Traditional Gender Roles and Effects of Dementia Caregiving within a South Asian Ethnic Group in England.

BACKGROUND: Despite the integral role that women play in the care of older adults in South Asian families, limited empirical data are available on the impact of migration from South Asia to England. The purpose of this research was to examine caring for a family member with dementia from a gender role perspective. METHODS: Data were gathered in two phases: (1) focus groups and (2) semi-structured interviews. Focus groups were held with the general public, and semi-structured interviews were conducted with family carers. Data were audio-recorded and analysed using thematic analysis. The NVivo qualitative software was utilised to simplify the thematic analysis. RESULTS: While traditionally family care for frail older adults has been mainly provided by women in South Asian families, the samples in this study revealed how women's attitudes towards caregiving are changing in British societies. CONCLUSION: There is a dearth of research about socioeconomic transformations in South Asian women's migration to Western countries that could contribute to deterring them from providing family care. More research is warranted to understand the ways in which migration shapes gender relations in South Asian families and its impact on care for the frail elderly.

Dementia Knowledge and Attitudes of the General Public among the Bangladeshi Community in England: A Focus Group Study.

BACKGROUND: Increasing life expectancy worldwide means more people will develop dementia. Despite the rapid growth in older Bangladeshi immigrants living in the UK, there is little evidence of how community members understand and view the process of ageing and dementia. However, Bangladeshis have a higher risk of developing type 2 diabetes and heart disease, both of which are important indicators of dementia development in old age. This study aimed to explore and analyse the perception and knowledge of, and attitudes towards, ageing and dementia among the Bangladeshi community. METHODS: A qualitative research approach guided two separate focus group discussions held with Bangladeshi adults in Portsmouth, UK. A topic guide was used alongside two vignettes depicting either early- or late-stage dementia to stimulate discussion. The data were recorded, transcribed, and analysed thematically using NVivo qualitative software. RESULTS: Three main themes emerged: (1) knowledge and perceptions of dementia; (2) perceived causes of dementia; and (3) perceptions of stigma about dementia. Lack of knowledge and understanding of dementia was evident, but the stigma about dementia was non-existent. This study fills a research gap by providing qualitative research examining knowledge about and attitudes towards dementia among a Bangladeshi community in England. CONCLUSION: Future research must highlight the importance of raising dementia awareness among, and providing information about dementia caregiving to, Bangladeshi community members, as well as providing religiously sensitive healthcare services.

Dementia and revivalist Islam: New perspectives to understanding dementia and tackling stigma.

The notion of stigma and its influence on the understanding of dementia has commonly been recognized as a great challenge to seeking healthcare services for South Asians in England. The aim of this commentary is to examine how Muslims view, understand and tackle dementia stigma in the context of revivalist Islam, especially among Bangladeshi Muslims within their British communities. This article reflects on the interrelationship between dementia and revivalist Islam among Bangladeshi family caregivers and addresses the question of how revivalist Islam is a significant source of understanding dementia and tackling stigma. Bangladeshi caregivers show a practical attitude toward dementia which is generally acknowledged as a medical symptom, and for which family caregivers voluntarily seek healthcare support. This piece highlights underlying principles of caregivers religious beliefs in the acceptance of dementia as a disease, and in help-seeking which is influenced by Qur'anic verses and Prophetic traditions. Bangladeshi caregivers' religious beliefs intertwine with their knowledge, perception, and attitudes toward caregiving for their relatives with dementia. Revivalist Islam offers family caregivers an opportunity to explore their inner wisdom through the challenging journey of caregiving for their family members with dementia.

Clinicians' and patients' experiences of managing heart failure during the COVID-19 pandemic: a qualitative study.

BACKGROUND: Severe acute respiratory coronavirus 2 (SARS-CoV-2), also known as coronavirus disease 2019 (COVID-19), resulted in unprecedented societal and healthcare provision change, which has been implemented at pace. Little is known about the indirect impacts of these changes and what the future effects may be. AIM: To explore patients' and clinicians' experiences of managing heart failure (HF) during the COVID-19 pandemic. DESIGN & SETTING: Qualitative study in three regions of the UK: Cambridgeshire, Greater Manchester, and the West Midlands. METHOD: Semi-structured interviews (n = 30) were conducted with older adults with established HF and healthcare providers from primary and secondary health services involved in their care. Interviews were analysed thematically. RESULTS: Compliance with the government guidance 'Stay at home, protect the NHS, and save lives' during the COVID-19 pandemic, and perceptions relating to risk from COVID-19 and underlying morbidity, drove 'being careful' behaviours and organisational changes. Enacting behavioural change and implementing organisational change resulted in opportunities and challenges for health and healthcare practice. CONCLUSION: Perception of risk led to significant behavioural and organisational change during the pandemic. Some changes described by both patients and clinicians, such as enhanced relationships and self-monitoring, present as opportunities, and consideration should be given as to how to maintain or develop these. Equally, indirect impacts of COVID-19 and the associated lockdown, such as disengagement and withdrawal, and the fallout from reluctance to access health services, should be acknowledged and interventions to address these challenges are needed.

