) in order to explain their existing medical issues. Participants, however, emphasised that language often goes beyond simply knowing the words. Language serves as a vehicle for social and cultural expression as a way of conveying understandings and assumptions held by groups [120]. Similarly, language is a means of communicating one's identity and representing one's sense of self [121]. Linguists classify language competency into four categories: grammatical, discourse, sociolinguistic, and strategic [122,123]. The sociolinguistic category is especially relevant in healthcare providers' interactions and engagement with their linguistically diverse patient populations. The sociolinguistic category refers to the capacity to communicate and negotiate word and phrase meanings in terms of the culture in which the language is used, incorporating knowledge of cultural norms into communication processes [121,123]. An example of this in our study was seen through Zarina’s interaction with her specialist. Understanding the sociolinguistic category may help explain why language and communication are not always synonymous, and why knowing what is said in English (which is often used as a marker for language concordance) does not always imply that the care-provider and recipient are communicating. Several studies report the impact of gender, class, and education on the sociolinguistic understanding of language [124–127]. While sociolinguistics is often taken into account for cross-cultural research and communication between researcher and participant, it is often overlooked in the interaction between healthcare providers and patients [121,128].
Studies have also found that language barriers can impede access to health care and challenges related to navigating the complex system of care in Canada [129–131]. Participants in our study expressed similar concerns, indicating that if the doctor does not understand what is being said, they will be unable to help their patients. However, as pointed out by Schwei and colleagues [132], researchers should start concentrating their efforts on understanding how language concordance affects patient outcomes and their healthcare experiences rather than just stating that language barriers exist. Previous studies have indicated that patients generally perceive language concordance and ethnic-matching between doctors and patients as beneficial [63,133–135]. For instance, one study found that Black participants who had Black doctors and Hispanic patients who had Hispanic physicians were more likely to express high satisfaction with their overall healthcare experience and more inclined to rate their physicians as excellent [134]. However, contrary to previous findings, our research revealed that, while having a healthcare provider who speaks the same language and belongs to the same ethnocultural background as the patient has advantages, especially for newer immigrants who often face language barriers, there are some drawbacks. Participants of this study emphasised that linguistic concordance sometimes means that the physician is a member of their community social circles, which presents some challenges, such as discussing personal matters. For instance, one participant, Beena, noted that because her family physician, who spoke Hindi (her language spoken at home), was frequently invited to the same gatherings and functions in their community, she found it challenging to interact with her doctor in a social, in-formal setting while simultaneously still needing to discuss person health concerns such as gynaecological issues. Quotes from participants, such as Beena, highlight that speaking with a male healthcare provider from the same ethnocultural background requires adherence to certain sociocultural rules which may impede open communication. Our study, therefore, shows that healthcare experiences can be “gendered”. This is consistent with previous research, such as that of Pittman [136], which shows that gender-specific social interactions between patients and providers might have an impact on quality of care and health outcomes. Other studies describe comparable concerns in racialized immigrant populations in terms of stigma. For example, one study performed by Kingori et al. [137] examined the stigma associated with racialized women's sexual health in Somali communities in the United States. While their research focused on younger women, they also underlined the prevalence of social restrictions that are exclusive to women, which are rooted in religious and cultural norms of society [137]. Lin's [107] multi-level eco-social framework emphasizes the significance of language as a factor to be taken into account in the patient-provider dyad interactions. Consistent with our research, the multi-level eco-social model highlights the importance of communication stressing that within the meso-system of patient-clinician dyads, difficulties arising from language and cultural barriers can result in communication issues, such as the misinterpretation of symptoms, which may then lead to reduced access to healthcare services [107].
