Access and Use of Services by Caregivers of Older Adults: A Scoping Review of Cultural and Linguistic Diversity

Stage 1: Identify the Research Question

This review sought to answer the following research question: What are the facilitators and barriers to access and use of HCBS for informal caregivers of CLD older adults living in Westernized countries?

Stage 2: Identify Relevant Literature

An academic librarian assisted in developing the search strategy, which was executed by BJ and DK in five databases (MEDLINE [Ovid], Embase [Ovid], CINAHL, PsycINFO [Ovid], and Web of Science) and was limited to literature published from January 2010 until October 12, 2022, the date of the final search, to capture the current state of the literature on this topic (see Supplementary File 2). Search results were imported into Covidence online software (https://www.covidence.org) by BJ and DK. The search strategy was limited to database searches due to time constraints.

Stage 3: Study Selection

At least two authors (AG, BJ, and DK) independently screened records by title and abstract, then by full text using Covidence. Disagreements were resolved with all authors. The inclusion criteria required included articles to be full-text, primary studies, English-language, and published in a peer-reviewed journal; have a study sample that included informal caregivers of community-dwelling CLD older adults in a Westernized country; and report caregivers’ facilitators and/or barriers to access or use of HCBS. Westernized countries were defined as European Union members plus Australia, Canada, Iceland, New Zealand, Norway, Switzerland, the United Kingdom, and the United States. Older adults were defined as having an average age over 65, having a diagnosis typically occurring in older adults, for example, dementia, or those identified as older adults, seniors, or elderly by study authors. Studies were excluded if informal caregivers did not live in the same geographical region as care recipients such that they could not provide regular in-person care, or caregiver perspectives were not included in the findings. One author (DK) performed a critical appraisal of the included studies using the Joanna Briggs Institute critical appraisal tools to enhance the quality of the review (Lockwood et al., 2015; Moola et al., 2020). Articles were not excluded based on quality since this is not required within the Arksey and O’Malley (2005) framework.

Stage 4: Charting the Data

At least two researchers (BJ, CO, and DK) independently extracted data pertaining to host country, participants’ CLD identity, study design, study aim, sample size, facilitators and barriers to HCBS access and use related to CLD identity, and funding source.

Stage 5: Collating, Summarizing, and Reporting Results

Review results are presented through descriptive statistics of included studies and a narrative summary of findings. Implications of the analysis are then discussed.

Knowledge of Services

Caregivers needed to know about HCBS to access and use HCBS. Culturally appropriate facilitators to knowledge were healthcare providers who understood the barriers they faced (Czapka & Sagbakken, 2020; Ketchum et al., 2022) and immigrant-serving community organizations (Browne & Braun, 2017; Koehn et al., 2019; Xiao et al., 2015). Caregivers used persistence, desperation, informal networks, and luck to access information if knowledge was not accessible through formal avenues (Berdai Chaouni & De Donder, 2019; Berdai Chaouni et al., 2020; Czapka & Sagbakken, 2020; Gelman, 2010; Nielsen et al., 2020). Barriers to knowledge identified in the included studies were difficulty navigating healthcare systems (Berdai Chaouni et al., 2020; Berdai Chaouni & De Donder, 2019; Blix & Munkejord, 2022; Browne et al., 2014; Browne & Braun, 2017; Casado & Lee, 2012; Czapka & Sagbakken, 2020; Gelman, 2010; Haralambous et al., 2014; Nielsen et al., 2020; Pound & Greenwood, 2016; Shanley et al., 2012; Sun et al., 2014; Willis et al., 2016; Xiao et al., 2015) and difficulty understanding information about HCBS (Czapka & Sagbakken, 2020; Haralambous et al., 2014; Nielsen et al., 2020; Willis et al., 2016). Studies focusing on caregivers of persons with dementia reported delayed dementia diagnosis as a barrier to subsequent access to knowledge about dementia-specific services (Baghirathan et al., 2020; Biswas et al., 2022; Gelman, 2010; Ketchum et al., 2022; Krishnamurthi et al., 2022; Nielsen et al., 2020; Shanley et al., 2012).