Dementia in the Bangladeshi diaspora in England: A qualitative study of the myths and stigmas about dementia.

RATIONALE, AIMS AND OBJECTIVES: Although Bangladeshis are three times more likely to be carers than White British, Bangladeshi family carers are the most deprived, neglected, and effectively a hidden group in the United Kingdom.1 There is a paucity of research within the Bangladeshi community that is capable of explaining and predicting the experiences and concerns of Bangladeshi family carers providing care for their relatives with dementia. The purpose of this study is to explore the perspectives of Bangladeshi family carers' knowledge and day-to-day experiences living in England. METHODS: This is a qualitative study involving semistructured face-to-face interviews with six Bangladeshi family carers living in London and Portsmouth. Interviews were recorded with the consent and transcribed verbatim. Data were managed by using NVivo software, and thematic analysis was performed. RESULTS: This paper explores that most carers have a lack of knowledge and awareness of the symptoms of dementia. The results of this study are in contrast to previous studies, where South Asian carers perceived dementia as being possessed by evil spirits or God's punishment for previous life's sins; this study reveals that Bangladeshi family carers believed dementia was a medical condition. Unlike earlier South Asian studies, however, all family carers in this study also believed that there was no stigma attached to dementia. CONCLUSIONS: Further research is warranted to investigate the religious beliefs, familism, and interpersonal motives as theoretical perspectives to explain how Bangladeshi family carers negotiate and construct their caregiving roles for their relatives with dementia.

Optimising Management of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care (OPTIMISE-HFpEF): rationale and protocol for a multi-method study.

BACKGROUND: Heart failure with preserved ejection fraction (HFpEF) is less well understood than heart failure with reduced ejection fraction (HFrEF), with greater diagnostic difficulty and management uncertainty. AIM: The primary aim is to develop an optimised programme that is informed by the needs and experiences of people with HFpEF and healthcare providers. This article presents the rationale and protocol for the Optimising Management of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care (OPTIMISE-HFpEF) research programme. DESIGN & SETTING: This is a multi-method programme of research conducted in the UK. METHOD: OPTIMISE-HFpEF is a multi-site programme of research with three distinct work packages (WPs). WP1 is a systematic review of heart failure disease management programmes (HF-DMPs) tested in patients with HFpEF. WP2 has three components (a, b, c) that enable the characteristics, needs, and experiences of people with HFpEF, their carers, and healthcare providers to be understood. Qualitative enquiry (WP2a) with patients and providers will be conducted in three UK sites exploring patient and provider perspectives, with an additional qualitative component (WP2c) in one site to focus on transitions in care and carer perspectives. A longitudinal cohort study (WP2b), recruiting from four UK sites, will allow patients to be characterised and their illness trajectory observed across 1 year of follow-up. Finally, WP3 will synthesise the findings and conduct work to gain consensus on how best to identify and manage this patient group. RESULTS: Results from the four work packages will be synthesised to produce a summary of key learning points and possible solutions (optimised programme) which will be presented to a broad spectrum of stakeholders to gain consensus on a way forward. CONCLUSION: HFpEF is often described as the greatest unmet need in cardiology. The OPTIMISE-HFpEF programme aims to address this need in primary care, which is arguably the most appropriate setting for managing HFpEF.

Healthcare-seeking behavior among the Chakma ethnic group in Bangladesh: can accessibility and cultural beliefs shape healthcare utilization?

Existing studies lack qualitative information on the perceived reasons for ethnic minority groups' healthcare choices, attitudes toward healthcare services, and common practices based on traditional cultural belief systems in Bangladesh. This study noted the important influence of culture and beliefs with regard to availing healthcare services. Informal sector providers such as para-professionals and traditional healers take the lead in rendering physically, financially, and culturally accessible healthcare services in the context of under-utilization of public healthcare facilities. Salient factors determining the choice of therapy were the perceived causes of illness and physical and financial access to the health services. These drivers of health seeking behavior in an increasingly pluralistic healthcare system need to be taken into account to strengthen the current healthcare delivery system and to design specific health education and healthcare promotion programs for the poor, hard-to-reach, and under-served ethnic minority.