Patient engagement is currently regarded as a key element of high-quality healthcare service provision. Over the last few decades, a patient-centered care model that aims to tailor care to each patient's needs, values, and experiences has evolved from the paternalistic approach to healthcare, where healthcare providers make all the decisions with the patient having little or no involvement in their own care [138–140]. The majority of patient engagement literature focuses primarily on the involvement of the patients [141]. However, our findings underline the importance of family members, particularly spouses and children, in the patient engagement process, especially pertaining to healthcare decision-making. Participants explained that while they maintained that the physician is the medical expert, they closely incorporate their family’s input when it comes to making a decision about their health. Our findings shed light on the collectivist nature of certain racialized immigrant communities reported in other studies [142–144]. According to Markus & Kitayama [145], individuals' experiences, emotions, and motivations are influenced by the significantly varied constructs of the "self" and "others" that are frequently used across different cultures. In contrast to those in individualist societies, people in collectivist cultures, such as South Asian communities, internalise the expectations of their friends and family. As a result, in collectivist societies as opposed to individualist cultures, people's assessments of their level of life satisfaction and experiences seem to be more heavily influenced by their familial expectations [145]. This was consistent with our findings where families play a prominent role in the healthcare experiences of South Asian older adults. Therefore, our findings aligned with Triandis' [146] individualism-collectivism theory, which states that collectivists are a group of people who see themselves primarily as components of a larger whole, such as a family, and thus are influenced by the norms and obligations established by the collective unit. On the other hand, some participants who had come to Canada considerably earlier, tended to approach healthcare decision-making more independently. Some of them also stated that, while they consider their family's thoughts, the final decision about their health was their own. Because they have spent the great bulk of their lives in Canada, one explanation for this would be that they have "assimilated" or acculturated into a more “Westernised” culture over time, adopting health behaviours that are more in line with an individualist society than a collectivist one [146]. As such, our findings show that patient engagement is not always a dyadic exchange, but rather a dynamic, triadic, process between the care-provider, the care-recipient, and their families. Our study's findings regarding the dynamic engagement process aligns with a perspective that somewhat differs from Lin's [107] model. Lin's [107] multi-level eco-social framework incorporates family through the concept of the "patient-caregiver dyad”. Contrary to the model, we found that the "patient-caregiver dyad" and "patient-provider dyad" interactions are not distinct and separate. In our research, we emphasize that this process often occurs as a "patient-caregiver-provider" triad, as is evident with South Asian participants in our study.
French philosopher Voltaire once expressed his admiration for physicians, stating “those who are occupied in the restoration of health to others, by the joint exertion of skill and humanity, are above all the great of the earth” [147]. He even attributed a divine quality to their work, asserting that the ability to preserve and renew life is almost as noble as the act of creation itself [148]. In a 1983 article, author Brian Zack compares a physician's role to that of a mechanic, emphasising that the physician's superiority is due to tasks that require "a higher intellectual capacity or greater professional skill" [149], and that the key difference between the two professions is that for a physician, the "dysfunctional machine is the client" [149]. Putting aside the unfortunate perception of patients as "dysfunctional machines" that persists to some extent even today, these adages highlight the prominent position physicians hold in society. Historically, several cultures revered physicians as being "second to God" and typecasting them to have Godlike attributes due to stereotypes of them being intelligent and knowledgeable [150,151]. Our study highlighted that this status and perceptions of doctors can influence patients by shaping their tendency of conformance. Participants in our study, particularly those with a Hindu background, made references to the notion that they felt compelled to agree with the doctor rather than express their worries because of their upbringing, which taught them to treat doctors with the same respect they would show to God. Our findings indicate that patients with such attitudes are more likely to exhibit a greater inclination to conform to the decisions made by physicians regarding their health and well-being, which may limit their engagement in their care and their desire to involve their family in the process. Similar findings have been documented in previous studies exploring cultures outside of South Asia. For instance, in their study looking at family engagement in medical decision-making, Alden et al. [66] found that South Korean patients tended to view shared decision-making as acceptable only when their doctor actively encouraged it, but not when there is no encouragement from the physician. The authors hypothesize that this could be attributed to South Korean culture’s strong emphasis on the social norms of conformance [66]. Specific to newer immigrants, Hasnain and colleagues [152] suggest the notion that immigrants who have not fully acculturated into healthcare systems in the Global North, which prioritize patient autonomy, are more likely to show greater reverence or deference towards physicians compared to those who have. Similarly, Cervantes-Ortega et al. [18]reports that in their study, Latina women with lower levels of acculturation exhibited increased appreciation for any form of care they receive, leading to higher ratings of quality of care, and held providers in higher regards and esteem than those who have had more opportunities to acculturate. They also state that longer-term immigrants who have had time and opportunity to integrate into the healthcare systems of the Global North have higher expectations of care than newer immigrants [18]. However, these finding contrast with the findings of our study, because participants in our study who are long-term residents of Canada also report having reverence and deference towards their physicians. Although the multi-level eco-social model includes the "patient-provider" and "patient-caregiver" dyad within its concentric circles [107], our paper contributes to this model by specifically examining healthcare decision-making, which represents a specific form of engagement. In addition to contributing to the understanding of the "patient-provider dyad" in Lin's [107] model, our paper centers on factors that influence this interaction, including the patient's perception of the physician's status and the influence of gender and culture, specifically.