Caregivers in included studies accessed knowledge about HCBS from a variety of sources. Knowledge came from healthcare providers who shared their CLD identity or understood the barriers they faced (Czapka & Sagbakken, 2020; Ketchum et al., 2022), or immigrant-serving agencies or community organizations that disseminated information about HCBS (Browne & Braun, 2017; Koehn et al., 2019; Xiao et al., 2015). These organizations needed close communication with HCBS organizations to ensure their information was complete and accurate (Koehn et al., 2019; Xiao et al., 2015). In the absence of accessible formal sources of knowledge, desperation, informal networks, persistence, and luck facilitated access information, for example, friends or family with insider knowledge of HCBS (Berdai Chaouni & De Donder, 2019; Berdai Chaouni et al., 2020; Czapka & Sagbakken, 2020; Gelman, 2010; Nielsen et al., 2020).

Conversely, many caregivers in included studies struggled with the complexity of healthcare systems, reporting that they did not always know what services were available or how to access information (Berdai Chaouni et al., 2020; Berdai Chaouni & De Donder, 2019; Blix & Munkejord, 2022; Browne et al., 2014; Browne & Braun, 2017; Casado & Lee, 2012; Czapka & Sagbakken, 2020; Gelman, 2010; Haralambous et al., 2014; Nielsen et al., 2020; Pound & Greenwood, 2016; Shanley et al., 2012; Sun et al., 2014; Willis et al., 2016; Xiao et al., 2015). Caregivers from countries without comparable services may have limited expectations of HCBS in their new country (Shanley et al., 2012). Some caregivers reported that they could not always understand the information they received about HCBS due to language barriers or literacy skills (Czapka & Sagbakken, 2020; Haralambous et al., 2014; Nielsen et al., 2020; Willis et al., 2016). Some included studies focused on caregivers of persons with dementia who identified delayed dementia diagnosis, often due to beliefs or stigma surrounding dementia, as a barrier to accessing knowledge about dementia-specific services (Baghirathan et al., 2020; Biswas et al., 2022; Gelman, 2010; Ketchum et al., 2022; Krishnamurthi et al., 2022; Nielsen et al., 2020; Shanley et al., 2012).

Accessing Services

Accessing services was the second stage where CLD caregivers could face facilitators or barriers to accessing and using HCBS. Study results pertaining to accessing services are discussed according to willingness to access services, that is, caregiver or care recipients’ desire or inclination to access services, and caregiver’s ability to access services.

Using Services

The final stage where a CLD caregiver could experience facilitators or barriers was in using HCBS. Included studies reported that culturally appropriate care, service providers or program participants with shared culture and/or language, and culturally tailored activities facilitated positive experiences and continued service use (Baghirathan et al., 2020; Biswas et al., 2022; Blix & Munkejord, 2022; Browne et al., 2014; Browne & Braun, 2017; Cooper et al., 2020; Giuntoli & Cattan, 2012; Greenwood et al., 2016; Haralambous et al., 2014; Herat-Gunaratne et al., 2020; Horsfall et al., 2016; Jung Kim et al., 2019; Ketchum et al., 2022; Krishnamurthi et al., 2022; Motta-Ochoa et al., 2021; Nielsen et al., 2020; Pound & Greenwood, 2016; Shanley et al., 2012; Willis et al., 2016; Xiao et al., 2015), while culturally and linguistically inappropriate care and disrespectful care were barriers to acceptable services and continued HCBS use (Baghirathan et al., 2020; Benedetti et al., 2013; Berdai Chaouni et al., 2020; Berdai Chaouni & De Donder, 2019; Biswas et al., 2022; Browne et al., 2014; Casado et al., 2015; Casado & Lee, 2012; Cooper et al., 2020; Czapka & Sagbakken, 2020; Gelman, 2010; Giuntoli & Cattan, 2012; Greenwood et al., 2016; Herat-Gunaratne et al., 2020; Koehn et al., 2019; Liu & McDaniel, 2015; Motta-Ochoa et al., 2021; Nielsen et al., 2020; Nkimbeng et al., 2022; Pound & Greenwood, 2016; Richardson et al., 2019; Shanley et al., 2012; Strudwick & Morris, 2010; Willis et al., 2016).

