Introduction
International migration has historically influenced population dynamics and remains a major concern for policymakers globally (Ozturk Reference Ozturk, Alaoui-Faris, Federico and Grisold2022; Pooley Reference Pooley2017; Rampazzo et al. Reference Rampazzo, Rango, Weber, Bertoni, Fontana and Gabrielli2023). According to a recent United Nations report, the global population of international migrants in 2020 was approximately 281 million (McAuliffe and Triandafyllidou Reference McAuliffe and Triandafyllidou2022). Among these migrants, around 40.6 million individuals were of African origin (Nyaoro Reference Nyaoro and Muenstermann2023). Notably, the number of African migrants has more than doubled since 1990, making it one of the most rapidly growing subpopulations migrating to Western countries (Hugo Reference Hugo2010; International Organization for Migration 2024; Venters and Gany Reference Venters and Gany2011).
Amidst a global migration phenomenon involving over a billion people (World Health Organisation 2022), some migrant-receiving nations face challenges to their public health policies and programs due to increased cultural diversity and shifts in population demographics (Gushulak et al. Reference Gushulak, Weekers and MacPherson2009; Renzaho Reference Renzaho2023). Consequently, there are concerns about meeting the diverse healthcare needs of emerging multicultural and multiethnic communities (Davies Reference Davies, John and Group2016; El Alaoui-Faris Reference El Alaoui-Faris, Alaoui-Faris, Federico and Grisold2022). Although not equally distributed across all migrant groups, the research identifies that the racial/ethnic cohort experiences a higher prevalence of factors associated with vulnerability (Gushulak et al. Reference Gushulak, Weekers and MacPherson2009). Race, ethnicity, pre- and post-migration lifestyles, behaviors, and genetic predispositions to certain illnesses often link to health disparities among migrants and other racial and ethnic minorities (Belahsen Reference Belahsen, Alaoui-Faris, Federico and Grisold2022; Montesi et al. Reference Montesi, Caletti and Marchesini2016; Renzaho et al. Reference Renzaho, Polonsky and Mellor2016). Despite the healthy migrant hypothesis, which suggests that migrants from certain countries experience lower disease rates than host populations (El Alaoui-Faris Reference El Alaoui-Faris, Alaoui-Faris, Federico and Grisold2022), acculturation causes this advantage to wane over time. As migrants adapt and adjust to new environments, research indicates evidence of post-migration disadvantage and a shift in their health status to gradually align with that of native populations (Idemudia Reference Idemudia2020; Montgomery et al. Reference Montgomery, Zhen Liu, Agarwal and White2016; Ozturk Reference Ozturk, Alaoui-Faris, Federico and Grisold2022).
Migrating between different health environments affects the longer-term epidemiology of diseases and health outcomes at migrant destinations (Greenaway and Castelli Reference Greenaway and Castelli2019; Gushulak et al. Reference Gushulak, Weekers and MacPherson2009). In high-income countries, migration also significantly contributes to an aging demographic. According to the United Nations (UN DESA 2020), in 2020, more than 1 in 10 individuals aged 65 years or older were international migrants. Recent research indicates that older migrants have higher rates of hospitalizations, morbidity, and mortality related to age-related chronic and incurable conditions compared to the host society (El Alaoui-Faris Reference El Alaoui-Faris, Alaoui-Faris, Federico and Grisold2022; Herring and Ezeofor Reference Herring, Ezeofor and Muenstermann2023; Reis et al. Reference Reis, Gerdau, Buguet, Alaoui-Faris, Federico and Grisold2022). As global population mobility trends continue, by 2056, this vulnerable, older population is projected to become much larger and more diverse and may require palliative care due to chronic and life-limiting illnesses (Adsersen et al. Reference Adsersen, Thygesen and Kristiansen2023; Kruja Reference Kruja, Alaoui-Faris, Federico and Grisold2022; Spelten et al. Reference Spelten, MacDermott and Morgan2021; Verne Reference Verne, Abel and Kellehear2022; Wilson et al. Reference Wilson, McDonald and Temple2020). Migrant-receiving countries must enhance their capacity and preparedness to incorporate the healthcare needs and preferences of migrants into their healthcare systems (Belahsen Reference Belahsen, Alaoui-Faris, Federico and Grisold2022). Additionally, a deeper understanding is needed regarding how specialized services, such as palliative care, may or may not translate effectively across diverse contexts (Samuels and Lemos Dekker Reference Samuels and Lemos Dekker2023).
