Background and Objectives
The number of older adults belonging to minority populations who require residential care is increasing. However, individuals belonging to minority populations often experience unmet health care needs (i.e., prescription medications, dental care, and higher incidence of unmanaged pain) and underutilization of health services (Shi & Stevens, Reference Shi and Stevens2005; Wu, Penning, & Schimmele, Reference Wu, Penning and Schimmele2005). In Canada, it has been observed that recent older immigrants use health services less than do long-standing residents, which is associated with social determinants of health such as discordant cultural expectations, financial restrictions, and linguistic diversity (Chaze, Thomson, George, & Guruge, Reference Chaze, Thomson, George and Guruge2015; Guruge, Thomson, & Seifi, Reference Guruge, Thomson and Seifi2015; Wang, Guruge, & Montana, Reference Wang, Guruge and Montana2019). In the context of a growing older adult immigrant population (Statistics Canada, 2021), it is unclear if the increasing demand for appropriate long-term care for our aging population is being met, particularly for a number of minority populations.
This review inspects health inequities experienced by individuals who identify with a minority population – recognizing there are complex geographic, political, and social factors that contribute to minority status, racial and socio-economic discrimination, and health care access. We also recognize that minority populations are not mutually exclusive. Individuals may identify with more than one group (Balsam, Molina, Beadnell, Simoni, & Walters, Reference Balsam, Molina, Beadnell, Simoni and Walters2011) and experience intersectionality: a cumulative marginalization effect imposed on individuals through the intersection of minority identities (Chan & Henesy, Reference Chan and Henesy2018; Viruell-Fuentes, Miranda, & Abdulrahim, Reference Viruell-Fuentes, Miranda and Abdulrahim2012). Compiling international literature on minority populations without content experts from each geographic and cultural setting is challenging, and may result in further discrepancies; therefore, we used existing definitions while recognizing their limitations. Because the definition of minority is specific to time and place, we used both the United Nations’ (UN) terminology (United Nations, 1992) – outlined in the Methods Section – and a literal interpretation of “minority” as meaning those identifying with characteristics not exemplified in the majority population.
There are a number of definitions for minorities depending on the use of the term. According to the Employment Equity Act in Canada, visible minorities are defined as "persons, other than Aboriginal peoples, who are non-Caucasian in race or non-white in colour" (Statistics Canada, 2015), and an immigrant is a “person has been granted the right to live in Canada permanently” (Statistics Canada, 2019). The terminology “sexual and gender minority” is used in literature (Mastroianni, Kahn, & Kass, Reference Mastroianni, Kahn and Kass2019; Wilson, Kortes-Miller, & Stinchcombe, Reference Wilson, Kortes-Miller and Stinchcombe2018) to characterize those who identify as lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2+). However, a notable paucity of literature remains on the health challenges specific to LGBTQ2+ populations (Wilson, Stinchcombe, Ismail, & Kortes-Miller, Reference Wilson, Stinchcombe, Ismail and Kortes-Miller2019). Our review aims to outline research on minority populations’ access to long-term residential care while acknowledging the complex historical, political, and geographic factors that are intrinsically tied to minority status.
Studying health inequalities among minority populations involves both accurate measures of health inequality and developing interventions that appropriately eliminate disparities (Jackson, Reference Jackson2005). Although evidence of health disparities within minority populations exist, a theoretical framework that addresses the complexity of minority status without reproducing patterns of “Othering” remains undefined (Torres, Reference Torres2019). In some jurisdictions, minority populations are shown to have longer wait times for ethno-specific care homes (Um, Reference Um2016). Negative outcomes such as lower satisfaction with quality of care, higher rates of pressure ulcers, and lower rates of diagnosis and treatment of depression have also been observed among minority groups in long-term care settings (Li et al., Reference Li, Harrington, Temkin-Greener, You, Cai and Cen2015). There is consolidation on the literature on health disparities for many minority populations (Ayhan et al., Reference Ayhan, Bilgin, Uluman, Sukut, Yilmaz and Buzlu2019; Mukadam, Cooper, & Livingston, Reference Mukadam, Cooper and Livingston2011; Rosenkrantz, Black, Abreu, Aleshire, & Fallin-Bennett, Reference Rosenkrantz, Black, Abreu, Aleshire and Fallin-Bennett2017; Wilson et al., Reference Wilson, Alam, Latif, Knighting, Williamson and Beaver2012). However, literature assessing long-term care access among older minority populations has not been consolidated. The objectives of this systematic review were to examine access to long-term care for minority populations and identify barriers or facilitators that influence their admission.
Research Design and Methods
We developed an a priori protocol and analysis plan registered with PROSPERO (removed for blinded review), and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Appendix 1).
Study Population
Our population of interest was older adults, (65 years of age and older), belonging to minority populations who may need or are considering entry into long-term care. For the purpose of this review, we defined “long-term care” as a residence providing 24-hour nursing care. In many jurisdictions and countries, these type of care settings may be known as “nursing home facilities”, “nursing homes or residences”, “skilled nursing facilities”, or “personal care homes”.
We recognize that the definition of “minority” is dependent on geographic location and cultural setting. For the purposes of this review, we followed the terminology of the UNs’ Declaration on the Rights of Persons Belonging to National or Ethnic, Religious and Linguistic Minorities, which defines minority groups “based on national or ethnic, cultural, religious and linguistic identity” for whom minority status is dependent on the cultural, geographic, and linguistic area within which each group lives (United Nations, 1992). We strove to be as inclusive as possible, selecting studies that looked at any minority group within the UN definition and included research on sexual and gender minorities, given that there is a lack of research on these individuals and communities (Wilson et al., Reference Wilson, Stinchcombe, Ismail and Kortes-Miller2019). We are aware that some terminology used in original manuscripts is no longer acceptable, so we added the term “[sic]” to indicate that the choice of wording was from the original publication and not necessarily the terminology that the authors of this article would choose. We also used “[sic]” when we felt that there was lack of clarity or variety in the definition of the term (e.g. “others”).
Eligibility Criteria
Studies published between 2000 and 2021 in English or French were considered. We included quantitative and qualitative studies that: (1) examined admission to long-term residential care or the influence of minority status on admission, or (2) explored barriers to and facilitators of admission for minority populations. An age restriction of 65 or older was applied to the first group; we did not apply an age restriction for studies on preferences, including studies that assessed perceptions of participants who would be using homes in the future. We included studies of both caregiver and patient perspectives. We also reported factors influencing residence or prevalence data only from those studies evaluating factors for admission.