Caregivers interviewed in included studies reported that service providers who shared the care recipient’s language or culture facilitated positive experiences with HCBS (Blix & Munkejord, 2022; Browne et al., 2014; Browne & Braun, 2017; Cooper et al., 2020; Greenwood et al., 2016; Haralambous et al., 2014; Herat-Gunaratne et al., 2020; Horsfall et al., 2016; Jung Kim et al., 2019; Ketchum et al., 2022; Krishnamurthi et al., 2022; Nielsen et al., 2020; Pound & Greenwood, 2016; Shanley et al., 2012; Xiao et al., 2015). Some caregivers relied on CLD-led organizations for services for this reason (Baghirathan et al., 2020), while others shared concerns about the limited diversity of service providers (Nkimbeng et al., 2022). Shared language and culture facilitated communication and accelerated the building of trust and rapport between service providers and care recipients (Browne et al., 2014; Greenwood et al., 2016; Ketchum et al., 2022; Pound & Greenwood, 2016; Xiao et al., 2015). Sharing a religious background with service providers promoted the following of religious observances (Greenwood et al., 2016; Pound & Greenwood, 2016). Notably, not all caregivers prioritized culturally or linguistically matched service providers, instead favoring providers who performed their job well and services that fit the care recipient’s needs (Browne et al., 2014; Horsfall et al., 2016; Nielsen et al., 2020). Several caregivers highlighted that service providers who understood and respected the care recipient’s culture, built trust, promoted dignity, assessed cultural and religious needs, communicated openly with care recipients and families, engaged in culturally tailored activities, and used interpreters as needed could meet the care recipient’s needs irrespective of the provider’s background (Browne et al., 2014; Giuntoli & Cattan, 2012; Herat-Gunaratne et al., 2020; Motta-Ochoa et al., 2021; Pound & Greenwood, 2016; Willis et al., 2016). Group programs with culturally tailored activities or participants with shared culture and/or language were enjoyable for some care recipients, especially when staff facilitated relationships between participants; however, programs were not always designed for culturally diverse groups (Biswas et al., 2022; Browne & Braun, 2017; Krishnamurthi et al., 2022; Motta-Ochoa et al., 2021).

Conversely, a lack of culturally or linguistically appropriate care resulted in negative experiences for caregivers and care recipients. Language barriers were the most cited challenge in using HCBS (Baghirathan et al., 2020; Benedetti et al., 2013; Berdai Chaouni & De Donder, 2019; Biswas et al., 2022; Casado et al., 2015; Casado & Lee, 2012; Czapka & Sagbakken, 2020; Gelman, 2010; Greenwood et al., 2016; Herat-Gunaratne et al., 2020; Koehn et al., 2019; Liu & McDaniel, 2015; Nielsen et al., 2020; Nkimbeng et al., 2022; Pound & Greenwood, 2016; Richardson et al., 2019; Shanley et al., 2012; Willis et al., 2016). Language barriers limited the care recipient’s ability to express their needs, which could result in suboptimal care provision, caregiver anxiety, and discontinuation of services (Berdai Chaouni & De Donder, 2019; Nielsen et al., 2020; Willis et al., 2016). Some caregivers were not allowed to engage in care activities despite their ability to bridge cultural and linguistic gaps between care recipients and service providers (Blix & Munkejord, 2022). Several caregivers shared that language barriers could prevent care recipients from fully participating in services held in group settings, leading them to feel isolated, abandoned, and unwelcome (Benedetti et al., 2013; Biswas et al., 2022; Koehn et al., 2019; Shanley et al., 2012; Willis et al., 2016). Several caregivers found that language barriers could be exacerbated by cultural differences in non-verbal communication, diagnosis-related communication barriers, or incorrect assumptions that a care recipient understood the service provider (Greenwood et al., 2016; Pound & Greenwood, 2016; Richardson et al., 2019; Shanley et al., 2012). Miscommunication, lack of communication, or misunderstandings about what services the service provider would deliver could negatively affect care and relationships with service providers (Blix & Munkejord, 2022; Cooper et al., 2020; Giuntoli & Cattan, 2012; Herat-Gunaratne et al., 2020).

Food, entertainment, and religion were identified as important aspects of culturally appropriate care. Food provided for care recipients could be unfamiliar and unappetizing, and service providers did not always follow cultural and religious beliefs and traditions around food (Baghirathan et al., 2020; Berdai Chaouni et al., 2020; Berdai Chaouni & De Donder, 2019; Casado et al., 2015; Czapka & Sagbakken, 2020; Herat-Gunaratne et al., 2020; Nielsen et al., 2020; Shanley et al., 2012; Willis et al., 2016). Unfamiliar television, pastimes, or music could isolate the care recipient in group settings (Baghirathan et al., 2020; Nielsen et al., 2020). When service providers did not understand or respect care recipients’ religious needs, such as sex-matched service providers or washing rituals, they often did not meet these needs (Greenwood et al., 2016; Shanley et al., 2012). Factors contributing to unmet religious needs were rushing through services and unpredictable timing of homecare services (Berdai Chaouni et al., 2020; Berdai Chaouni & De Donder, 2019; Greenwood et al., 2016; Nielsen et al., 2020; Shanley et al., 2012).