Palliative care has evolved into a distinct and essential healthcare specialty since the late 20th century. Rather than solely focusing on end-of-life care, palliative care prioritizes enhancing the quality of life for patients and caregivers, regardless of the illness or stage (Ditillo Reference Ditillo2002; Grisold and Grisold Reference Grisold, Grisold, Alaoui-Faris, Federico and Grisold2022). Despite growing recognition, the global provision of palliative care remains inadequate. Approximately 20 million people require end-of-life palliative care annually, yet only 12–14% receive it (Verne Reference Verne, Abel and Kellehear2022; World Health Organisation 2020). Furthermore, only about 30 countries have comprehensive policies, protocols, and specialized capacity to provide palliative care (Clark et al. Reference Clark, Baur and Clelland2020; Hawley Reference Hawley2017; Sleeman et al. Reference Sleeman, de Brito and Etkind2019).
Research suggests that migrant populations may have limited awareness and knowledge of Western palliative care models, potentially exacerbating disparities in access to care (Adsersen et al. Reference Adsersen, Thygesen and Kristiansen2023; Carlsson and Hjelm Reference Carlsson and Hjelm2021; Grisold and Grisold Reference Grisold, Grisold, Alaoui-Faris, Federico and Grisold2022). This issue is particularly concerning given the projected 87% increase in the burden of health-related suffering amenable to end-of-life interventions by 2060 (Clark et al. Reference Clark, Baur and Clelland2020; Sleeman et al. Reference Sleeman, de Brito and Etkind2019).
Despite growing attention to migrants’ health, disparities in health outcomes persist, adversely affecting their quality of care. Addressing health inequities requires a multifaceted approach, including raising awareness among migrant communities and enhancing healthcare providers’ cultural competencies regarding palliative care access and utilization (Fares et al. Reference Fares, Domínguez and Puig-Junoy2023; Gerber et al. Reference Gerber, Maharaj and Brijnath2020; Möller et al. Reference Möller, Assareh and Stubbs2021; Tan et al. Reference Tan, Low and Howard2021). Health research must collect customized, racial, and ethnic data to inform policy interventions and service delivery, addressing the needs of migrant populations (Renzaho Reference Renzaho2023; Torensma et al. Reference Torensma, Onwuteaka-Philipsen and de Voogd2021; Venters and Gany Reference Venters and Gany2011). By identifying gaps in the current literature, this review aims to highlight research deficiencies and offer an insight for future investigations into the end-of-life care perspectives of African migrants. Definitions of different terms used in this review are listed in Table 1 for clarity.
Table 1. Key phrases, concepts, and terms used in this review
Methods
A scoping review was conducted from February 2023 to August 2024, guided by a preregistered protocol (DOI: 10.17605/OSF.IO/83WSB). This review followed the 5-stage framework for scoping reviews developed by Arksey and O’Malley (Reference Arksey and O’Malley2005) and later refined by Levac et al. (Reference Levac, Colquhoun and O’Brien2010).
Arksey and O’Malley’s (Reference Arksey and O’Malley2005) 5-stage framework involves (1) identifying the research question, (2) locating relevant studies, (3) selecting studies, (4) charting the data, and (5) collating, summarizing, and reporting the results. This framework establishes a foundational process for scoping reviews. Levac et al. (Reference Levac, Colquhoun and O’Brien2010) refined this framework by emphasizing the need to clarify and link the study’s purpose with the research questions and by using an iterative team approach for literature search, study selection, and data extraction to improve methodological rigor. These refinements aim to enhance the transparency and comprehensiveness of scoping reviews.
