Healthcare equity remains a pressing concern, particularly for ethnic minority communities who face distinct challenges within the healthcare system. As the world strives to address healthcare disparities, it is essential to understand these communities' lived experiences and barriers (Scobie, 2023; Stone, 2023).
The patient and public involvement (PPI) project discussed in this article involved consulting with older individuals from the Black ethnic minority group African Community Advice North East (ACANE) on their experiences of care. It ran from March 2022 to July 2023, with funding from the National Institute for Health and Care Research.
The author's initial aim had been to explore the lived experience of older adults aged over 65 years from ethnic minority backgrounds with capacity and their carers, with a focus on general decision-making in care homes in the Northeast of England, and to look at care giving, healthcare decision-making and access to care.
However, after liaison with different stakeholders, no older residents could be accessed in the care homes. The author therefore liaised with ACANE's community leader to consult with the community's older members.
The difficulty in accessing older people from ethnic minorities living in care homes led the author to switch the focus of his community-immersed PPI to investigating why these communities are not present in care-home settings in the Northeast region.
The principal challenges identified from the findings were cultural sensitivity, communication barriers, and the complexities of care giving, which served to highlight the reluctance of ethnic minorities to use care homes due to cultural norms and inadequate culturally appropriate care options.
Key findings from this work underscore the importance of cultural sensitivity (Phillips and Andriopoulou, 2022), decision-making and collaboration to improve healthcare outcomes for these populations.
Cultural sensitivity in health care
Cultural sensitivity is a critical factor in healthcare decision-making and patient care, particularly for racially minoritised communities. During discussions with elderly African community members in Newcastle upon Tyne, it became apparent that family care giving is deeply rooted in cultural values. Participants emphasised the importance of keeping elderly relatives at home rather than placing them in care homes; care home use may be viewed as inconsistent with their cultural norms.
Cipta et al (2024) discussed the importance of communal collaboration, mutual assistance and family involvement in decision-making in Indonesian culture, but this did not cover familial involvement in care provision. This communal approach to care giving reflects a strong reliance on family support, a value that is often at odds with the healthcare model predominantly seen in Western societies.
The project highlighted the urgent need for healthcare providers to develop a deeper understanding of these cultural nuances. Incorporating cultural competency training into healthcare settings would not only improve patient care, but would also foster a more inclusive environment. By acknowledging and respecting the cultural beliefs of ethnic minority patients, healthcare providers can build trust and deliver care that is more aligned with the values and preferences of these communities.
Challenges in accessing health care
The project's discussions revealed significant challenges that ethnic minority communities face when accessing health care.
In a study by Brooks et al (2019), many participants cited communication barriers and a lack of information about available services as key obstacles to receiving appropriate care. For instance, language barriers were a recurring theme, with some participants needing interpreters to communicate their healthcare needs effectively. The lack of culturally sensitive care in care homes, such as the absence of culturally appropriate foods and culturally relevant activities, further exacerbates these challenges.
One poignant finding from the project was participants' sense of being left out of the decision-making process regarding their health care, which contradicts the assertion of Stubbe (2020), who emphasised the importance of involving patients in the decision-making process regarding their treatment. Although participants in the author's project expressed a willingness to make decisions about their care, there were instances when they were not adequately informed about treatment changes.
These issues were exacerbated during the COVID-19 pandemic when lockdown measures made accessing medical treatment even more difficult. The project found that the pandemic had also heightened anxieties about seeking care, further complicating an already challenging healthcare landscape for these communities.
The care-giver experience and its complexities
Care giving in ethnic minority communities, especially among African families, is often seen as a familial duty, placing a heavy emotional, isolation, burnout, physical (Duncan and Smith, 2024) and financial burden on care-givers, particularly when caring for elderly relatives with disabilities.
Lauwers et al (2024) warned that some cultures value family involvement over patient autonomy. Despite existing external support systems, many care-givers struggle to access the necessary services, with some being outright denied support, underscoring the need for care that is more accessible and responsive to the needs of ethnic minority care-givers.
Duncan and Smith (2024) highlight the need for a tailored support services that acknowledge and respect the cultural values surrounding familial duty. Policies offering financial help and respite care would significantly alleviate the strain on these families.
Cultural challenges in care homes
A central theme that was identified as part of the project was participants' reluctance to consider care homes as an option for elderly relatives (Suurmond et al, 2016). Concerns about cultural sensitivity within care homes were prevalent, with participants expressing doubts about whether these institutions could accommodate their relatives' cultural preferences and communal values.
Chamberlain et al (2024) discussed that the reluctance in choosing care home stems from the challenges of accessing culturally appropriate care, long waiting lists for culturally specific homes, language barriers affecting quality of care, limited culturally sensitive food options, and religious support in mainstream facilities.
The need for culturally sensitive food options and the incorporation of cultural practices in care homes were emphasised as essential in potentially making these institutions more acceptable to ethnic minority families, as was suggested by Nair et al (2022).
The discussions with project participants also revealed that, for many, the concept of placing elderly relatives in care homes remains deeply stigmatised. This sentiment is rooted in the belief that care giving is a familial responsibility, and placing a relative in a care home might be seen as neglecting that duty.
Gulestø et al (2023) suggested that family care-givers from minority ethnic backgrounds may resist care homes due to cultural values, organisational limitations and differing mindsets, impacting their adjustment to home-based care services for relatives with dementia.
However, some participants noted that perspectives could change over time, particularly as the younger generations in the Northeast, who may be more open to the idea of care homes, reach old age. This is supported by Ikeorji and Warria (2024) who discussed the changes taking place in the caregiving landscape for older persons in Africa and the need for a paradigm shift towards a robust and integrative care system globally. This generational shift, while slow, offers a potential pathway to more culturally sensitive care options in the future.
Recommendations
Addressing these challenges requires targeted interventions such as cultural sensitivity training for healthcare staff, improved communication, and policy changes to make care homes more culturally inclusive. Collaborative efforts with community organisations are essential for fostering better care outcomes.
The recommendations arising from the findings of the project include providing cultural sensitivity training for healthcare staff, integrating cultural competency into care plans, offering culturally sensitive meal options across care sector organisations, and accommodating cultural practices in care homes to create a more inclusive environment for ethnic minority residents. Additionally, partnerships with community organisations, improved access to interpreters, and ongoing research to guide policy changes are essential for addressing gaps in care and planning for future healthcare needs within these communities.
The project's insights highlight the critical need for cultural sensitivity, collaboration, and policy advocacy to improve healthcare outcomes for ethnic minority communities. Evolving healthcare systems must be inclusive and responsive to diverse populations, fostering cultural competency to create environments that respect and accommodate the preferences of ethnic minority patients, ultimately leading to a more equitable healthcare system.