Implications for Practice & Policy Considerations
As the value of patient-centered care becomes more widely recognised around the world, particularly in multicultural migrant-receiving countries, research studies such as ours will improve understanding of cross-cultural similarities and differences in approaches to patient engagement and shared decision-making [153–157]. Recognizing differences in cultural perspectives among racialized immigrant patients, as well as their preferences for how they want to be involved in their own care and the factors that influence provider-patient interactions, can provide healthcare providers with valuable insights [158,159]. Understanding such nuances that exist among patient populations, for instance, can assist them in avoiding reliance on cultural stereotypes when engaging with patients and their families [160]. Consistent with prior research, our study reinforces the notion that involving patients in their healthcare is not a simple matter of associating specific nationalities or cultural backgrounds with predetermined beliefs and norms [161]. Given the contextual nature of the experiences of migration experiences and given the vast societal and cultural differences that exist on top of specific lived experiences of some subgroups and not others, we must exercise caution before embracing generalizations without considering the specific circumstances [162]. Several studies have emphasized the significance of clinicians proactively examining individual cultural preferences in medical settings, especially regarding patient and family preferences for decision-making and information regarding their diagnosis and prognosis [32,51,64,163]. Similarly, our findings also emphasize the need to tailor care delivery for racialized immigrant older adults and for effective communication between clinicians and patients, considering their specific linguistic, cultural, and spiritual needs and values. Policy and organizational mandates as well as training programs focused on culturally sensitive care must emphasize the significance of being aware of potential normative variations when considering patients as unique individuals with diverse preferences for patient and family engagement in healthcare decision-making [164,165].
The findings of our study have significant implications for the development of linguistically and culturally sensitive/aligned tools, resources, or recommendations to support engagement of racialized immigrant older adults and their families in managing their care. Similar to the diabetes management tools suggested by Chun et al. [166] for the Chinese communities, we recommend creating informational resources in various South Asian languages that cater to the immigrant community, particularly newer immigrants with language barriers. An example of an informational resource could be directories designed to assist older adults in navigating the healthcare system in Canada. These directories could provide information on the locations of various healthcare settings (e.g., walk-in clinics, testing centres, hospitals) in a particular region, as well as who or which organizations to approach for additional healthcare-related information. For example, the directories could offer guidance on how to find a family doctor in the patients’ region or providing the guidelines regarding instances when it may be appropriate to visit a pharmacist instead of a physician. Our study also helps identify barriers that prevent immigrants from participating in healthcare decision-making. Per our suggestions, policies can emphasise the promotion of inclusive healthcare practises that enable immigrant patients' active involvement in decision-making. Examples of these practises include shared decision-making models, instructional materials that are relevant for their culture, and family or community support networks' involvement [167]. Additionally, we suggest avoiding the assumption that cultural competence in healthcare is automatically achieved by having ethnic or language concordance between healthcare providers and patients. Therefore, as echoed by Engstrom et al. [168] special attention is warranted for training of bilingual and ethnically-matched healthcare staff with navigating the interactions between care providers and recipients influenced by cultural and social norms. Regarding the role of family in the care journey, it is important for healthcare providers to regularly assess the shifts in patients' expectations, responsibilities, and family support as a routine part of care provisions. We also recommend creating a communication training model that is appropriate for racialized immigrant populations, such as for South Asian communities [169]. Instead of relying on a Eurocentric communications guideline, a culturally tailored communication skills model that aligns with the individuals in the specific culture can be more advantageous in training healthcare providers to effectively communicate with patients from diverse backgrounds [170]. Lastly, providers must be aware of and be attuned to the potential inclination within certain communities or among newly arrived immigrants towards reverence and deference. Health care providers should proactively create an environment that encourages alternative perspectives and make space for other ways of thinking. For instance, if a physician knows that a patient is likely to agree with anything they suggest, they should make an active and conscious effort to present multiple options and provide a thorough review of the advantages and disadvantages of each option.