Stage 1: identifying the review questions
This stage focused on the body of evidence in the included studies, to answer the following research questions:
1. What is known about palliative and end-of-life care experiences among African migrant communities living outside of Africa?
2. What specific experiences, challenges, or facilitators are reported by African migrant communities regarding palliative and end-of-life care services?
3. How do existing policies and procedures impact the adoption and provision of palliative and end-of-life care for African migrant communities?
Stage 2: identifying relevant studies
A comprehensive search strategy was developed iteratively in collaboration with a research librarian (Appendix B). We applied the PCC mnemonic (Population, Concept, and Context) to create a search algorithm and inclusion/exclusion criteria (Appendix A), as recommended by Pollock et al. (Reference Pollock, Peters and Khalil2023).
We conducted a thorough literature search across major health science databases, including PsycINFO, Medline, Embase, PubMed, and CINAHL. The search was limited to peer-reviewed studies in English, published from each database’s inception until December 2022. Eligible studies included full-text qualitative or mixed-methods research. To ensure a comprehensive search, we also examined reference lists from relevant journals, conducting grey literature searches for policy documents and reports from Australian government websites and palliative care organizations such as Palliative Care Australia, Australian Institute of Health and Welfare, and Australian Healthcare and Hospitals Association, and searched online repositories, Google, and Google Scholar.
Stage 3: study selection
We systematically compiled and uploaded the identified studies to Covidence® software (Covidence.org, n.d.). Using Covidence, we created a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flowchart (Table 1) to illustrate the study selection process. Two reviewers independently screened titles and abstracts, guided by the inclusion and exclusion criteria. We resolved conflicts arising during this process through consensus or third-reviewer arbitration, providing a clear rationale for excluded studies.
Stage 4: charting the data
The first author designed a data extraction form (Table 2) to guide the sifting, charting, and sorting of data from eligible studies. The review team developed a conceptual framework aligned with the research topic and questions to guide the extraction of descriptive data, as suggested by Levac et al. (Reference Levac, Colquhoun and O’Brien2010). After feedback and trials, the final form was adopted, capturing author details, publication country and year, study aims, methodology, participant characteristics, outcomes, and key results.
Table 2. Characteristics of the extracted studies
Stage 5: collating, summarizing, and reporting results
We used a narrative approach to collate and summarize findings that met our eligibility criteria, providing an overview of the included literature. Data from the 4 main concepts were summarized, compared, and contrasted to offer a comprehensive overview. The findings were reported narratively and discussed in relation to the review questions and objectives.
Results
The article screening process is outlined in the PRISMA flowchart (Figure 1). Initially, 79 studies were identified. After removing duplicates and exclusions, 7 studies met the inclusion criteria, comprising 6 qualitative studies and one mixed-method case study.
Fig. 1. PRISMA-ScR flowchart of study selection process.
Study characteristics
This review includes 6 studies (2010–2020) conducted in Australia (n = 2), Canada, Germany, Netherlands, United Kingdom, and United States (n = 1 each). These studies employed mixed-methods approaches to investigate palliative and end-of-life care for African migrant communities, utilizing data from semi-structured interviews, focus groups, case studies, questionnaires, and observations (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011).
Participant characteristics
The included studies referred to participants using various terms, including “Black,” “immigrants,” “migrants,” “refugees,” “ethnic minorities,” and “African.” While 2 studies specified participants’ origins as Sudanese (Sneesby et al. Reference Sneesby, Satchell and Good2011) and Turkish/Moroccan (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012), the remaining 5 studies broadly identified Africa as the participants’ origin. Participants held diverse roles within community-based palliative and end-of-life care contexts, including patients, family members, caregivers, recipients of aged care services, and home health workers. Some participants also held roles as religious or spiritual leaders, neighbors, friends, relatives, community elders, leaders, or members. A summary of the extracted data is presented in Table 2.