Search Strategy
We consulted with a health literature search specialist and conducted a search for relevant articles published between January 2000 and January 2021 from 10 databases. The full search strategy is available in Appendix 2. Articles selected for full-text screening were reviewed to hand search all references, and any relevant non-duplicate articles were individually searched, downloaded, and screened for eligibility.
Study Screening and Data Extraction
Retrieved articles were managed in a Zotero library (version X6). Team members screened a sample of 30 articles to ensure inter-rater reliability. Titles and abstracts were independently screened by at least two researchers for relevance. After reaching consensus, full-text articles were obtained and uploaded to Mendeley. Two members of the team independently reviewed each article. Disagreements were resolved through discussion and input of a third team member when necessary. Subsequently, one team member extracted data from all relevant articles using a form specifically developed and pre-tested for the study (Appendices 3 and 4). Another team member validated the data extraction.
Methodological Quality
Quantitative cohort studies, qualitative studies, and the systematic review were all assessed for methodological quality using the Critical Appraisal Skills Programme (CASP) checklists according to study design. Cross-sectional studies were evaluated using the National Heart, Lung, and Blood Institute’s quality assessment tool for observational cohort and cross-sectional studies. Consistent with previous literature (Maass, Roorda, Berendsen, Verhaak, & De Bock, Reference Maass, Roorda, Berendsen, Verhaak and De Bock2015), all quality assessment results were calculated into a percentage-based score and categorised as poor (0–25%), fair (25–50%), good (50–75%), or excellent (75–10%) to demonstrate study quality. Quality assessment scales and questions are listed in Appendix 5.
Data Synthesis and Analysis
Because of substantial heterogeneity both in the populations and study design, we were unable to combine effect estimates using a statistical approach. Instead, we used narrative synthesis and described the results according to outcomes. We intended to find information on access and included articles discussing access based on admissions. Because we were interested in disparities between minority and majority populations (not just number of individuals from a minority population in long-term care) we calculated percentages when possible. These calculations were based on information presented in the articles, without adjustment for any potential covariates. We used a previously developed framework for minority access to health care for synthesis of qualitative studies (Kenning, Daker-White, Blakemore, Panagioti, & Waheed, Reference Kenning, Daker-White, Blakemore, Panagioti and Waheed2017).
Results
A total of 15,746 articles were captured by the initial database search and 175 additional articles were found through hand-searching (Figure 1). We removed 6,111 duplicates, leaving 9,635 studies for title and abstract screening. We screened 191 studies at the full-text stage and selected 59 studies for inclusion. Of the 60 studies, 42 were conducted in the United States (Ahmed, Ali, Lefante, Mullick, & Kinney, Reference Ahmed, Ali, Lefante, Mullick and Kinney2006; Ahmed, Allman, & DeLong, Reference Ahmed, Allman and DeLong2003; Akamigbo, Reference Akamigbo2007; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Andel, Hyer, & Slack, Reference Andel, Hyer and Slack2007; Angel, Angel, Aranda, & Miles, Reference Angel, Angel, Aranda and Miles2004; Angel, Douglas, & Angel, Reference Angel, Douglas and Angel2003; Angelelli, Grabowski, & Mor, Reference Angelelli, Grabowski and Mor2006; Aykan, Reference Aykan2002; Baxter, Bryant, Scarbro, & Shetterly, Reference Baxter, Bryant, Scarbro and Shetterly2001; Berridge & Mor, Reference Berridge and Mor2017; Cai, Salmon, & Rodgers, Reference Cai, Salmon and Rodgers2009; Duffy, Jackson, Schim, Ronis, & Fowler, Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Feng, Fennell, Tyler, Clark, & Mor, Reference Feng, Fennell, Tyler, Clark and Mor2011; Friedman, Steinwachs, Rathouz, Burton, & Mukamel, Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Gandhi, Lim, Davis, & Chen, Reference Gandhi, Lim, Davis and Chen2017; Gaugler, Kane, Kane, & Newcomer, Reference Gaugler, Kane, Kane and Newcomer2006; Gaugler, Leach, Clay, & Newcomer, Reference Gaugler, Leach, Clay and Newcomer2004; Goodwin, Howrey, Zhang, & Kuo, Reference Goodwin, Howrey, Zhang and Kuo2011; Harris, Reference Harris2007; Harris & Cooper, Reference Harris and Cooper2006; Iwasaki, Pierson, Madison, & McCurry, Reference Iwasaki, Pierson, Madison and McCurry2016; Jackson, Johnson, & Roberts, Reference Jackson, Johnson and Roberts2008; Jang, Kim, Chiriboga, & Cho, Reference Jang, Kim, Chiriboga and Cho2008; Kersting, Reference Kersting2001a,b; Liu, Wissoker, & Swett, Reference Liu, Wissoker and Swett2007; McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002; McLaughlin, Elahi, Ciesielski, & Pomerantz, Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016; Miller, Schneider, & Rosenheck, Reference Miller, Schneider and Rosenheck2011; Min, Reference Min2005; Putney, Keary, Hebert, Krinsky, & Halmo, Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Sharma, Reference Sharma2017; Spillman & Long, Reference Spillman and Long2009; Stein, Beckerman, & Sherman, Reference Stein, Beckerman and Sherman2010; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004; Temple, Andel, & Dobbs, Reference Temple, Andel and Dobbs2010; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002), seven in Canada (Brotman, Ryan, & Cormier, Reference Brotman, Ryan and Cormier2003; Forgues, Doucet, & Noël, Reference Forgues, Doucet and Noël2011; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Kortes-Miller, Boulé, Wilson, & Stinchcombe, Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Lai, Reference Lai2004; Metz, Reference Metz2007; Qureshi et al., Reference Qureshi, Schumacher, Talarico, Lapenskie, Tanuseputro and Scott2021), three in Norway (Arora, Rechel, Bergland, Straiton, & Debesay, Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Hanssen & Tran, Reference Hanssen and Tran2018), two in Australia (Basic, Shanley, & Gonzales, Reference Basic, Shanley and Gonzales2017; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), two in Sweden (Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Innes, Reference Innes2020), and one each in Belgium (Ahaddour, van den Branden, & Broeckaert, Reference Ahaddour, van den Branden and Broeckaert2016), Hong Kong (Chui, Arat, Chan, & Wong, Reference Chui, Arat, Chan and Wong2019), The Netherlands (Tenand, Bakx, & van Doorslaer, Reference Tenand, Bakx and van Doorslaer2020), Taiwan (Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008) and the United Kingdom (Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020).