Limitations
Our study contributes to the existing, but limited, research on patient engagement and shared decision-making, concerning not only racialized immigrant patients but also older adults. However, our qualitative study has some limitations. First, our sample of participants was geographically limited because we recruited participants from Southern Ontario, focusing primarily on urban cities. This also resulted in the possible exclusion of racialized immigrant older adults residing in rural areas who may or may not have had different healthcare experiences. Secondly, although we conducted comprehensive interviews with older adults to explore their preferences and perspectives on patient engagement, shared decision-making, and family involvement, our study would benefit from additional insights that might be gained by also interviewing family caregivers about their role in providing care. Similarly, it would have been beneficial to interview healthcare providers regarding their firsthand experiences in engaging racialized immigrant older adults and their families in care, providing insights from the perspective of care providers. Thirdly, this study focused on only on the experiences and perspectives of the South Asian immigrant communities in Canada. Subsequent research should investigate the viewpoints and experiences of other communities within the Canadian demographic landscape, such as the Chinese community and the Arabic-speaking community. Fourthly, we had a large number of participants who were highly educated, came from higher socioeconomic backgrounds, and had high English language proficiency. Although our sample aligns with the migration patterns of South Asian older adults in Canada (i.e., many South Asian families migrated to Canada during the mid-20th century and are now older adults, as reported by the Government of Canada [171]), it is important to understand and specifically study the experiences of recent immigrants from less privileged socioeconomic backgrounds and those for whom English is a second language. Lastly, it is important for studies of this kind to specifically address refugees who have migrated to Canada, distinguishing between immigrants and refugees due to their significantly distinct experiences of migration.
This paper examines South Asian-born older adults’ experiences and approaches to patient engagement, collaborative healthcare decision-making, and the factors that influence patient engagement and healthcare decision-making within this population. The study's contribution includes a thorough understanding of the importance of family, gender, and culture in South Asian older adults’ healthcare experiences as well as how communication extends beyond language. The findings also show that patients’ perceptions of physicians and their status can influence their approach to patient engagement. This paper challenges previous research that assumes language concordance as well as ethnic matching between patients and healthcare providers are unanimously beneficial.
Ethics approval and consent to participate
Ethics clearance (human ethics) was obtained through the University of Waterloo Office of Research Ethics (ORE #43297). Consent to participation was obtained from all participants involved prior to data collection.
Funding
This work was supported by the Canadian Institutes of Health Research (grant number: 452873).
Consent for publication
Approved by CIHR and all participants involved.
Availability of data and materials
Due to the nature of the research and ethical constraints, supporting data is not available.
Competing interests
The authors report no conflicts of interest.
Authors' contributions
The authors confirm their contribution to the paper as follows: study conception and design: DC, CT, PS; data collection: DC; analysis and interpretation of results: DC, CT, PS, EN, KL. Author; draft manuscript preparation: DC. All authors reviewed the results and approved the final version of the manuscript.
Acknowledgements
We sincerely thank the research participants who generously shared their experiences and perspectives with us. This work was supported by the Canadian Institutes of Health Research (grant number: 452873) and the International Doctoral Scholarship Award granted to DC.
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No competing interests reported.