Caregivers in some included studies found that care recipients received undignified and disrespectful care, which could lead to distrust, frustration, and the cessation of services (Berdai Chaouni et al., 2020; Browne et al., 2014; Nielsen et al., 2020; Pound & Greenwood, 2016; Strudwick & Morris, 2010). Caregivers shared examples of racism, discrimination, cultural insensitivity, and disrespect by service providers, including making assumptions based on ethnicity, not meeting a care recipient’s need for privacy, rushing the care recipient through care routines, and an inability or unwillingness to meet cultural needs (Baghirathan et al., 2020; Berdai Chaouni et al., 2020; Biswas et al., 2022; Browne et al., 2014; Czapka & Sagbakken, 2020; Giuntoli & Cattan, 2012; Haralambous et al., 2014; Motta-Ochoa et al., 2021; Nielsen et al., 2020; Pound & Greenwood, 2016; Strudwick & Morris, 2010).

Overall Findings

Caregivers of CLD older adults faced facilitators and barriers to HCBS at each temporal stage of access and use: knowledge of HCBS, willingness to use HCBS, ability to access HCBS, and use of HCBS. An overarching theme emerging from this review is the need for culturally appropriate care that can adapt to meet the various needs of CLD clients, requiring service providers, organizations, and healthcare systems to commit to changing the status quo of service delivery. Facilitators and barriers identified in this review often related to language, culturally appropriate care, beliefs about caregiving and dementia, trust, discrimination, system navigation, informal networks, and the diversity of service providers. Notably, included studies present far more barriers than facilitators, which may reflect both the extent of challenges faced by CLD caregivers and increasing recognition of these challenges in the literature. Only four included studies reported on facilitators to CLD caregivers’ ability to access HCBS, the least citations for any category of facilitator or barrier. This underrepresentation could be reflective of a true lack of facilitators for the ability to access services, a gap in the literature investigating and reporting on these facilitators, or an indication that facilitators may not be directly linked to cultural or linguistic differences.

Existing literature echoes facilitators to HCBS for CLD caregivers as a knowledge gap (Greenwood et al., 2015; Kenning et al., 2017); however, our review contributes more context around facilitators to address this gap. This review adds the role of family and friends, desperation and caregiver crises, immigrant-serving organizations, and trusting relationships with healthcare providers in facilitating CLD caregivers’ access and use of HCBS. Findings supported by the current literature include the mistrust of HCBS, limited availability of highly desired culturally tailored services, influence of filial piety on care decisions, and experiences with cultural insensitivity and racism while interacting with HCBS (Duran-Kiraç et al., 2021; Greenwood et al., 2015; Johl et al., 2016; Kenning et al., 2017). Existing literature highlights strong preferences for culturally and linguistically matched care providers (Greenwood et al., 2015; Kenning et al., 2017), while our review adds the viewpoint that skilled, respectful, and culturally sensitive care providers are acceptable to some CLD caregivers.

Implications for Research

Future research should continue exploring the experiences of CLD populations with HCBS access and use to inform healthcare policies, education, and practice. Studies included in the review emphasize the importance of exploring the differences and similarities within and between groups and the experiences of caregivers of various ethnicities, socioeconomic statuses, genders, and acculturation levels (Arora et al., 2020; Berdai Chaouni & De Donder, 2019; Browne & Braun, 2017; Czapka & Sagbakken, 2020; Farrar et al., 2018; Liu & McDaniel, 2015; Richardson et al., 2019). Future research could address barriers at each temporal stage of accessing and using HCBS, focusing on disseminating knowledge, developing HCBS that are accessible and acceptable to CLD populations, and addressing language barriers. The literature could be reviewed further to capture perspectives of service providers and care recipients or to capture suggestions from stakeholders on how to improve the accessibility and acceptability of HCBS.