The review findings are organized under 4 main concepts: perceptions, preferences, and experiences of care at end-of-life; challenges to engagement with palliative care; facilitators for engagement with palliative care; and policy and procedure impact on uptake and delivery of palliative care.
Concept 1: perceptions, preferences, and experiences of care at end-of-life
Traditional and spiritual beliefs significantly shaped African migrants’ perspectives on end-of-life care. Spiritual and religious leaders, including priests, pastors, sheikhs, and traditional healers, were pivotal in guiding decisions about end-of-life care for patients and families (Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Sneesby et al. Reference Sneesby, Satchell and Good2011). Additionally, paid caregivers incorporated spirituality into their practices to help patients strengthen their relationship with God in the final stages of life (Coe Reference Coe2020).
Collectivist values and shared community identities strongly influenced attitudes toward illness management and interactions with healthcare systems (Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010). Family and community involvement in decision-making was preferred over individual autonomy, contrasting with Western ideals of maintaining individual autonomy (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Sneesby et al. Reference Sneesby, Satchell and Good2011). However, younger Sudanese migrants showed a shift toward more individualistic preferences, favoring direct communication with healthcare professionals (Sneesby et al. Reference Sneesby, Satchell and Good2011).
Family-based caregiving at home was preferred over hospital-based care, with home considered the ideal setting for end-of-life care (Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010). This preference reflected a cultural expectation among African migrant communities to care for sick relatives at home rather than utilizing acute or sub-acute care facilities (Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Sneesby et al. Reference Sneesby, Satchell and Good2011).
Sneesby et al. (Reference Sneesby, Satchell and Good2011) found that Sudanese participants viewed caring for older family members as both a privilege and a blessing. Similarly, Coe (Reference Coe2020) discovered that home healthcare workers drew upon their experiences caring for dying relatives to create meaningful end-of-life experiences for their patients. However, this preference was not universal. de Graaff et al. (Reference de Graaff, Francke and van den Muijsenbergh2012) noted that some patients, particularly Turkish and Moroccan migrants, preferred hospital-based care to alleviate caregiver burden. Furthermore, research has shown that African migrants lacking extended family support often opt for institutionalized end-of-life care (Hiruy and Mwanri Reference Hiruy and Mwanri2014; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020).
Concept 2: challenges to engagement with palliative care
African migrants faced challenges in engaging with healthcare services, including palliative care, in their host countries compared their countries of origin. Hiruy and Mwanri (Reference Hiruy and Mwanri2014) noted that navigating Western healthcare systems and limited awareness of palliative care services were key factors. For the Ethiopian migrant in their case study, palliative care services were either unknown or recently established in their home country. Similarly, Sneesby et al. (Reference Sneesby, Satchell and Good2011) found that Sudanese community members lacked awareness and experience of palliative care before emigrating.
Perceptions of Western medicine among African migrants were complex. Sudanese migrants viewed Western medicine as highly sophisticated and capable of curing various ailments (Sneesby et al. Reference Sneesby, Satchell and Good2011). In other studies, traditional medical practices, including home remedies and folk medicine, often supplemented conventional medicine for managing terminal illness (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Sneesby et al. Reference Sneesby, Satchell and Good2011). The belief in traditional remedies blurred the distinction between palliative and curative care. Trust in Western medicine was often linked to the pursuit of curative and life-saving treatments (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Sneesby et al. Reference Sneesby, Satchell and Good2011).
Skepticism about adopting Western models of palliative and end-of-life care was common. Strong beliefs in the sanctity of life led some migrants to prioritize prayer and other religious or spiritual rituals over accepting the terminal nature of their disease (Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010). Cultural norms and traditional practices, such as prayer and spiritual support, played a significant role in how migrants confronted mortality (Coe Reference Coe2020; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Sneesby et al. Reference Sneesby, Satchell and Good2011).
