How do South Asian seniors in a large Canadian city perceive long-term care?

Abstract

Objective

To understand how community-dwelling South Asian older adults understand and envision long-term care (LTC).

Design

Descriptive qualitative study.

Setting

The Region of Waterloo in Ontario.

Participants

Participants included 3 key informants (geriatrician, social worker, and medical translator, all South Asian), 1 family caregiver, and 15 community-dwelling South Asian adults aged 65 and older.

Methods

In-depth interviews and focus groups were recorded, transcribed verbatim, and analyzed using a framework analysis approach.

Main findings

High-level themes included the emotional impacts of failure to provide culturally competent care, such as fear and isolation; a desire for a model of culturally competent care with an emphasis on food and language; and the need for LTC to be more integrated with the broader community and connected to families.

Conclusion

As the delivery of LTC is rethought in this country, there is the potential to deliver on the promise of culturally competent care for this growing population. These findings are among the first to communicate the LTC care needs of South Asian older adults in their own words.

Recent demographic shifts have changed the composition of Canada’s older population to become more ethnically and linguistically diverse, with more people from the Middle East and other parts of Asia; Latin America; Africa; and the Caribbean.¹ This is particularly evident in Ontario, where more than half of immigrants to Canada settle and visible minorities are the fastest growing segment of the population 65 years and older.² Ontario’s racialized older adult population increased by 35% between 2006 and 2016, as opposed to 9% for those who are not racialized, while the racialized older adult population in Toronto increased 131% over this period.² Racialized and immigrant older adults who speak neither English nor French in Canada report a range of unmet care needs.^3,4 Much as in the United States,^5,6 racialized Canadians have traditionally regarded long-term care (LTC) as a last resort, but it appears that there is increasing demand for ethnicity-focused facilities.

Growing desire for ethnoculturally specific LTC

In Ontario, more than 50 LTC facilities cater to various ethnic groups, most in the greater Toronto area, where 33 of 200 LTC homes had a cultural or religious designation as of 2019.^7,8 In addition to limited care options, long wait times further complicate racialized older adults’ access to LTC: controlling for medical condition, wait times for admission to ethnospecific homes are, on average, 3 times longer than wait times for mainstream homes.⁴ Some Chinese care homes in Ontario report waits of 2 to 6 years.⁹ Such wait lists point to a growing desire and need for culturally specific LTC in Ontario. Even though South Asians now compose the largest proportion of Ontario’s visible minority population, they currently have no culturally specific nursing homes.¹⁰

Ontario’s Fixing Long-Term Care Act states that every resident has the right to a “plan of care [that] covers all aspects of care, including medical, nursing, personal support, mental health, nutritional, dietary, recreational, social, palliative, restorative, religious and spiritual care.”¹¹ For ethnoculturally and linguistically diverse older adults, many of these needs could be more adequately met in facilities that recognize and accommodate their cultures.

Benefits of ethnoculturally specific LTC

Internationally, there are recognized benefits to ethnoculturally specific LTC.^12,13 A 2015 systematic review by Wohlberg¹⁴ demonstrated clear advantages for residents’ health outcomes and quality of life. Specific merits include enhanced trust and communication with providers,¹⁵ lower use of antipsychotic medications, more accurate diagnoses, and improved family satisfaction for individuals living with dementia.^16,17

Providing culturally appropriate care

A key concept related to providing appropriate care for ethnoculturally diverse groups of patients is cultural competence, which has been linked to improved health outcomes^18,19 across all levels and types of care.²⁰ Canadian practitioners have long called for culturally competent care.^21,22 We used the following definition of culturally competent care in this study:

At the system level, cultural competence refers to the demonstrated capacity of an organization to work effectively with culturally diverse populations, through explicit integration of cultural diversity into all aspects of its organizational values, structures, policies and practices.²³

More recently, LTC providers and organizations in Ontario have also emphasized the need for greater levels of cultural competence in their sector.^24,25 The Ontario Centres for Learning, Research and Innovation in Long-Term Care’s Embracing Diversity Toolkit²⁵ helps organizations identify and assess their levels of cultural competence. There is a growing interest and recognition that both ethnoculturally specific and more mainstream facilities must more clearly understand how and to what extent they are meeting the needs of racialized residents.

Objective

We conducted this study in the Region of Waterloo, Ontario, in summer 2020 to better understand the needs of South Asian seniors who might enter LTC facilities, as well as barriers perceived in mainstream LTC homes.