Figure 1: PRISMA flow diagram
Quality Assessments
Of the 60 studies, 33 studies were rated as being of excellent quality (Akamigbo, Reference Akamigbo2007; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Basic et al., Reference Basic, Shanley and Gonzales2017; Berridge & Mor, Reference Berridge and Mor2017; Brotman et al., Reference Brotman, Ryan and Cormier2003; Cai et al., Reference Cai, Salmon and Rodgers2009; Chui et al., Reference Chui, Arat, Chan and Wong2019; Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Friedman et al., Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Gandhi et al., Reference Gandhi, Lim, Davis and Chen2017; Gaugler et al., Reference Gaugler, Kane, Kane and Newcomer2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Harris, Reference Harris2007; Harris & Cooper, Reference Harris and Cooper2006; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Liu et al., Reference Liu, Wissoker and Swett2007; McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002; Metz, Reference Metz2007; Miller et al., Reference Miller, Schneider and Rosenheck2011; Min, Reference Min2005; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Qureshi et al., Reference Qureshi, Schumacher, Talarico, Lapenskie, Tanuseputro and Scott2021; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Sharma, Reference Sharma2017; Spillman & Long, Reference Spillman and Long2009; Stein et al., Reference Stein, Beckerman and Sherman2010; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002), 22 were rated good quality (Ahmed et al., Reference Ahmed, Allman and DeLong2003, 2006; Andel et al., Reference Andel, Hyer and Slack2007; Angel et al., Reference Angel, Douglas and Angel2003, 2004; Aykan, Reference Aykan2002; Forgues et al., Reference Forgues, Doucet and Noël2011; Gaugler et al., Reference Gaugler, Leach, Clay and Newcomer2004; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Hanssen & Tran, Reference Hanssen and Tran2018; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Iwasaki et al., Reference Iwasaki, Pierson, Madison and McCurry2016; Jackson et al., Reference Jackson, Johnson and Roberts2008; Jenkins Morales & Robert, Reference Jenkins Morales and Robert2020; Kersting, Reference Kersting2001a,b; Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Lai, Reference Lai2004; McLaughlin et al., Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016; Tenand et al., Reference Tenand, Bakx and van Doorslaer2020; Travers, Hirschman, & Naylor, Reference Travers, Hirschman and Naylor2020; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), and 5 were rated fair quality (Appendix 6) (Ahaddour et al., Reference Ahaddour, van den Branden and Broeckaert2016; Innes, Reference Innes2020; Jang et al., Reference Jang, Kim, Chiriboga and Cho2008; Lehnert, Heuchert, Hussain, & König, Reference Lehnert, Heuchert, Hussain and König2019; Mahieu, Cavolo, & Gastmans, Reference Mahieu, Cavolo and Gastmans2019).
Minority Populations in Long-Term care and Influence of Minority Status on Admission
Influence of minority status on long-term care admission
Twenty-eight studies reported the influence of minority status on long-term care admission (Ahmed et al., Reference Ahmed, Allman and DeLong2003, 2006; Akamigbo, Reference Akamigbo2007; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Andel et al., Reference Andel, Hyer and Slack2007; Angel et al., Reference Angel, Douglas and Angel2003, 2004; Aykan, Reference Aykan2002; Berridge & Mor, Reference Berridge and Mor2017; Cai et al., Reference Cai, Salmon and Rodgers2009; Friedman et al., Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Gandhi et al., Reference Gandhi, Lim, Davis and Chen2017; Gaugler et al., Reference Gaugler, Leach, Clay and Newcomer2004, 2006; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Harris, Reference Harris2007; Harris & Cooper, Reference Harris and Cooper2006; Jenkins Morales & Robert, Reference Jenkins Morales and Robert2020; Kersting, Reference Kersting2001a,b; Liu et al., Reference Liu, Wissoker and Swett2007; Miller et al., Reference Miller, Schneider and Rosenheck2011; Qureshi et al., Reference Qureshi, Schumacher, Talarico, Lapenskie, Tanuseputro and Scott2021; Sharma, Reference Sharma2017; Spillman & Long, Reference Spillman and Long2009; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002). All studies were conducted in the United States. Metrics evaluating outcomes were odds ratios, hazard ratios, and risk ratios.
Four studies evaluated factors associated with admission to long-term care within minority populations (Table 1). Among one minority group, these studies evaluated differences between those who were admitted to long-term care and those who were not, without a comparison with a “majority” population (Angel et al., Reference Angel, Douglas and Angel2003, 2004; Gaugler et al., Reference Gaugler, Leach, Clay and Newcomer2004). Studies examined admissions among Mexican-Americans (Angel et al., Reference Angel, Douglas and Angel2003, 2004), Older migrants to Sweden (Innes, Reference Innes2020), and African Americans (Gaugler et al., Reference Gaugler, Leach, Clay and Newcomer2004). In three of these studies, long-term care admission increased with older age, eligibility for public health insurance, male gender, being widowed, limitations in performing activities of daily living, cognitive impairment, and family inability to manage care at home (Angel et al., Reference Angel, Douglas and Angel2003, 2004, Gaugler et al., Reference Gaugler, Leach, Clay and Newcomer2004). Innes found that age, living alone, and country of origin are all important factors, and concluded that caution is needed wen making generalizations about formal care in migrant populations (Innes, Reference Innes2020).
Table 1: Factors influencing long-term care admission for minority populations: Single group studies (n = 4)
Note: ADL = activities of daily living.
There were 21 studies comparing two or more ethnocultural groups (Table 2) (Ahmed et al., Reference Ahmed, Allman and DeLong2003, 2006; Akamigbo, Reference Akamigbo2007; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Andel et al., Reference Andel, Hyer and Slack2007; Aykan, Reference Aykan2002; Friedman et al., Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Gaugler et al., Reference Gaugler, Kane, Kane and Newcomer2006; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Harris, Reference Harris2007; Harris & Cooper, Reference Harris and Cooper2006; Kersting, Reference Kenning, Daker-White, Blakemore, Panagioti and Waheed2001a,b; Liu et al., Reference Liu, Wissoker and Swett2007; Miller et al., Reference Miller, Schneider and Rosenheck2011; Sharma, Reference Sharma2017; Spillman & Long, Reference Spillman and Long2009; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004; Temple et al., Reference Temple, Andel and Dobbs2010; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002). Two studies only reported crude outcome measures or estimates based on bivariate analyses (Ahmed et al., Reference Ahmed, Allman and DeLong2003; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004). Stevens et al. adjusted for one covariate (e.g., family socio-economic status, care recipient age, or memory and behavior problems) at a time and demonstrated a lower likelihood of admission to long-term care for blacks than for whites (Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004).