Beliefs and attitudes toward end-of-life care varied significantly, impacting perceptions of terminal illness, death, and dying. In 6 of the included studies, practitioners in Western countries faced challenges due to culturally and religiously constructed differences in healthcare beliefs and ethnic-cultural views when engaging with migrant patients (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; Coe Reference Coe2020; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011). These studies suggested that understanding these variations is crucial for providing care to people from diverse cultural backgrounds.
Concept 3: facilitators for engagement with palliative care
Effective communication, cultural sensitivity, and the promotion of cultural competency were common facilitators identified in the studies for engagement with palliative care services. Specifically, effective communication played a pivotal role in encouraging active participation in open and honest health and palliative care discussions (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; Coe Reference Coe2020; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011). Health professionals were encouraged to acknowledge and respect diverse cultural values and beliefs, giving equitable voices to individuals and group members within migrant communities (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Sneesby et al. Reference Sneesby, Satchell and Good2011). Additionally, shared decision-making, especially involving families or communities, was highly valued (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010).
Bridging language and cultural gaps was essential for enhancing engagement with diverse patients (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Sneesby et al. Reference Sneesby, Satchell and Good2011). These studies advocated for the active participation of both service providers and patients in joint decision-making processes to tailor end-of-life care. Training and professional development that incorporated cultural competency and inclusivity were crucial for effectively serving migrant communities (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020). Additionally, insights from workshops recommended educational initiatives that consider transcultural health beliefs within Western healthcare models to improve engagement and participation (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018). Recognizing and respecting the role of supportive family and community networks, as well as religious and spiritual beliefs, significantly influenced end-of-life care decision-making among individuals of African descent (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010).
Concept 4: policy and procedure, impact on uptake and delivery of palliative care
Disparities in accessing culturally appropriate care were highlighted, emphasizing the need for policymakers, healthcare providers, and scholars to integrate African cultural and ethical considerations into palliative care frameworks (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; Coe Reference Coe2020; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011). The reviewed studies suggested the importance of developing social and cultural competency tailored to migrant populations. Additionally, clinicians and policymakers were urged to address health challenges faced by migrants through accurate assessments and the creation of culturally safe spaces (Coe Reference Coe2020; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012). These safe spaces play an integral role in maintaining the customs and rituals of African migrants during the end-of-life phase (Maddalena et al. Reference Maddalena, Bernard and Etowa2010).
Discussion
The review examined the end-of-life care perceptions, preferences, and experiences of African migrants, highlighting the importance of cultural and religious beliefs in influencing their care choices. African migrants show a strong preference for home-based end-of-life care, influenced by cultural and religious beliefs, with families and communities playing a crucial role in supporting terminally ill relatives at home. However, language barriers, limited health literacy, and unfamiliarity with Western healthcare models hinder engagement with end-of-life care services. Furthermore, disparities in access to palliative and end-of-life care are associated with differences in ethnic-cultural backgrounds. To address these disparities, healthcare providers’ cultural competency and understanding of diverse needs are critical in bridging gaps in cultural understanding. Ultimately, policy strategies, such as targeted education campaigns and culturally sensitive care guidelines, are necessary to address healthcare disparities and provide equitable end-of-life care.
