Whilst arts-based approaches are not free from risk, they offer an alternative form of knowledge as a necessary complement to the range of data available to policy makers.
Purpose – Drawing findings from a large mixed-method study on perceptions of dignity, care expectations, and support in relation to older women from Black and minority-ethnic backgrounds, the purpose of this paper is to explore the interrelationships between life course events and the multiple roles adopted by women at different points in time that have shaped their perceptions of care and their care expectations in old age. Design/methodology/approach – In total, 32 semi-structured interviews were undertaken, allowing for the collection of data on the participants’ understanding of growing old, and the meaning and attributes of care and what care with dignity “looked and felt like”. The theoretical framework is guided by a life-course approach and grounded within an intersectionality perspective. The majority of the participants were migrants. Findings – Social markers such as ethnicity and cultural identity were found to influence the participants’ understanding and expectations of care with factors such as gender identity and integration in the local community also of importance. How women felt they were perceived and “recognised” by others in their everyday lives with particular focus at the time of old age with the increased potential of loss of dignity due to declining capabilities, raised the importance of the family involvement in care provision, and perceived differences in the attributes of paid and non-paid care. The notion of “care from the heart” emerged as a key attribute of care with dignity. Care with dignity was understood as a purposeful activity, undertaken with intent to show respect and to acknowledge the participants’ sense of worth and value. Practical implications – The implications of this study are relevant in the current debate taking place at the EU level about the lived experiences of ageing migrant groups and care expectations. Originality/value – The study highlights the importance of the social nature of dignity, how wider societal structures can impact and shape how care is understood for older women of migrant and minoritised backgrounds, and the need to explore migration and care across the life course.
Purpose – Research evidence indicates the need for studies that explore the salience of dignity from the perspective of older people from a range of ethno-linguistic and cultural backgrounds. Drawing findings from a mixed-methods study on social-care expectations of community-dwelling older women from black and minority-ethnic backgrounds, the purpose of this paper is to explore the interrelationships between life-course events (such as migration) and the roles adopted by the women throughout their lives, which shaped their understanding of dignity. Design/methodology/approach – Face-to-face, semi-structured interviews with 32 older women in Wales were conducted in the participants’ first languages. The interview schedule was developed, piloted and peer-reviewed; it covered the themes of migration, perceptions of dignity, dignity in later life, perceptions of care and care with dignity. Transcripts were analysed using thematic analysis. This paper focuses on what dignity meant to older women and how a sense of dignity was fostered in later life. Findings – For the participants, a sense of dignity in later life was shaped by migration to the UK, and their shifting, transnational understanding of growing old in the UK and of the perceived worth and value of the roles they played. Although some women also saw other platforms (such as work and their status as professionals) as being of importance, a sense of purpose fostered in their roles as wives, mothers and grandmothers, and as mentors and guardians of cultural knowledge, underpinned their understanding of dignity, and reinforced their sense of acknowledgement and worth. Fostered from an early age through interactions with the family and close community (religious, cultural or ethnic), respect for older people was revealed to remain a key element of the participants’ personal and cultural value systems, as were the ways in which respect should be both earned and manifested. The sense of heightened vulnerability, because of advancing age, and the impact of cumulative negative encounters and racialised micro-aggressions, were real and pressing. Practical implications – Given the changing demographic of the older population throughout Europe and the world, there is a need to raise awareness among policy makers and practitioners of the importance of dignity from a range of perspectives – providing first-hand accounts that bring these to life, and data that can be used to help develop effective interventions. Originality/value – This paper adds to the understanding of dignity from a transnational, multi-ethnic perspective; the potential impact of multiple social positions (being old, being a woman, being a migrant and being from a minority-ethnic group) on the perception of being treated and regarded as important and valuable; and the need to raise awareness among policy makers and practitioners of the importance of dignity from a range of perspectives, providing first-hand accounts that bring these to life and that can be used to help develop effective social-care interventions.