Table 2: Influence of minority status on long-term care admission: Multiple group studies (n = 23)
Note.
a Study reported non-significant differences between Hispanic and American Indian population compared with white population, but no values reported.
b Study reported multiple values for hazard ratio; each value was adjusted by one covariate at a time, so we have reported the range of hazard ratios.
Twenty-one studies used multivariable regressions, adjusting for a variety of covariates (Appendix 6). Outcomes examined in these studies included incident admissions to long-term care (n = 12) (Ahmed et al., Reference Ahmed, Ali, Lefante, Mullick and Kinney2006; Akamigbo, Reference Akamigbo2007; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Friedman et al., Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Harris & Cooper, Reference Harris and Cooper2006; Kersting, Reference Kersting2001a,b; Liu et al., Reference Liu, Wissoker and Swett2007; Sharma, Reference Sharma2017; Spillman & Long, Reference Spillman and Long2009) and time to admission (n = 6) (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2007; Andel et al., Reference Andel, Hyer and Slack2007; Aykan, Reference Aykan2002; Gaugler et al., Reference Gaugler, Kane, Kane and Newcomer2006; Temple et al., Reference Temple, Andel and Dobbs2010; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002), as well as both time to and odds of an incident admission (n = 1) (Cai et al., Reference Cai, Salmon and Rodgers2009). Length of follow-up ranged from immediate admission post hospital discharge to 12 years following baseline measurement (e.g., from a survey).
Ten of 23 studies compared the likelihood of blacks being admitted to or admitted sooner to long-term care compared with whites (Akamigbo, Reference Akamigbo2007; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Aykan, Reference Aykan2002; Cai et al., Reference Cai, Salmon and Rodgers2009; Friedman et al., Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Harris, Reference Harris2007; Liu et al., Reference Liu, Wissoker and Swett2007; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002). Seven comparisons across four studies showed that blacks had lower odds of admission, with a median odds ratio of 0.64 (range 0.48–0.99) (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Cai et al., Reference Cai, Salmon and Rodgers2009; Liu et al., Reference Liu, Wissoker and Swett2007). One study found that blacks discharged from hospital had greater odds of being admitted or admitted sooner to long-term care than whites, with a significant odds ratio of 1.04 (95% confidence interval [CI] 1.01–1.07) (Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011). Similarly, Ahmed and colleagues observed that blacks had lower odds of admission than others [sic] (Ahmed et al., Reference Ahmed, Allman and DeLong2003); however, blacks had higher odds of re-admission to long-term care after hospitalization than others [sic].
In 12 studies, whites were compared with Hispanics [sic], Latinos [sic], non-Whites [sic] or other [sic] groups (Aykan, Reference Aykan2002; Cai et al., Reference Cai, Salmon and Rodgers2009; Friedman et al., Reference Friedman, Steinwachs, Rathouz, Burton and Mukamel2005; Gaugler et al., Reference Gaugler, Kane, Kane and Newcomer2006; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Harris, Reference Harris2007; Harris & Cooper, Reference Harris and Cooper2006; Liu et al., Reference Liu, Wissoker and Swett2007; Miller et al., Reference Miller, Schneider and Rosenheck2011; Spillman & Long, Reference Spillman and Long2009; Temple et al., Reference Temple, Andel and Dobbs2010; Yaffe et al., Reference Yaffe, Fox, Newcomer, Sands, Lindquist and Dane2002). All but one study (Spillman & Long, Reference Spillman and Long2009) demonstrated that the minority group had a lower risk of being admitted or admitted sooner to long-term care than whites. One study of individuals with disabilities did not show a lower risk of admission for racial minority populations (Spillman & Long, Reference Spillman and Long2009).
Three studies compared blacks with non-blacks [sic] or Hispanics with non-Hispanic whites [sic] (Ahmed et al., Reference Ahmed, Ali, Lefante, Mullick and Kinney2006; Kersting, Reference Kersting2001a,b); they found that non-blacks and non-Hispanic whites were at greater risk of being admitted or admitted sooner to long-term care than their counterparts. Gaugler et al. found that African-Americans had a shorter time to long-term care admission than Latino populations (Gaugler et al., Reference Gaugler, Kane, Kane and Newcomer2006).
One study compared recent immigrants to long-standing residents and found that being a recent immigrant or waiting for a cultural or an ethnic-specific home increases wait-time for long-term care placement (Qureshi et al., Reference Qureshi, Schumacher, Talarico, Lapenskie, Tanuseputro and Scott2021).
Proportion of minority groups in long-term care
Nine studies of the 21 comparing two or more ethnocultural groups reported the proportions of older adults of minority populations who were residents of long-term care (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Andel et al., Reference Andel, Hyer and Slack2007; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Jenkins Morales & Robert, Reference Jenkins Morales and Robert2020; Liu et al., Reference Liu, Wissoker and Swett2007; Sharma, Reference Sharma2017; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004) All of these studies were conducted in the United States.
