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Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography.

ABSTRACT: BACKGROUND:People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care. AIM:To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach. DESIGN:Systematic interpretive exploration using the process of meta-ethnography was utilised. DATA SOURCES:CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme. RESULTS:The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.

SUBMITTER: De Souza J

PROVIDER: S-EPMC7000852 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography.

De Souza Joanna J Gillett Karen K Froggatt Katherine K Walshe Catherine C

Palliative medicine 20200122 2

<h4>Background</h4>People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care.<h4>Aim</h4>To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, a ...[more]

PMID: 31965907

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Project description:Objectives To explore the perspectives of ethnic minority community leaders in relation to: the impact of the COVID-19 pandemic on their communities; and their community’s perception, understanding and adherence to government guidelines on COVID-19 public health measures. Design A phenomenological approach was adopted using qualitative semistructured interviews. Settings Community organisations and places of worships in the West Midlands, England. Participants Community leaders recruited through organisations representing ethnic minority communities and religious places of worship. Results A total of 19 participants took part. Participants alluded to historical and structural differences for the observed disparities in COVID-19 morbidity and mortality. Many struggled with lockdown measures which impeded cultural and religious gatherings that were deemed to be integral to the community. Cultural and social practices led to many suffering on their own as discussion of mental health was still deemed a taboo within many communities. Many expressed their community’s reluctance to report symptoms for the fear of financial and physical health implications. They reported increase in hate crime which was deemed to be exacerbated due to perceived insensitive messaging from authority officials and historical racism in the society. Access and adherence to government guidelines was an issue for many due to language and digital barriers. Reinforcement from trusted community and religious leaders encouraged adherence. Points of support such as food banks were vital in ensuring essential supplies during the pandemic. Many could not afford or have access to masks and sanitisers. Conclusion The study highlights the perceived impact of the COVID-19 pandemic on ethnic minority communities. Government agencies and public health agencies need to integrate with the community, and community leaders can enable dissemination of key messages to deliver targeted yet sensitive public health advice which incorporates cultural and religious practices. Addressing the root causes of disparities is imperative to mitigate current and future pandemics.

Project description:OBJECTIVE:To explore graduate-entry medical students experiences of undergraduate training in the context of academic underperformance of medical students from ethnic minority backgrounds. DESIGN:Qualitative study using semi-structured focus groups. SETTING:A West Midlands medical school. PARTICIPANTS:24 graduate-entry MBChB students were recruited using volunteer and snowball sampling; all students self-identified as being from Black and Minority Ethnic (BME) backgrounds. RESULTS:BME students reported facing a range of difficulties, throughout their undergraduate medical training, that they felt impeded their learning and performance. Their relationships with staff and clinicians, though also identified as facilitators to learning, were also perceived to have hindered progress, as many students felt that a lack of BME representation and lack of understanding of cultural differences among staff impacted their experience. Students also reported a lack of trust in the institution's ability to support BME students, with many not seeking support. Students' narratives indicated that they had to mask their identity to fit in among their peers and to avoid negative stereotyping. Although rare, students faced overt racism from their peers and from patients. Many students reported feelings of isolation, reduced self-confidence and low self-esteem. CONCLUSIONS:BME students in this study reported experiencing relationship issues with other students, academic and clinical staff, lack of trust in the institution and some racist events. Although it is not clear from this small study of one institution whether these findings would be replicated in other institutions, they nevertheless highlight important issues to be considered by the institution concerned and other institutions. These findings suggest that all stakeholders of graduate-entry undergraduate medical education should reflect on the current institutional practices intended to improve student-peer and student-staff relationships. Reviewing current proposals intended to diversify student and staff populations as well as evaluating guidance on tackling racism is likely to be beneficial.

Project description:BackgroundResearch in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person's sense of autonomy and control, and it appears to be related to patients' quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.MethodsWe conducted a systematic review and meta-ethnography using reciprocal translation and line-of-argument synthesis. The search strategy used MeSH terms in combination with free-text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane databases, from their inception until 2015. This identified 186 articles, after excluding duplicates. The inclusion criterion was primary qualitative studies in which dignity, autonomy and control at the end of life were explored. Studies were evaluated using the CASP guidelines.ResultsTwenty-one studies recording the experiences of 400 participants were identified. Three themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of control; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity, understood as the desire for control over the dying process and the desire for self-determination. We propose an explanatory model which highlights that those patients with an intrinsic sense of dignity maintained a positive view of themselves in the face of their illness.ConclusionThis synthesis illustrates how dignity and autonomy are intertwined and can be perceived as a multidimensional concept, one that is close to the notion of personal identity. The ability to regard dignity as an intrinsic quality has a positive impact on patients, and the design of care strategies should take this into account.

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Project description:ContextInterprofessional collaboration is recommended in caring for frail older adults in primary care, yet little is known about how interprofessional teams approach end-of-life (EOL) conversations with these patients.ObjectiveTo understand the factors shaping nurses' and allied health clinicians' involvement, or lack of involvement in EOL conversations in the primary care of frail older adults.Methods/settingA critical ethnography of a large interprofessional urban Family Health Team in Ontario, Canada. Data production included observations of clinicians in their day-to-day activities excluding direct patient care; one-to-one semi-structured interviews with clinicians; and document review. Analysis involved coding data using an interprofessional collaboration framework as well as an analysis of the normative logics influencing practice.ParticipantsInterprofessional clinicians (n = 20) who cared for mildly to severely frail patients (Clinical Frailty Scale) at the Family Health Team.ResultsFindings suggest primary care nurses and allied health clinicians have the knowledge, skills, and inclination to engage frail older adults in EOL conversations. However, the culture of the clinic prioritizes biomedical care, and normalizes nurses and allied health clinicians providing episodic task-based care, which limits the possibility for these clinicians' engagement in EOL conversations. The barriers to nurses' and allied health clinicians' involvement in EOL conversations are rooted in neoliberal-biomedical ideologies that shapes the way primary care is governed and practiced.ConclusionsOur findings help to explain why taking an individual-level approach to addressing the challenge of delayed or avoided EOL conversations, is unlikely to result in practice change. Instead, primary care teams can work to critique and redevelop quality indicators and funding models in ways that promote meaningful interprofessional practice that recognize the expertise of nursing and allied health clinicians in providing high quality primary care to frail older patients, including EOL conversations.

Dataset Information

Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography.

Publications

Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography.

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