Genomic knowledge and technology have developed rapidly over the last decade and increased our capabilities to diagnose and manage rare diseases. However, current genomic datasets lack ethnic diversity as many genomic studies have focused on participants of white European ancestry. Studies, such as the Deciphering Developmental Disorders study, have been available to participants of any ancestry but have been unsuccessful in recruiting diverse populations. The inclusion of diverse populations in exome and genome sequencing is important to ensure that clinical benefits of genomics advances are equally shared among all populations and to advance scientific knowledge. Our clinical and research experience with the British Pakistani population (the largest ethnic minority in Yorkshire and Humber, accounting for 4.3% of the population) has fostered the development of an innovative cultural competence framework to enhance the inclusion of diverse populations in clinical genomic research and service provision. The application of this framework has the potential to guide healthcare professionals to develop a wide range of competences, so they are ready to embrace genomic advances in order to improve health outcomes for all patients. This practice model will inform precision medicine and improve access of diverse populations to genomic studies. Although based upon work with the Pakistani population in the UK, it is anticipated that the model would be broadly applicable to all underrepresented populations across the world.
ObjectiveTo identify ethnic differences in proportion positive for SARS-CoV-2, and proportion hospitalised, proportion admitted to intensive care and proportion died in hospital with COVID-19 during the first epidemic wave in Wales.DesignDescriptive analysis of 76 503 SARS-CoV-2 tests carried out in Wales to 31 May 2020. Cohort study of 4046 individuals hospitalised with confirmed COVID-19 between 1 March and 31 May. In both analyses, ethnicity was assigned using a name-based classifier.SettingWales (UK).Primary and secondary outcomesAdmission to an intensive care unit following hospitalisation with a positive SARS-CoV-2 PCR test. Death within 28 days of a positive SARS-CoV-2 PCR test.ResultsUsing a name-based ethnicity classifier, we found a higher proportion of black, Asian and ethnic minority people tested for SARS-CoV-2 by PCR tested positive, compared with those classified as white. Hospitalised black, Asian and minority ethnic cases were younger (median age 53 compared with 76 years; p<0.01) and more likely to be admitted to intensive care. Bangladeshi (adjusted OR (aOR): 9.80, 95% CI 1.21 to 79.40) and ‘white – other than British or Irish’ (aOR: 1.99, 95% CI 1.15 to 3.44) ethnic groups were most likely to be admitted to intensive care unit. In Wales, older age (aOR for over 70 years: 10.29, 95% CI 6.78 to 15.64) and male gender (aOR: 1.38, 95% CI 1.19 to 1.59), but not ethnicity, were associated with death in hospitalised patients.ConclusionsThis study adds to the growing evidence that ethnic minorities are disproportionately affected by COVID-19. During the first COVID-19 epidemic wave in Wales, although ethnic minority populations were less likely to be tested and less likely to be hospitalised, those that did attend hospital were younger and more likely to be admitted to intensive care. Primary, secondary and tertiary COVID-19 prevention should target ethnic minority communities in Wales.
PurposeThe purpose of this paper is to report on a qualitative exploratory study conducted in Wales to explore what dignity and care mean from the perspectives of men and women aged 50 years and older who self‐identified as being either African‐Caribbean/West Indian, or Black Welsh (third‐ or fourth‐generation, with links to Africa or the Caribbean).Design/methodology/approachTwenty‐one semi‐structured interviews were undertaken, allowing for the collection of data on the participants' understanding of dignity (what it is, and what it “looks and feels like”) and of care.FindingsDignity and respect for older people are revealed to be key aspects of the participants' personal value systems. The notion of care is understood as “caring about” and is seen to be a key indicator of dignity. Moreover, both care and dignity were understood and, for many of the participants, were both conceptualised on a personal basis and shaped by a sense of identity that was, in part and to varying extents, communally mediated and rooted in a cultural collectivistic value orientation. The findings also reveal the intersections of care and minority ethnicity, and how – to varying extents – these intersections shape the participants' perceptions of how they are recognised and acknowledged in encounters where dignity is especially important, such as in the receiving of care. With these perceptions come various levels of engagement, avoidance or acceptance of the need for extra care or support.Originality/valueExploratory in nature, this study investigates the importance of paying attention to the impact that cultural and ethnic identity (and accompanying belief systems) may have on how notions of dignity and of care (both personal and communally mediated) are understood. It seeks to contribute to the body of evidence on ways of working with “seldom‐heard” groups and the importance of building trust and establishing long‐term, community‐based research networks.
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