The studies compared ethnocultural minority groups with white or non-minority populations (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Andel et al., Reference Andel, Hyer and Slack2007; Gandhi et al., Reference Gandhi, Lim, Davis and Chen2017; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Jenkins Morales & Robert, Reference Jenkins Morales and Robert2020; Liu et al., Reference Liu, Wissoker and Swett2007; Sharma, Reference Sharma2017; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004). Three studies compared multiple minority groups with the majority population (Gandhi et al., Reference Gandhi, Lim, Davis and Chen2017; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Liu et al., Reference Liu, Wissoker and Swett2007). Eight studies compared the proportion of blacks with the proportion of whites (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006, Reference Akamigbo and Wolinsky2007; Berridge & Mor, Reference Berridge and Mor2017; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Jenkins Morales & Robert, Reference Jenkins Morales and Robert2020; Liu et al., Reference Liu, Wissoker and Swett2007; Sharma, Reference Sharma2017; Stevens et al., Reference Stevens, Owen, Roth, Clay, Bartolucci and Haley2004), and four of these observed a higher proportion of blacks in long-term care (Berridge & Mor, Reference Berridge and Mor2017; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Jenkins Morales & Robert, Reference Jenkins Morales and Robert2020; Sharma, Reference Sharma2017). Four studies compared non-whites [sic] (Andel et al., Reference Andel, Hyer and Slack2007), and others [sic] with whites (Gandhi et al., Reference Gandhi, Lim, Davis and Chen2017; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Liu et al., Reference Liu, Wissoker and Swett2007). Three studies found that the proportion of whites was higher than that of individuals belonging to minority populations in long-term care (Andel et al., Reference Andel, Hyer and Slack2007; Goodwin et al., Reference Goodwin, Howrey, Zhang and Kuo2011; Liu et al., Reference Liu, Wissoker and Swett2007). The most recent results from Gandhi et al. found the same for all minority groups expect Pacific Islanders, who had a higher prevalence than whites (Gandhi et al., Reference Gandhi, Lim, Davis and Chen2017).
Three studies explored residential facility use by eligible older migrants compared with those in their country of birth. Innes and Basic et al. did not report statistically significant results; however, they concluded that foreign-born individuals were less likely to use residential care than those living in their country of origin (Basic et al., Reference Basic, Shanley and Gonzales2017; Innes, Reference Innes2020). Tenand et al. found no significant inequities using the horizontal inequity index (Tenand et al., Reference Tenand, Bakx and van Doorslaer2020),
Expectations and Preferences
Twenty-seven studies evaluated expectations and preferences of different populations with regards to future long-term care placement (Table 3) (Ahaddour et al., Reference Ahaddour, van den Branden and Broeckaert2016; Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006; Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Chui et al., Reference Chui, Arat, Chan and Wong2019; Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Forgues et al., Reference Forgues, Doucet and Noël2011; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Hanssen & Tran, Reference Hanssen and Tran2018; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Iwasaki et al., Reference Iwasaki, Pierson, Madison and McCurry2016; Jackson et al., Reference Jackson, Johnson and Roberts2008; Jang et al., Reference Jang, Kim, Chiriboga and Cho2008; Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Lai, Reference Lai2004; McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002; McLaughlin et al., Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016; Metz, Reference Metz2007; Min, Reference Min2005; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Rodriguez, Reference Rodriguez2004; Stein et al., Reference Stein, Beckerman and Sherman2010; Travers et al., Reference Travers, Hirschman and Naylor2020; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019). Fourteen studies were conducted in the United States (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Iwasaki et al., Reference Iwasaki, Pierson, Madison and McCurry2016; Jackson et al., Reference Jackson, Johnson and Roberts2008; Jang et al., Reference Jang, Kim, Chiriboga and Cho2008; McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002; McLaughlin et al., Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016; Min, Reference Min2005; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Stein et al., Reference Stein, Beckerman and Sherman2010; Travers et al., Reference Travers, Hirschman and Naylor2020), six in Canada (Brotman et al., Reference Brotman, Ryan and Cormier2003; Forgues et al., Reference Forgues, Doucet and Noël2011; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Lai, Reference Lai2004; Metz, Reference Metz2007), three in Norway (Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Hanssen & Tran, Reference Hanssen and Tran2018) and one each in Australia (Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), Belgium (Ahaddour et al., Reference Ahaddour, van den Branden and Broeckaert2016), Hong Kong (Chui et al., Reference Chui, Arat, Chan and Wong2019), Sweden (Heikkilä & Ekman, Reference Heikkilä and Ekman2003), Taiwan (Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008), and the United Kingdom, England (Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020). Eleven studies used quantitative analyses (i.e., surveys or questionnaires) (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006; Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008; Iwasaki et al., Reference Iwasaki, Pierson, Madison and McCurry2016; Jackson et al., Reference Jackson, Johnson and Roberts2008; Jang et al., Reference Jang, Kim, Chiriboga and Cho2008; Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Lai, Reference Lai2004; McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002; McLaughlin et al., Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016; Min, Reference Min2005; Travers et al., Reference Travers, Hirschman and Naylor2020), 17 were qualitative studies involving focus groups or interviews (Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Brotman et al., Reference Brotman, Ryan and Cormier2003; Chui et al., Reference Chui, Arat, Chan and Wong2019; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Forgues et al., Reference Forgues, Doucet and Noël2011; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Hanssen & Tran, Reference Hanssen and Tran2018; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Metz, Reference Metz2007; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Stein et al., Reference Stein, Beckerman and Sherman2010; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), and three were qualitative reviews (Ahaddour et al., Reference Ahaddour, van den Branden and Broeckaert2016; Lehnert et al., Reference Lehnert, Heuchert, Hussain and König2019; Mahieu et al., Reference Mahieu, Cavolo and Gastmans2019). None of the studies assessed the impact of preferences and expectations on actual long-term care placement.
Table 3: Expectations and preferences of potential future long-term care residents (n = 27)
Studies using quantitative methods
Six studies assessed a single minority group: Korean Americans (Jang et al., Reference Jang, Kim, Chiriboga and Cho2008; Min, Reference Min2005), Muslims living in the United States (McLaughlin et al., Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016), Francophones as a linguistic minority in New Brunswick (Forgues et al., Reference Forgues, Doucet and Noël2011), sexual and gender minority older adults living in Canada (Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018), and Chinese Canadians (Lai, Reference Lai2004). In three studies, almost half of respondents indicated they would use a long-term care facility (Jang et al., Reference Jang, Kim, Chiriboga and Cho2008; Lai, Reference Lai2004; Min, Reference Min2005). A sample of Muslims in the United States reported a preference to receive care at home from family members or, if necessary, at a facility designed for Muslims (McLaughlin et al., Reference McLaughlin, Elahi, Ciesielski and Pomerantz2016).