End-of-life care: preferences and experiences
African migrants show a strong preference for home-based end-of-life care, influenced by cultural and religious beliefs, values, and familial responsibilities. Families and communities play a crucial role in supporting terminally ill relatives at home rather than relying on in-patient care (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Sneesby et al. Reference Sneesby, Satchell and Good2011). Home-based care is also a transferable skill used by migrant Home Health Workers managing patients’ terminal phases within private homes (Coe Reference Coe2020). The home environment offers emotional solace during the final days, providing comfort and familiarity often absent in institutional settings. It also allows for the practice of cultural and religious rites integral to the end-of-life phase. However, despite the privacy and independence of home-based care, the lack of external clinical expertise and support remains a challenge, leading most terminally ill patients to pass away in institutional settings (Donovan et al. Reference Donovan, Williams and Stajduhar2011). The reviewed studies similarly observed that inadequate clinical capabilities within African migrants’ home-based support networks hinder handling complex medical requirements encountered during the end-of-life stage (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Sneesby et al. Reference Sneesby, Satchell and Good2011). Addressing these challenges may involve promoting community and home-based hospice programs for African migrant communities, supervised by specialized, multidisciplinary palliative care teams (Cottrell and Duggleby Reference Cottrell and Duggleby2016). Innovative technologies, such as telehealth platforms, may facilitate remote consultations and specialized clinical care from patients’ homes (Gordon et al. Reference Gordon, Mason and Smith2022; Steindal et al. Reference Steindal, Nes and Godskesen2020). However, despite these advancements, gaps persist in research on the spiritual, cultural, and ethical-legal dimensions of care, and the impact of home-based care on end-of-life outcomes (Chen et al. Reference Chen, Smits and Miranda2022; Shepperd et al. Reference Shepperd, Shepperd and Gonçalves-Bradley2021; Sinclair et al. Reference Sinclair, Auret and Evans2020).
Barriers to palliative care engagement
The review highlighted communication as a significant barrier to effective healthcare access for African migrants, especially regarding discussions about death and dying. Four studies revealed a reluctance among African migrants to openly discuss, plan, and prepare for end-of-life matters, often considering these topics taboo and sensitive (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011). Language barriers and varying health literacy levels compound this reluctance, leading to delays in care and mistrust of Western healthcare practices. In palliative and end-of-life situations, inadequate and ineffective communication between patients and physicians contributes to delayed prognosis assessment and end-of-life care discussions, often occurring when patients are already nearing the end of life (Lowey Reference Lowey2015).
Research has consistently found that language differences, limited health literacy, and unfamiliarity with Western healthcare models hinder engagement with end-of-life care services among minority ethnic groups (Barwise et al. Reference Barwise, Jaramillo and Novotny2018; Gerber et al. Reference Gerber, Maharaj and Brijnath2020; Shabnam et al. Reference Shabnam, Timm and Nielsen2022). Migrants with lower health literacy and limited English proficiency may develop misconceptions about palliative care. These factors create communication challenges with healthcare teams, disadvantaging migrants during care-seeking and treatment (Cappa and Canevelli Reference Cappa, Canevelli, Alaoui-Faris, Federico and Grisold2022; Sze et al. Reference Sze, Butow and Bell2015). Practitioners may hesitate to discuss end-of-life care due to concerns about effective communication and patient understanding, inhibiting open discussions in palliative and end-of-life contexts. Addressing these issues is crucial to ensure equitable and sensitive healthcare delivery in multicultural settings.
Enablers of palliative care engagement
The review found that disparities in access to palliative and end-of-life care for CALD groups were associated with differences in ethnic-cultural backgrounds (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Sneesby et al. Reference Sneesby, Satchell and Good2011). This aligns with WHO observations that migrant status is often linked to impaired health and poorer access to health services (World Health Organisation 2010).
In their study of African Canadians in Nova Scotia, Maddalena et al. (Reference Maddalena, Bernard and Etowa2010) highlighted how racism, marginalization, and historical exclusion by healthcare institutions impact African and other minority patients, contributing to disparities in accessing culturally appropriate palliative and end-of-life care. Discrimination and disadvantage manifest in various forms, such as unequal treatment, lack of cultural competency among providers, and systemic biases affecting the quality of care for socially defined groups (Krieger Reference Krieger2001). These challenges are common among other minority religious, ethnic, and racial groups disproportionately affected by social and health inequalities (Gerber et al. Reference Gerber, Maharaj and Brijnath2020; McAuliffe and Triandafyllidou Reference McAuliffe and Triandafyllidou2022; Omenka et al. Reference Omenka, Watson and Hendrie2020; Renzaho Reference Renzaho2023; Spelten et al. Reference Spelten, MacDermott and Morgan2021). Recent studies have highlighted significant disparities in healthcare access among racial and ethnic minorities, uncovering extensive inequalities, yet research into disparities in palliative care remains scarce within the broader healthcare sector (Adsersen et al. Reference Adsersen, Thygesen and Kristiansen2023; Johnson and Rhodes Reference Johnson and Rhodes2016; Roydhouse et al. Reference Roydhouse, Connolly and Daveson2023).