METHODS

Drawing on a mixture of focus groups and individual interviews, this qualitative descriptive study²⁶ aimed to examine South Asian older adults’ perspectives on LTC in the Region of Waterloo. There, South Asians represent the largest racialized group, with a population of 26,600 and the number who self-described more specifically as East Indian increasing by 44% between 2006 and 2016^27,28; however, the region currently has no specialized LTC or retirement communities for this group.

Eligibility and recruitment

We recruited community-dwelling older adults (aged ≥65) who identified as South Asian, who lived in the region, and who were able to provide informed consent for an English-language study. To gain a deeper perspective of those involved in LTC decisions and transitions, we also recruited a small sample of health care providers (HCPs). We used a purposive sampling strategy²⁹ in which we worked with stakeholders from several local organizations to reach potential participants, including those who could speak about LTC experiences on behalf of their community.

Data collection and analysis

To develop and later refine the interview guide (sample questions are presented in Box 1), we drew on our prior experience interviewing immigrant older adults, consulted with a PhD-trained colleague who had previously conducted research on LTC for ethnically and culturally diverse residents, and engaged in a series of key-informant interviews (this research is ongoing) with executives and directors of culturally specific LTC homes in Ontario. Ethics approval for this study was granted by the Hamilton Integrated Research Ethics Board.

Box 1. Sample interview guide questions.

• When I say long-term care, what comes to mind?

• Can you describe for me your personal experiences of long-term care (what you saw, heard, experienced, liked, and disliked)?

• Under what circumstances would you consider moving to one of these facilities? How would you feel about it?

• If you could create a long-term care facility tailored to the needs of South Asian older adults, what would it be like?

• We have heard a lot about the importance of food. Can you please explain to me why it is so important?

• What sorts of support do you think you will need to stay living in your own home as you get older?

Four focus groups (N=16 participants), including 15 South Asian older adults and 1 family caregiver (to assist a participant who had dementia), and 3 key-informant interviews with South Asian HCPs were conducted. All participants were first-generation immigrants to Canada who had lived in Canada for at least 2 decades and included 8 men and 11 women. The older adult participants ranged in age from 66 to 85 years, spoke English, and had access to a computer to do an online interview. Most were highly educated and of higher socioeconomic status, and they included individuals from North and South India and the South Asian diaspora from Africa and the Caribbean. The HCPs included a social worker, a geriatrician, and a medical translator.

All data were collected in English, online or via the telephone, by one of the authors (C.E.T.). Interviews and focus groups lasted approximately 1 hour each (minimum of 54 minutes and maximum of 74 minutes) and were digitally recorded and processed through transcription software (Otter.ai). We concurred that we reached theoretical saturation³⁰ for this type of participant, with the limitations of this sample described in the discussion.

Transcripts of the interviews and focus group discussions, in addition to field notes, were reviewed and anonymized and then uploaded to NVivo 12 for analysis. We engaged in team-based framework analysis³¹ to identify silent themes. Strategies for rigour included team-based analysis,³² memoing during the analysis,³³ and the thoughtful examination of outliers.³⁴

FINDINGS

In addition to describing what culturally competent LTC facilities should look like, participants also highlighted the profound impact of non–culturally competent care. Our findings are described below, with additional detail in Table 1.

Table 1.