Seven studies compared two groups: Japanese Americans with non-Japanese Americans (Iwasaki et al., Reference Iwasaki, Pierson, Madison and McCurry2016; McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002), LGBTQ+ with heterosexuals (Jackson et al., Reference Jackson, Johnson and Roberts2008), blacks with whites (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006), African American, Hispanic, and other undefined individuals from minority populations with whites[sic] (Travers et al., Reference Travers, Hirschman and Naylor2020), and regional populations within one country (Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008; Forgues et al., Reference Forgues, Doucet and Noël2011). The studies comparing Japanese Americans with all other Americans reported slightly different results, with one reporting that Japanese Americans were more likely to use residential care homes (McCormick et al., Reference McCormick, Ohata, Uomoto, Young, Graves and Kukull2002) and the other demonstrating no difference between groups (Iwasaki et al., Reference Iwasaki, Pierson, Madison and McCurry2016). Jackson et al. found more LGBTQ+ respondents felt that there was unequal access to social and health services, and that diversity and sensitivity training programmes, as well as gay retirement facilities, were needed (Jackson et al., Reference Jackson, Johnson and Roberts2008). Akamigbo and Wolinsky did not find a difference in expectations regarding long-term care use between blacks and whites (Akamigbo & Wolinsky, Reference Akamigbo and Wolinsky2006). Travers et al. reported that African American adults discussed having no or minimal control over the decision to be placed in institutional care, which differed from the white participants who reported total or some participation in their placement decision (Travers et al., Reference Travers, Hirschman and Naylor2020).The study on ethnic groups in Taiwan from different regions (Mainlanders, Taiwanese Holo, and Taiwanese Hakka) found that Mainlanders had a greater preference for long-term care placement compared with those from other regions, possibly because of differences in family influences (Chung et al., Reference Chung, Hsu, Wang, Lin, Huang and Amidon2008). Forgues et al. conducted a geographic survey of the availability of long-term care in the Canadian province of New Brunswick and concluded that there was limited access to long-term care for Francophones in some areas with higher population density (2011).
Studies using qualitative methods
Sixteen studies included interviews of various populations – including LGBTQ+ populations and their caregivers (Brotman et al., Reference Brotman, Ryan and Cormier2003; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Stein et al., Reference Stein, Beckerman and Sherman2010; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019); Arab Muslims, Arab Christians, Hispanics, blacks, and whites (Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006); Hispanics (Rodriguez, Reference Rodriguez2004); Japanese Canadians (Metz, Reference Metz2007); Chinese Canadians with elderly parents in China (Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016); Finnish individuals living in Sweden (Heikkilä & Ekman, Reference Heikkilä and Ekman2003); African American women (Riley, Reference Riley2019); African American, Hispanic and other individuals from minority populations (Travers et al., Reference Travers, Hirschman and Naylor2020); female Bangladeshi and Indian caregivers living in England (Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020); Nepalese living in Hong Kong (Chui et al., Reference Chui, Arat, Chan and Wong2019); and older adults who are migrants living in Norway (Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Hanssen & Tran, Reference Hanssen and Tran2018) – providing patients’ and caregivers’ perspectives with possible explanations for the difference in admission among groups. These studies described personal and logistical barriers to long-term care entry and some facilitators. We identified five main themes: language barriers, culture, family support, mistrust, and facilitators.
Language barriers
Individuals from different linguistic backgrounds reported language as a barrier to accessing and understanding information about long-term care (Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Metz, Reference Metz2007; Rodriguez, Reference Rodriguez2004), receipt of care (Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020), and social involvement (Hanssen & Tran, Reference Hanssen and Tran2018; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Metz, Reference Metz2007). Language barriers could reportedly cause discomfort for those trying to understand the admission process in long-term care procedures (Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Metz, Reference Metz2007; Rodriguez, Reference Rodriguez2004). Family members of potential residents also reported concerns about the resident’s inability to communicate in a different language and the subsequent impact on care, as well as the need for family member involvement (Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Hanssen & Tran, Reference Hanssen and Tran2018; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Metz, Reference Metz2007).
Culture
Thirteen studies found that respondents desired a care setting that met their cultural needs (Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Brotman et al., Reference Brotman, Ryan and Cormier2003; Chui et al., Reference Chui, Arat, Chan and Wong2019; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Hanssen & Tran, Reference Hanssen and Tran2018; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Metz, Reference Metz2007; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Travers et al., Reference Travers, Hirschman and Naylor2020; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019). Some respondents expressed the desire to avoid long-term care in favour of their private home, despite the availability of culture-specific services (Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016). However, availability of ethno-specific or cultural food was a factor influencing many respondents’ choice of long-term care (Metz, Reference Metz2007; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004). Some members of the LGBTQ+ populations worried that they might not be accepted by staff and other residents in the facilities (Brotman et al., Reference Brotman, Ryan and Cormier2003; Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019).
Family support
Ten studies described familial obligation as a cultural expectation and expression of love or dedication to their family member, but also many noted guilt around the inability to care for their loved one at home (Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Chui et al., Reference Chui, Arat, Chan and Wong2019; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Hanssen & Tran, Reference Hanssen and Tran2018; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Metz, Reference Metz2007; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004).
Fear and mistrust
All qualitative studies acknowledged that participants had anxiety, discomfort, or reluctance about others providing care (Arora et al., Reference Arora, Rechel, Bergland, Straiton and Debesay2020; Brotman et al., Reference Brotman, Ryan and Cormier2003; Chui et al., Reference Chui, Arat, Chan and Wong2019; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Hanssen & Tran, Reference Hanssen and Tran2018; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Herat-Gunaratne et al., Reference Herat-Gunaratne, Cooper, Mukadam, Rapaport, Leverton and Higgs2020; Kortes-Miller et al., Reference Kortes-Miller, Boulé, Wilson and Stinchcombe2018; Metz, Reference Metz2007; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Stein et al., Reference Stein, Beckerman and Sherman2010; Travers et al., Reference Travers, Hirschman and Naylor2020; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), particularly worries about a lack of cultural sensitivity or familial obligations (Duffy et al., Reference Duffy, Jackson, Schim, Ronis and Fowler2006; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Metz, Reference Metz2007), and fear of bias or discrimination (Brotman et al., Reference Brotman, Ryan and Cormier2003; Stein et al., Reference Stein, Beckerman and Sherman2010). Fear was also documented in those who were not yet residents in long-term care (Brotman et al., Reference Brotman, Ryan and Cormier2003; Gui & Koropeckyj-Cox, Reference Gui and Koropeckyj-Cox2016; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Metz, Reference Metz2007). Common fears included fear of victimization and fear of isolation (Metz, Reference Metz2007; Stein et al., Reference Stein, Beckerman and Sherman2010).