Implications for Practice

Review findings suggest that healthcare and service providers can better support CLD clients by working within a cultural humility framework, avoiding assumptions based on cultural background, and completing thorough assessments of clients’ needs. The concept of cultural humility embodies critical self-reflection, humility, lifelong learning, and recognition of power imbalances to promote empowerment, respect, and optimal care that is culturally appropriate for clientele from all backgrounds (Foronda et al., 2016). Included studies emphasized that providers should not make assumptions about CLD caregivers’ and care recipients’ willingness or need for HCBS (Arora et al., 2020; Gelman, 2010; Strudwick & Morris, 2010). Instead, providers should explore individual, family, and cultural needs and values and present options for HCBS accordingly (Giuntoli & Cattan, 2012; Greenwood et al., 2016; Haralambous et al., 2014; Richardson et al., 2019; Xiao et al., 2015), which may improve reception to HCBS (Casado et al., 2015; Lee & Smith, 2012). Review findings promote assessing for cultural and religious needs to be able to better understand, respect, and meet clients’ needs. The review identified family and friends as important facilitators to knowledge and ability to access HCBS. Healthcare and service providers should therefore assess caregiver access to support from family and friends and supplement support as needed. Review results highlight crises or desperation as motivators to accessing and using HCBS. Healthcare providers may consider developing plans with families before a crisis occurs to establish adequate support in the event of a caregiving crisis.

Implications for Policy

Review results highlight the need for policy changes to improve HCBS. System-level policy changes must target disparities within healthcare systems, system navigation, and increased CLD representation at all levels of healthcare delivery and policy. Systems in Westernized countries are designed for their majority populations and disproportionately disadvantage CLD populations (Bell, 2021). Policies and systems need to be redesigned to meet the needs of a diverse population. Studies included in the review advocate for seeking out and listening to perspectives of CLD caregivers to inform policies to develop affordable, accessible, and acceptable HCBS for CLD communities (Berdai Chaouni & De Donder, 2019; Berdai Chaouni et al., 2020; Blix & Munkejord, 2022; Browne & Braun, 2017; Browne et al., 2014; Casado & Lee, 2012; Farrar et al., 2018; Sun et al., 2014). Funding for HCBS should consider the needs of CLD caregivers, for example, allocating funding for culturally tailored services, compensation for informal caregivers in lieu of HCBS, and changes to HCBS needed to better support CLD clients. Review findings identified that system navigation is challenging for many CLD caregivers, and interventions to facilitate system navigation may improve access to HCBS (Ketchum et al., 2022; Liu & McDaniel, 2015; Pound & Greenwood, 2016; Shanley et al., 2012; Willis et al., 2016). Policies should address the complexities of the healthcare system and ensure system navigation supports are available. Review findings promote increased cultural and linguistic diversity in the healthcare field (Ketchum et al., 2022; Lee & Smith, 2012; Sun et al., 2014), which can improve a healthcare system’s ability to provide safe and appropriate care to CLD populations (Bell, 2021). Changes towards anti-racist health program pedagogy may better support CLD students and facilitate increased diversity in healthcare (Bell, 2021).

Policy changes at HCBS organizations should address language barriers, pairing CLD clients with preferred service providers, access to culturally appropriate and tailored services, and system navigation. Included studies encourage the availability and use of strategies and tools to overcome language barriers, including language-matching service providers, interpreter services, simplified language, engaging caregivers in activities when possible, and building relationships with CLD-led organizations to promote culturally and linguistically appropriate dissemination of information (Blix & Munkejord, 2022; Casado et al., 2015; Casado & Lee, 2012; Koehn et al., 2019; Lee & Smith, 2012; Willis et al., 2016; Xiao et al., 2015). Review findings promote pairing CLD clients with services providers who share their cultural background or who provide culturally appropriate care. Findings indicate that culturally tailored services are highly desired by many CLD caregivers but are not always available or accessible. Included studies suggest including culturally inclusive activities into programming (Biswas et al., 2022) and developing partnerships between mainstream and ethno-specific services that could improve the availability and quality of both types of services (Casado et al., 2015; Koehn et al., 2019). HCBS organizations could also facilitate support with system navigation, for example, by connecting new and experienced caregivers (Pound & Greenwood, 2016).

Strengths and Potential Limitations

Strengths of this scoping review include the representation of a broad range of perspectives through the inclusion of publications that represent numerous CLD identities in nine countries without limitations related to diagnoses. This review also has limitations. The search strategy was limited to five databases and by publication date, English language, and peer-reviewed publications. Inclusion of articles that were represented by gray literature and journals in non-English languages may have strengthened the review particularly given the study focus on CLD caregivers. Our focus on Westernized countries limits the generalizability of findings to these countries. Only facilitators and barriers with clear ties to culture and language were extracted, so relevant factors may have been overlooked. Conversely, findings may be overly attributed to culture since most included studies did not compare CLD and majority population experiences. Lastly, included studies ranged from poor to high quality, which may affect review results. However, the use of a single appraiser and insufficient methodological data reported in some included articles limited the quality of the critical appraisal.