Features of culturally competent care for South Asian older adults

FEATURE	DESCRIPTION	SAMPLE QUOTE
Food	Participants described their wishes for familiar foods. They emphasized that they did not necessarily expect to be served South Asian foods daily but would appreciate if these foods were part of the regular menu in facilities. All participants noted that many South Asian residents have specific food needs and preferences (eg, vegetarian, halal)	“The other thing is that once in a while, if the cultural food is out … if once in a while they get the culture food that will make them feel safe” (Female participant, age 77) “That’s where, you know, having the flexibility to have different [menus] and different taste, and spaces [matters]. It doesn’t all have to be in one kitchen, right. Like, if you have 200 residents, like, is there … more ability to adapt and have 3 types of breakfasts available in the morning or even when it comes to food, like having vegetarian or having no pork and, you know, how are you going to balance all the different customs and traditions? So, that’s where, you know, having one or two small kitchens would be a solution” (Male key informant, age 49)
Language and communication	Participants recognized the difficulties present when residents and staff do not speak the same languages, or when residents cannot communicate with one another, which could further isolate a racialized older adult. Culturally competent facilities should provide language support through staff and volunteers, wherever possible	“[When] different people speak [the] same language and the residents are of [the] same culture, that becomes [a] little easier. There was a lady who could not chew the hard cereal. She couldn’t explain to the person who was in the kitchen that she wants only Rice Krispies, not the hard ones. So, it was frustration on both sides” (Female participant, age 80)
South Asian-specific wings and integration	Participants emphasized that although they did not want “South Asian-only” facilities, they envisioned places that offered South Asian wings or clusters of residents, where they could socialize, connect, and have some of their needs (eg, food, language, culture) more readily met	“That is one of the most beautiful suggestions, quite honestly— having a wing, no matter [whether] it’s 10 beds, 5 beds, 20 beds, whatever it is, how small it may be [for South Asian residents]” (Male participant, age 85) “If they can do it, [it] would be really nice to have separate wings. Like, they have a common area, they can mix everybody together. But still they have a separate wing.… They can have it for, like, people coming from different backgrounds” (Female participant, age 72)
Art, film, music, and design	Many participants noted that culturally familiar LTC facilities should offer South Asian films, play South Asian music (especially older, nostalgic music), and integrate South Asian art and decor into the design of the facilities. It was suggested that this would be both comforting and especially helpful for residents living with dementia	“And then for somebody like my mom with dementia, definitely a selection of South Asian music because as you guys both know, like, music is so key for dementia patients” (Male caregiver, age 45)
Cultural and religious festivals	Many participants noted that culturally familiar LTC facilities should recognize and celebrate major South Asian holidays, such as Diwali, in the same way that many mainstream facilities would celebrate, for example, Christmas. Participants emphasized that they would also be keen to learn about and celebrate festivals from other cultures	“The festivals, yeah, the biggest one, Diwali. So, whatever they are, they should know about that. The staff should know about that and celebrate that” (Female participant, age 77)
Staff training in cultural competence and representation	Participants noted that both front-line and administrative staff should receive formal cultural competency training when providing care to all racialized older adults. One focus group also emphasized the need for more diverse representation at the executive and managerial levels	“Give them sensitivity training…. No, I think the boards have to change. We need to have more diverse representation on boards. We’re still finding clutches of resistance … because they’re afraid of change. But I feel that it is already happening. We just need to accelerate that there are enough immigrants and visible minorities, maybe, not outside of the main centres, but there are enough for them to be able to take a role in boards. We don’t see them; we don’t even see women enough in boards” (Female participant, age 67)
Staff training and skills in person-centred care	In addition to culturally competent care, all participants discussed the importance of person-centred care, in which staff have the time, skills, and willingness to connect with residents in a way that meets not just their physical needs, but also their emotional and psychosocial needs. Participants acknowledged the great pressures and demands that staff face in LTC in these comments	“I think it would be really nice. In the whole day one person … I know, when you have a [lot of patients] … they are busy, I know they don’t have time to do anything. But even … for a few minutes, sit down, hold their hands and talk to them. That makes it really different” (Female participant, age 72)
Dementia care	Several participants highlighted the particular importance of culturally competent care for persons living with dementia, noting that many people with dementia lose second-language skills and would especially benefit from things such as familiar, older South Asian music	“I wonder if it happens to people when they get sick or something happens, and they forget about the other language and they speak their own language…. I think that can happen, especially if you’re experiencing any sort of dementia or memory loss” (Female participant, age 72)
Integration with the broader South Asian community	Participants emphasized the potential of connecting South Asian residents in LTC to the broader community. Participants discussed both the community going into the facilities to visit and support residents (eg, as volunteers) and bringing the residents out into the community (eg, to participate in South Asian festivals, view films)	“From our community, if we have a member in the long-term care … we do appoint somebody in our church, who can go and visit these peoples in the long-term care and sit with them, talk to them, you know, these are the volunteers. [The volunteer] sits with them talk to them and prays with them, you know, … to give them the morale boost through the prayers” (Male participant, age 85)

LTC—long-term care.

Fear and isolation: impact of non–culturally competent care

Participants, both older adults and HCPs, used the terms “shock,” “confusion,” and “fear of the unknown” to describe the process of South Asian older adults moving away from their homes, and in particular away from joint-family living situations, to a wholly unfamiliar LTC context. One participant (female key informant, age 77) who had volunteered with South Asian seniors in LTC for many years explained:

Some of them have gone and they still feel so lonely and … [with] the food and atmosphere.… [S]ometimes I go visit them, too, and they’re sitting by themselves. They become like a cocoon … it’s very sad.

I had my sister-in-law here, also in LTC. And they really look after her very well. But the only thing I found—like, she’s talking and she was very friendly with everybody, but somewhere I can see that still she is missing her own people.