LGBTQ+ populations
There were five studies on LGBTQ+ populations’ expectations and preferences for long-term care (Brotman et al., Reference Brotman, Ryan and Cormier2003; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Stein et al., Reference Stein, Beckerman and Sherman2010; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019). These studies were included in the qualitative synthesis and the abovementioned themes. This section is included to highlight some of the unique perspectives highlighted in literature on LGBTQ+ populations. For example, some participants reported considering concealing their sexual identity to avoid discrimination (Jackson et al., Reference Jackson, Johnson and Roberts2008; Stein et al., Reference Stein, Beckerman and Sherman2010). Particularly, research reported strong fears that identifying as LGBTQ+ would result in an unsafe environment (Brotman et al., Reference Brotman, Ryan and Cormier2003; Jackson et al., Reference Jackson, Johnson and Roberts2008; Stein et al., Reference Stein, Beckerman and Sherman2010; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), a lack of inclusivity (Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), neglect or insufficient care (Brotman et al., Reference Brotman, Ryan and Cormier2003; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Stein et al., Reference Stein, Beckerman and Sherman2010; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019), and social isolation (Brotman et al., Reference Brotman, Ryan and Cormier2003; Stein et al., Reference Stein, Beckerman and Sherman2010; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019). One study surveyed staff of LGBTQ+-specific care homes and compared them with staff at non-specific homes, and found that staff working in LGBTQ+-specific homes were more aware of the challenges faced by the residents (Quigley, Reference Quigley2017).
Facilitators
Facilitation themes were presented in nine studies (Brotman et al., Reference Brotman, Ryan and Cormier2003; Chui et al., Reference Chui, Arat, Chan and Wong2019; Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Stein et al., Reference Stein, Beckerman and Sherman2010), such as availability of care providers who speak the same primary language as ethnic residents (Czapka & Sagbakken, Reference Czapka and Sagbakken2020; Heikkilä & Ekman, Reference Heikkilä and Ekman2003). Professional and ongoing education was suggested as a means to promote cultural awareness of LGBTQ+ and ethnic minority groups in long-term care (Brotman et al., Reference Brotman, Ryan and Cormier2003; Heikkilä & Ekman, Reference Heikkilä and Ekman2003; Putney et al., Reference Putney, Keary, Hebert, Krinsky and Halmo2018; Quigley, Reference Quigley2017; Riley, Reference Riley2019; Rodriguez, Reference Rodriguez2004; Stein et al., Reference Stein, Beckerman and Sherman2010).
Review studies
There were three review articles on the topic of preferences, attitudes, and perceptions of residential care of older adults (Ahaddour et al., Reference Ahaddour, van den Branden and Broeckaert2016; Lehnert et al., Reference Lehnert, Heuchert, Hussain and König2019; Mahieu et al., Reference Mahieu, Cavolo and Gastmans2019). The review article by Ahaddour et al. focused on elderly Turkish and Moroccan migrants in Belgium (Ahaddour et al., Reference Ahaddour, van den Branden and Broeckaert2016). They included 11 empirical studies and 10 articles or reports found in grey literature. There was a limited number of migrants using long-term care, attributed to five independent factors: language (e.g., brochures and other material only available in Dutch), lack of education among migrants, financial barriers, lack of awareness of home features, and a tendency to depend on family support for care, because of cultural expectations. Mahieu et al. conducted a review with 18 included studies on the perceptions of community-dwelling LGBT individuals on residential care for the elderly. The themes identified in this review were: discrimination on the basis of sexual orientation, loss of sexual identity, failing to acknowledge same-sex partners, and lack of privacy (Mahieu et al., Reference Mahieu, Cavolo and Gastmans2019). Lehnert et al. reviewed literature on preferences for long-term care, not specific to minority populations, in a systematic review with 59 included studies. The authors concluded that because most respondents desired to preserve their lifestyle, preferences depended on the perceived ability and independence of the patient within a particular long-term care arrangement to satisfy expectations (Lehnert et al., Reference Lehnert, Heuchert, Hussain and König2019).
Discussion and Implications
Results suggest that ethnocultural factors influence admission to long-term care for minority populations. The concerns raised by certain minority groups; notably, ethnocultural and immigrant populations, highlight the need for awareness of language concerns and cultural differences, and the consequent impact on minority populations’ quality of care.
The likelihood of admission of certain minority populations to long-term care appears to have high variability, yet is consistently lower among minority groups than among the majority population. Focus group and survey findings suggest that language is a barrier both prior to admission and within long-term care homes. Linguistic barriers in health care have been previously described as impacting satisfaction and trust in care (Barr & Wanat, Reference Barr and Wanat2005).
Although some studies demonstrated a higher proportion of blacks than whites living in long-term care, these findings were based on crude or unadjusted data. The observed higher prevalence may be the result of other factors, such as differences in Medicaid status, functional and cognitive impairment, and family support. Indeed, studies that used adjusted models to predict admission or time to admission to a long-term care overwhelmingly found that blacks had a lower probability than whites of entering long-term care. Along with the research from Ontario, Canada reporting that those who are recent immigrants and those waiting for a cultural or an ethnic-specific home experienced increased wait times for long-term care placement than long-standing residents (Qureshi et al., Reference Qureshi, Schumacher, Talarico, Lapenskie, Tanuseputro and Scott2021). These results suggest that language is not the only barrier to long-term care entry among all minority populations, given that a high proportion of blacks and other ethnic minorities are English speakers. Other social factors, including family support, socio-economic status, and eligibility for or enrolment in health insurance plans may pose systemic barriers to many visible minority groups, particularly in the United States where the majority of the literature on this topic has been conducted. Racialization and the social juxtaposition of blacks and whites was accentuated in the included studies published in the United States. There is literature outlining significant health disparities in racialized groups, particularly in the United States (Carlson & Chamberlain, Reference Carlson and Chamberlain2004). In places where the majority of care is publicly funded, such as in Canada, there are different considerations than in countries with predominately private funding for long-term care, although racialization and discrimination continue to permeate health outcomes (Veenstra, Reference Veenstra2009).
Providing culturally specific or diverse residential care options is particularly important for countries encouraging migration, in order to ensure that all residents have access to adequate care (Kalich, Heinemann, & Ghahari, Reference Kalich, Heinemann and Ghahari2016). The language and theoretical frameworks used to describe minority populations are important factors for the development of literature and solutions for health care inequalities. Many studies conducted in the United States used race to compare populations, whereas other studies tended to focus on migration status or ethnicity and country of origin for defining the minority population. Torres explored health within old age and ethnicity by using a social justice lens that highlights the need for representation and redistribution to enable a diversity-friendly world (Torres, Reference Torres2019). When minority populations are “othered”, or when race and ethnicity are confused, the minority populations’ realities are under-represented and oversimplified, and can only be understood through the lens of the majority. Torres suggests that research should move beyond stating that injustice exists for minority populations to exploring how inequalities are created and maintained despite our knowledge of these disparities (Torres, Reference Torres2019).