Despite the increasing numbers of migrants in many Western nations, many of whom are aging and dying in a globalized and multicultural context, research into their end-of-life preferences is limited (Gerber et al. Reference Gerber, Maharaj and Brijnath2020; McAuliffe and Triandafyllidou Reference McAuliffe and Triandafyllidou2022). To mitigate these disparities and enhance culturally appropriate care, the reviewed studies suggested several recommendations. These include actively engaging with African migrant communities to understand their unique perspectives and preferences, advocating for policy changes to ensure equitable access to palliative and end-of-life care, and providing targeted training to enhance healthcare providers’ cultural competency and understanding of diverse needs (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020). Additionally, conducting well-funded, targeted, and culturally sensitive research that considers cultural and religious preferences can guide stakeholders and enhance migrant and minority health, including end-of-life care (El Alaoui-Faris Reference El Alaoui-Faris, Alaoui-Faris, Federico and Grisold2022; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Renzaho et al. Reference Renzaho, Polonsky and Mellor2016). The WHO has also advocated for primary research investments to disaggregate health data by subpopulation for equitable care (World Health Organisation 2018). Other studies suggest that research should differentiate migrant groups based on their unique religious, ethnic, or cultural backgrounds to avoid homogenizing them and generalizing their health status (Grisold and Grisold Reference Grisold, Grisold, Alaoui-Faris, Federico and Grisold2022; Venters and Gany Reference Venters and Gany2011).
The review identified general limitations in participants’ awareness of Western end-of-life and palliative care advantages, which influenced their perceptions and experiences (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010). The reviewed studies stressed the importance of healthcare providers enhancing their cultural competencies by appreciating diverse experiences, accommodating differences, and aligning practices to meet the cultural needs and expectations of racial and ethnic communities. These studies also show that migrants are often unfamiliar with end-of-life planning processes common in Western societies, such as preparing advance care directives (de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011).
By recognizing and addressing biases, understanding patients’ cultural backgrounds, and delivering respectful and responsive care, practitioners can bridge gaps in cultural understanding (Aldridge and Kutner Reference Aldridge, Kutner, Kelley and Meier2014; Cherny Reference Cherny2009). Additionally, healthcare professionals can mitigate cultural misunderstandings and improve access and utilization of services for minority patients in palliative care settings through open dialogue about their varied healthcare needs and preferences (Gerber et al. Reference Gerber, Maharaj and Brijnath2020). Promoting inclusive healthcare environments can enhance cultural safety, foster cultural identity, and enrich end-of-life experiences for migrant and ethnic patients and their families, contributing to a more equitable care landscape. Although challenging in the short term, educating healthcare workers on ethnic health belief diversities, behaviors, and preferences is a step toward reducing disparities in health outcomes between migrants and native populations, ensuring culturally respectful and empathetic end-of-life care (Agyemang and Van Den Born Reference Agyemang and Van Den Born2019).
Policy and procedure
The Australian National Palliative Care Strategy 2018 provides a crucial framework for developing and implementing palliative care policies, strategies, and services in Australia (Department of Health and Aged Care 2019). However, while this policy initiative is broadly relevant to the review’s topic, its generalizability is limited due to the diverse social contexts and unique characteristics of these populations. Migrant populations exhibit significant heterogeneity, differing in legal status, cultural background, language, and socio-economic conditions (OECD 2019). This diversity substantially impacts their integration experiences and needs, underscoring the importance of considering this heterogeneity in policy-making and social integration efforts.