Envisioning culturally competent care

Food. Participants emphasized that culturally familiar food provided not only sustenance, but also pleasure, and it improved digestion, comfort, and connection to the past. Although many recognized inherent challenges in doing so, participants stated that providing familiar food (staples such as naan, roti, rice, and lentils) was among the most important strategies to implement for health and a sense of inclusion. One participant noted, “Every person needs their own food, now and then. Even if they get once a week their food, then they are satisfied. [If not], they miss something in life.” (Female participant, age 80)

For many, careful vegetarian meal preparation was paramount.

Mixed-ethnicity facilities preferred. Participants emphasized that they did not wish to live in segregated “South Asian–only” facilities. They envisioned facilities where residents and staff from similar ethnocultural communities are clustered together for familiarity and a sense of community (eg, a wing for South Asian residents), but rejected ones isolated from other ethnicities and cultures: “No segregation. We don’t want to be labelled, right? We have to learn to assimilate. I do not want to be ‘Indian, Indian’ and I don’t want to be isolated from my Canadians.… Like, we have the best of both worlds.” (Female participant, age 74)

Integrating LTC with the broader South Asian community. A central theme in our interviews and focus groups was the importance of integrating LTC services and residents within the broader South Asian community, regularly connecting them to places of worship and creating opportunities to share culture, food, and celebrations by bringing in community members to LTC facilities. One participant explained:

Let’s go to the temple. Right, the worker can go with them. They have their life and they had the social connection, they have their spiritual connection … they come home happy. These are enhancing the quality of life, and it is culturally appropriate, as well. Getting them out of the home, going to the movies, a Hollywood movie, Bollywood movie. (Female participant, age 71)

Many South Asian older adults in Canada are part of large, intergenerational families and there are cultural expectations and norms that suggest adult children play an important role in caring for their elders. Integrating family members living in the community into LTC was especially important for participants. Families would like opportunities to stay engaged with older adults throughout transitions to LTC.

It’s kind of a dream scenario. To be able to have the children of the people in the home, to be there for the first week or two to help them on board. First, for dementia patients, like my mother … to have that bridge. (Male caregiver, age 45)

DISCUSSION

The COVID-19 crisis exposed fault lines in LTC.³⁵ Rethinking LTC will require accommodating the needs of Canada’s increasingly ethnoculturally diverse older adult population. Our findings on how to achieve this were largely consistent with the broader literature on the need for, benefits of, and design of culturally competent LTC. However, 2 further themes emerged, which have yet to be considered fully in this area of research: broader integration with the community and the value of mixed-ethnicity facilities.

Importance of ethnicity and culturally competent LTC

Ethnicity as a form of community or kinship, representing an extension of family and familiarity, often intensifies in old age.^36,37 This intensification is essential to understanding the value and need for culturally competent LTC. Research has shown that transitions to culturally or linguistically discordant LTC can result in language and communication issues, some with serious implications (eg, signing advance care directives without understanding them), loneliness, and isolation.^38,39 Such worries were echoed by our participants, many of whom emphasized the potential for isolation, confusion, loneliness, and fear upon a move to an LTC facility.

Participants’ repeated emphasis on food, in particular on the need for familiar South Asian foods, was notable. The 2015 scoping review by Wohlberg concluded that “providing the opportunity to request and practice one’s cultural eating patterns is fundamental to culturally congruent care … [and] validates a sense of belonging.”¹⁴ Studies in the United States have shown that providing culturally familiar foods can have a direct positive impact on quality of life and nutritional status for racialized residents.³⁸

Bridging the divide between LTC, families, and the community

Most Canada LTC facilities are neither designed nor equipped to meet the linguistic and nutritional needs of many older immigrant adults; consequently, family members often provide additional support through translation and meal provision.³⁹ Therefore, it is crucial that LTC staff members are sensitive to the unique cultural values of both residents and their families.^39-41 Participants in this study echoed this sentiment, noting that they wished to see greater collaboration and integration of families into the life and work of LTC. Participants also noted that culturally competent care could be supported by drawing on existing resources and strengths within their communities (eg, visiting temples, bringing in South Asian volunteers to share music, culture, festivals). Long-term care homes are often viewed as islands unto themselves,⁴² but participants saw opportunities to strengthen culturally competent care by working with local cultural communities.