There is context-specific variation in health care delivery that often affects minority populations differently because of their socio-economic disadvantages or discrimination (Viruell-Fuentes et al., Reference Viruell-Fuentes, Miranda and Abdulrahim2012). This review has identified research on specific minority populations, with most results finding differences between minority and majority populations. There are a number of common barriers that influence the admission of minority populations into long-term care facilities. Linguistic barriers, lack of cultural sensitivity, familial obligations, and fear and mistrust of institutional care are all dependent on the sociocultural context, yet are common themes across the international English literature in this review.
Fear of discrimination appears to be a concern for residents from different ethnocultural groups and LGBTQ+ populations. Discrimination against the elderly has already been documented (Rogers, Thrasher, Miao, Boscardin, & Smith, Reference Rogers, Thrasher, Miao, Boscardin and Smith2015), and is likely magnified when those elderly are members of a second minority group (Jackson et al., Reference Jackson, Johnson and Roberts2008).
Long-term care should ensure that the needs of all residents are met. There may be an imperative to incorporate standards of care which include facilitators to meet real or perceived barriers for minority populations. Providing consistent, yet individualized care can be challenging; however, with an increasing demand for long-term care, policies that address unique ethnic identities and facilitate the delivery of quality care for individuals in their homes is important.
There is some evidence indicating that ethno-specific long-term care homes offering care specifically catering to the cultural needs of minority residents could improve access and quality of life for minority populations (Um, Reference Um2016). For example, two studies of ethno-specific care demonstrated increased communication among residents and improved family satisfaction when people were placed in an ethno-specific long-term care, but found no significant effect on overall psychiatric medication use (Runci, Eppingstall, & O’Connor, Reference Runci, Eppingstall and O’Connor2012; Runci, Eppingstall, van der Ploeg, & O’Connor, Reference Runci, Eppingstall, van der Ploeg and O’Connor2014). However, these facilities may be limited in supply and older adults seeking entry into ethno-specific long-term care often experience longer wait times than those waiting for admission to mainstream long-term care (Um, Reference Um2016).
Future research evaluating the care of minority populations in long-term care and their access to long-term care should be undertaken. There are some difficulties with minority research. For example, minorities are defined depending on their context, making it challenging to summarize across different cultural contexts, especially as attitudes, beliefs, and discrimination laws have changed over time (Mack et al., Reference Mack, Jesdale, Ulbricht, Forrester, Michener and Lapane2020). More qualitative research examining whether the perspectives of staff and long-term care residents belonging to minority groups have changed over time would support evaluation of long-term trends and capacity planning in this sector. This has been done for LGBTQ populations, which has found that negative beliefs and attitudes of health care providers can limit access to care (Stewart & O’Reilly, Reference Stewart and O’Reilly2017), which aligns with our findings, most especially in the fear and mistrust of health care and residential care.
Finally, further research on interventions that improve access to long-term care for minority populations could facilitate improved equity in care. Interventions should consider linguistic challenges for minority populations, as well as multi-language education sessions and printed materials for potential residents and their families. Cultural competency training and tool kits for staff could increase awareness of barriers to entry and support education about possible facilitators. For example, some Canadian long-term care homes have adopted LGBTQ+ inclusivity training programs to improve the care of LGBTQ+ elders in LTC homes (Sussman et al., Reference Sussman, Brotman, Macintosh, Chamberland, Macdonnell and Daley2018), and Ontario’s Centre for Learning, Research, and Innovation in Long Term Care released an interactive tool kit to give homes a practical guide to welcoming and building a diverse community environment (Center for Learning Research and Innovation in Long-term Care, 2020).
Strengths and Limitations
The literature identified in this review was predominantly (68.3%) conducted in the United States. Findings may therefore have limited applicability to countries and health systems with different funding structures, particularly for long-term care. Although it is not a limitation of this review, we observed that some minority populations were not well represented in the literature; this limits the generalizability of our inferences regarding minority populations’ access to long-term care, particularly to groups who were not examined in the studies that were reviewed. For example, there were no eligible studies on religious minority, Indigenous, and Two-Spirited populations. Additionally, we only found studies on Arab and LGBTQ+ populations in the category of studies measuring preferences and expectations but not in studies investigating access. Another limitation is that classification of whether studies included minority populations depends on the setting and the information provided about the setting by the studies.
Although we did not have the resources to search grey literature (e.g., contact prominent authors, hand search), we did identify 60 studies using very broad inclusion criteria that considered minority populations based on ethnicity, language, religion, and sexual orientation and gender identity. This decision led to substantial heterogeneity. Nonetheless, the strength in having a comprehensive approach and an encompassing definition of “minority” is that it enabled us to establish a broad overview of the current landscape of long-term care access for minority populations. We included both quantitative and qualitative research, which allowed us to evaluate the statistical findings from large studies as well as the perspectives represented in surveys and qualitative focus groups.
Conclusions and Implications
This review demonstrates that there are several barriers to access to long-term care for minority populations. The lack of knowledge of and satisfaction with long-term care services may explain the lower rates and odds of admission to long-term care among minority groups. Further research, including assessment of interventions that could mitigate access barriers, both actual and perceived, is necessary to minimize current differences in rates of admission impacting minority populations.
Acknowledgment
A.M. and M.S. were involved in every stage of the study design and drafted the first manuscript. N.S., A.J., E.H., and J.L. screened the article, extracted data, and were involved in the manuscript writing and editing. A.H., E.T.G., P.T., and V.W. provided in-kind support throughout the project duration as well as being involved in the manuscript writing and editing. None of the authors have any conflicts of interest to report
Funding
This work was supported by the Ministry of Health and Long-term Care (MOHLTC) Health Systems Research Fund Award for the Ontario QUILT (QUality for Individuals who require Long-Term support) Network Program (#2017-1097) and the Center for Individualized Health at Bruyère Research Institute.
Supplementary Materials
To view supplementary material for this article, please visit http://doi.org/10.1017/S0714980822000046.