The reviewed studies proposed several policy strategies to address healthcare disparities and better support patients and families. These strategies include targeted education campaigns, improved language translation and interpretation services for non-English speaking migrants, and culturally sensitive care guidelines for healthcare practitioners (Ben-Arye et al. Reference Ben-Arye, Bonucci and Daher2018; Coe Reference Coe2020; de Graaff et al. Reference de Graaff, Francke and van den Muijsenbergh2012; Hiruy and Mwanri Reference Hiruy and Mwanri2014; Maddalena et al. Reference Maddalena, Bernard and Etowa2010; Nyashanu et al. Reference Nyashanu, Mbalinda and Mushawa2020; Sneesby et al. Reference Sneesby, Satchell and Good2011).
Limitations and strengths
This scoping review encountered several methodological limitations. Despite employing a comprehensive search strategy, some relevant published and unpublished literature might have been missed. Additionally, limiting the inclusion to English-language studies potentially excluded important non-English research. The review was also constrained by the limited availability of grey literature specifically addressing African migrant populations and the phenomenon of interest.
However, this review also has notable strengths. Prioritizing peer-reviewed studies ensured the inclusion of high-quality research, which generally demonstrates higher validity compared to non-peer-reviewed sources (Conn et al. Reference Conn, Valentine and Cooper2003). The exclusion of grey literature, due to concerns about methodological rigor and reliability, further enhanced the review’s findings (Shrivastava and Mahajan Reference Shrivastava, Mahajan, Gupta and O’Connor2021). Moreover, requiring peer review and critical evaluation by field experts ensured adherence to standards of quality, validity, and reliability (Shamseer et al. Reference Shamseer, Moher and Clarke2015).
To ensure methodological rigor, we used a triangulated study selection and data extraction process. Two independent reviewers conducted these processes, with any discrepancies resolved by a third reviewer. Additionally, to enhance reliability, transparency, and validity, we documented post-protocol amendments, as recommended by Moher et al. (Reference Moher, Liberati and Tetzlaff2009) and Tricco et al. (Reference Tricco, Lillie and Zarin2018). Specifically, we revised the review’s title, research questions, and inclusion/exclusion criteria to incorporate the descriptive elements of the PCC mnemonic.
We also adopted a deductive data analysis method post-protocol, constructing a conceptual framework utilized to analyze the included studies and anticipate the presence of predetermined concepts (Azungah Reference Azungah2018). This review adhered to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review guidelines for transparent reporting (Tricco et al. Reference Tricco, Lillie and Zarin2018), ensuring a systematic and comprehensive examination of the existing literature.
Conclusion
This review highlights a significant gap in understanding the palliative care needs of migrants, particularly within the African migrant cohort. Factors such as reluctance to discuss death, linguistic barriers, and varying health literacy levels may contribute to care delays and inequities. While conventional Western palliative care may suit most patients, it often clashes with the cultural and ethical expectations of migrant and ethnic minority groups (Grisold and Grisold Reference Grisold, Grisold, Alaoui-Faris, Federico and Grisold2022), including their preference for home-based care. Research also shows that racial and ethnic minorities disproportionately underutilize palliative care services, leading to prolonged aggressive therapies (Smith and Brawley Reference Smith, Brawley, Kelley and Meier2014). Improving awareness and literacy may enhance acceptance of Western palliative care models. Additionally, enhancing cultural competency among healthcare practitioners is essential for equitable, culturally responsive healthcare.
African migrants remain underrepresented in health research, with their diverse ethnic heterogeneity, cultural, and religious practices often overlooked (Addo Reference Addo2022; Arthur et al. Reference Arthur, Takougang and Owusu2012; Renzaho et al. Reference Renzaho, Polonsky and Mellor2016). To address this, focused, culturally sensitive research is needed to inform and maintain a sustained dedication to understanding the cultural determinants shaping health and illness perceptions and experiences (El Alaoui-Faris Reference El Alaoui-Faris, Alaoui-Faris, Federico and Grisold2022), including in end-of-life stages.
Appendix A: Inclusion and exclusion criteria for article selection
Appendix B: Search strategy and results for CINAHL database
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