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.
Background Despite a growing elderly South Asian population, little is known about the experience of diagnosis and care for those living with dementia. There have been a number of individual qualitative studies exploring the experiences of South Asian people living with dementia and their carers across different contexts. There has also been a growing interest in synthesizing qualitative research to systematically integrate qualitative evidence from multiple studies to tell us more about a topic at a more abstract level than single studies alone. The aim of this qualitative synthesis was to clearly identify the gaps in the literature and produce new insights regarding the knowledge and understanding of the attitudes, perceptions, and beliefs of the South Asian community about dementia. Methods Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI). Findings were synthesized using the Joanna Briggs Institute approach to qualitative synthesis by meta-aggregation. Results Seventeen papers were critically appraised, with 13 meeting the inclusion criteria. Participants were mostly of South Asians of Indian background; followed by Pakistani with a few Sri Lankans. Missing South Asian countries from the current evidence base included those from Bangladesh, Bhutan, Maldives, and Nepal. Three meta-synthesis themes emerged from the analysis: (1) a poor awareness and understanding of dementia, (2) the experience of caregiving, and (3) the attitudes toward dementia care provision. Conclusions A consistent message from this qualitative synthesis was the limited knowledge and understanding of dementia amongst the South Asians. Whilst symptoms of dementia such as ‘memory loss’ were believed to be a part of a normal ageing process, some South Asian carers viewed dementia as demons or God’s punishments. Most studies reported that many South Asians were explicit in associating stigmas with dementia.
Rationale, aims, and objectives: There is a general lack of awareness and understanding of dementia within ethnic minority groups in the United Kingdom. There is also a dearth of research involving ethnic minority caregivers about reducing barriers to accessing services and optimizing engagements with religiously tailored interventions. This paper reports findings from a qualitative study that examined the barriers to health care service use in the Bangladeshi community living in the United Kingdom. Methods: The research draws on findings from a doctoral level research study on understanding dementia among the Bangladeshi community in England. The data for the doctoral research were gathered in two ways: (a) focus group discussions and (b) semi-structured interviews. All data were audio-recorded and analysed using thematic analysis. NVivo software was used to aid transcribing, coding, and interpretation of emergent themes. Results: The data showed that there were some barriers experienced by participants due to their religious and cultural beliefs and practices with other barriers related to the complexity of the UK health care system. Gender-based caregiving also appeared to interfere with religious ideologies while religiously appropriate health care services were deemed of great importance for successfully accessing those services. Conclusions: The findings provide an understanding of the experiences of the Bangladeshi community when seeking to access mainstream UK health care services and may help to provide useful directions for future research.
BackgroundAbout half of all people with heart failure have heart failure with preserved ejection fraction (HFpEF), in which the heart is stiff. This type of heart failure is more common in older people with a history of hypertension, obesity, and diabetes mellitus. Patients with HFpEF are often managed in primary care, sometimes in collaboration with specialists. Knowledge about how best to manage this growing population is limited, and there is a pressing need to improve care for these patients.AimTo explore clinicians’ and patients’/carers’ perspectives and experiences about the management of HFpEF to inform the development of an improved model of care.Design and settingA multiperspective qualitative study involving primary and secondary care settings across the east of England, Greater Manchester, and the West Midlands.MethodSemi-structured interviews and focus groups were conducted. Transcribed data were analysed using framework analysis and informed by the normalisation process theory (NPT).ResultsIn total, 50 patients, nine carers/relatives, and 73 clinicians were recruited. Difficulties with diagnosis, unclear illness perceptions, and management disparity were identified as important factors that may influence management of HFpEF. The NPT construct of coherence reflected what participants expressed about the need to improve the identification, understanding, and awareness of this condition in order to improve care.ConclusionThere is a pressing need to raise the public and clinical profile of HFpEF, develop a clear set of accepted practices concerning its management, and ensure that systems of care are accessible and attuned to the needs of patients with this condition.
Background This paper considers remote working in patient public involvement and engagement (PPIE) in health and social care research. With the advent of the Covid-19 pandemic and associated lock-down measures in the UK (from March 2020), PPIE activities switched to using remote methods (e.g., online meetings), to undertake involvement. Our study sought to understand the barriers to and facilitators for remote working in PPIE by exploring public contributors’ and PPIE professionals’ (people employed by organisations to facilitate and organise PPIE), experiences of working remotely, using online and digital technologies. A particular focus of our project was to consider how the ‘digital divide’ might negatively impact on diversity and inclusion in PPIE in health and social care research. Methods We used a mixed method approach: online surveys with public contributors involved in health and social care research, online surveys with public involvement professionals, and qualitative interviews with public contributors. We co-produced the study with public contributors from its inception, design, subsequent data analysis and writing outputs, to embed public involvement throughout the study. Results We had 244 respondents to the public contributor survey and 65 for the public involvement professionals (PIPs) survey and conducted 22 qualitative interviews. Our results suggest public contributors adapted well to working remotely and they were very positive about the experience. For many, their PPIE activities increased in amount and variety, and they had learnt new skills. There were both benefits and drawbacks to working remotely. Due to ongoing Covid restrictions during the research project, we were unable to include people who did not have access to digital tools and our findings have to be interpreted in this light. Conclusion Participants generally favoured a mixture of face-to-face and remote working. We suggest the following good practice recommendations for remote working in PPIE: the importance of a good moderator and/or chair to ensure everyone can participate fully; account for individual needs of public contributors when planning meetings; provide a small expenses payment alongside public contributor fees to cover phone/electricity or WiFi charges; and continue the individual support that was often offered to public contributors during the pandemic.
Objectives To explore the perspectives of general practitioners (GPs) on the identification and management of people, including those from ethnic minority groups, with Heart Failure with Preserved Ejection Fraction (HFpEF). Methods Qualitative study. Semi-structured, face-to-face or telephone interviews and focus groups were conducted with 35 GPs in England, which were audio-recorded and transcribed verbatim. Framework analysis was used to manage and interpret data. Results Themes presented reflect four inter-related challenges: GPs’ 1) lack of understanding HFpEF, impacting on 2) difficulties in communicating the diagnosis, leading to 3) uncertainty in managing people with HFpEF, further hindered by (4) discontinuity across the primary/secondary interface. All were considered more challenging by GPs when managing people from different cultures and languages. Discussion HFpEF is not well understood by GPs, leading to diagnostic difficulty, management uncertainty and potential inequity in care offered. People with HFpEF are seen as complex, with multiple long-term conditions and requiring personalised care. Challenges in their management occur across the healthcare system. This study has identified learning needs for GPs around identification and on-going support for people with HFpEF in primary care. It will contribute to the development of more flexible and patient-centred pathways across the primary/secondary care interface.
BackgroundHeart 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.AimThe 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 & settingThis is a multi-method programme of research conducted in the UK.MethodOPTIMISE-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.ResultsResults 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.ConclusionHFpEF 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.
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