Integration, not segregation

Distinct from the existing international literature,¹⁴ which has tended to emphasize culturally specific LTC homes, participants in this research were less interested in developing a South Asian–specific home. This could reflect the composition of participants, primarily longer-term immigrants with strong English language skills and a degree of acculturation. However, it will increasingly be longer-term immigrants who have been a part of Canadian society for decades who will be seeking such services.² Participants emphasized their desire to learn from and enjoy living in facilities with residents of diverse cultural backgrounds and rejected the notion of facilities that would isolate them from other cultures or the community. Our participants echoed the cautions of US investigators that ethnospecific LTC homes run the risk of increasing feelings of segregation.¹³ On the surface it may seem paradoxical that people wish to have ethnoculturally specific features (eg, food) in LTC, yet also wish to live in LTC facilities that are not exclusionary or segregated from Canada’s diverse society. Many older immigrants are highly adaptable individuals whose needs and preferences can and do adapt as they age in foreign lands, resulting in a blend of values and preferences that reflect their unique immigration trajectories.⁴³

Limitations and future research

We recognize that our study has a small sample size and is limited to English-speaking, longer-term immigrants who were connected to community groups from which we directly recruited participants. Our findings may not be generalizable to South Asian older adults in different settings or to newcomers. Our participants were chosen as community leaders, speaking on behalf of community needs and recognizing issues faced by family members, friends, and other members of their faith and communities. Such individuals are also more likely to choose LTC and retirement homes, particularly those facilities requiring substantial copayment. The inclusion of only English-speaking older adults is a serious limitation of our data. These interviews and focus groups allowed us to set the stage and successfully obtain funding to further explore these issues with a more diverse range of South Asian older adults. Canadian research with South Asian older adults has tended to focus on the experiences of those originally from North India.⁴⁴ Here we have included South Asian older adults from North and South India and the South Asian diasporas from Africa and the Caribbean, but our small sample of 19 does not represent the diversity of South Asian immigrant older adults in Canada. In the next phase of our research, we are interviewing South Asian older adults residing in Ontario in Bangla, Hindi, Punjabi, Tamil, Telugu, Urdu, and English. This larger sample and funding for translation and interpretation will not only allow us to reach those who could not participate in the present study, but also will allow us to employ a more intersectional lens⁴⁵ to explore issues of religion, spirituality, and social class more comprehensively. Future research should also probe issues related to racial trauma,⁴⁶ earned mistrust of the health care system,^47,48 and if and how these issues affect the LTC experience of racialized older adults.⁴⁹

Conclusion

Although practitioners and researchers have long lauded the principles of culturally competent care,^21,22 some large subgroups in need of care, such as South Asian older adults, have been almost entirely overlooked. As recent events have highlighted the need to profoundly rethink the delivery of LTC in this country,³⁵ we now have the potential to deliver on the promise of culturally competent care for this growing population. Our findings are among the first to communicate the LTC care needs of South Asian older adults expressly in their own words.

Editor’s key points

• Culturally sensitive care for older adults in Canada is lacking, with glaring oversights affecting large and growing populations including South Asians. The literature regarding the care-related desires of such populations is also sparse.

• The COVID-19 crisis exposed fault lines in long-term care (LTC). Rethinking LTC will require accommodating the needs of Canada’s increasingly ethnoculturally diverse older adult population. Many of these needs could be more adequately met in facilities that recognize and accommodate their cultures.

• Drawing on in-depth interviews with South Asian older adults and key informants, the study’s findings indicate a strong desire for such care to be integrated within the family and community at large, not to be segregated from other ethnic groups, and to have culturally familiar food and activities available.

Points de repère du rédacteur

• Il n’y a pas assez de soins adaptés à la culture pour les adultes plus âgés au Canada, et de grandes populations en croissance, y compris celle des Sud-Asiatiques, sont manifestement oubliées. De plus, les ouvrages concernant les souhaits de telles populations en matière de soins sont peu nombreux.

• La crise de la COVID-19 a mis en lumière les failles dans les soins de longue durée (SLD). La redéfinition des SLD demandera qu’on tienne compte des besoins d’une population d’adultes âgés de plus en plus diversifiée sur le plan ethnoculturel. Un grand nombre de ces besoins pourraient être satisfaits plus adéquatement dans des établissements qui reconnaissent leurs cultures et s’y adaptent.

• En se fondant sur des entrevues en profondeur avec des adultes sud-asiatiques plus âgés et des informateurs clés, les constatations de l’étude indiquent un fort désir que de tels soins soient intégrés au sein de la famille et de la communauté, sans être prodigués séparément d’autres groupes ethniques, et d’avoir une alimentation culturellement familière ainsi que des activités à leur disposition.