Recruitment and methodological issues in conducting dementia research in British ethnic minorities: A qualitative systematic review

Waheed, Waquas; Mirza, Nadine; Waheed, Muhammed Wali; Blakemore, Amy; Kenning, Cassandra; Masood, Yumna; Matthews, Fiona E.; Bower, Peter

doi:10.1002/mpr.1806

Cited by 14 publications

(11 citation statements)

References 46 publications

(174 reference statements)

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“…statistical indicators or self-reported identity); lack of translated and cross-culturally validated standardized measures; cost and availability of accredited HCIs and translators; and other settlement priorities (e.g. employment and education) taking precedence for communities [ 50 , 52 ]. Seeding grants and small pilot studies have a place but are no substitute for sustained support to undertake long-term research across multiple sites and communities [ 18 ].…”

Section: Discussionmentioning

confidence: 99%

A framework for preferred practices in conducting culturally competent health research in a multicultural society

Woodland

Blignault

O’Callaghan

et al. 2021

Health Res Policy Sys

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Background Improving the health and well-being of the whole population requires that health inequities be addressed. In an era of unprecedented international migration, meeting the health care needs of growing multicultural or multiethnic societies presents major challenges for health care systems and for health researchers. Considerable literature exists on the methodological and ethical difficulties of conducting research in a cross-cultural context; however, there is a need for a framework to guide health research in multicultural societies. Methods The framework was informed by “research on research” that we have undertaken in community and primary health care settings in Sydney, Australia. Case studies are presented as illustrative examples. Results We present a framework for preferred practices in conducting health research that is culturally informed, high-quality, safe, and actionable. Conclusions The framework is not intended to be universal, however many of its aspects will have relevance for health research generally. Application of the framework for preferred practices could potentially make health research more culturally competent, thus enabling enhanced policies, programmes and practices to better meet population health needs. The framework needs to be further tested and refined in different contexts.

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Section: Discussionmentioning

confidence: 99%

A framework for preferred practices in conducting culturally competent health research in a multicultural society

Woodland

Blignault

O’Callaghan

et al. 2021

Health Res Policy Sys

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“…It has been established that there is under representation of ethnic minority groups within healthcare research (29, 30) and for research into dementia care there is no exception (21). Two recent large RCTs of complex rehabilitation interventions for people with dementia reported only 4% (31) and 5-6% (28) of their overall participants were from ethnic minority backgrounds.…”

Section: Introductionmentioning

confidence: 99%

Exploring the diversity of participants with dementia taking part in research: a mixed methods study

Bajwa,

Howe,

Agbonmwandolor

et al. 2023

Preprint

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Introduction: Dementia is becoming increasingly prevalent in the UK. Older adults from black and south Asian communities have a higher risk for dementia due to an increased prevalence of dementia specific risk factors such as hypertension, diabetes, and heart disease. Deprivation has also been linked to an increased risk of dementia. Ethnic minority and lower socioeconomic groups are underrepresented in dementia research. The aim of this study was to explore factors influencing diversity in dementia and rehabilitation research within the context of the Promoting Activity, Independence, and Stability in Early Dementia (PrAISED) randomised controlled trial (RCT). Methods: We conducted an exploratory sequential mixed methods study to explore disparities in socioeconomic and ethnic diversity between the PrAISED RCT population and recruitment pathways used in one study site (Nottinghamshire) and compared these with regional and national data. We aimed to collate and summarise data available on ethnicity and deprivation for recruitment/referral pathways (Nottinghamshire site) and the PrAISED cohort (all sites). Additionally, we interviewed healthcare professionals (n=2), researchers (n=2) and members of black and south Asian communities (n=4) to explore barriers to participating in research for people with dementia. Results: Under 2% of the overall PrAISED RCT sample (across all sites) were from a non-white ethnic minority background and a third of participants lived in areas with the least deprivation. Referrals to memory assessment services in Nottinghamshire included people from diverse socioeconomic backgrounds, with 7.3% being from non-white ethnic minority communities. Through interviews, several barriers to healthcare, research and rehabilitation were identified. Healthcare barriers included lack of awareness of dementia, mistrust, stigma, fear, and lack of culturally appropriate services. Research barriers included recruitment routes, awareness of research, language, and recruiter beliefs. Barriers to rehabilitation research included a lack of use of culturally appropriate language, more culturally specific barriers, and lack of representation. Conclusion: Participants recruited to the PrAISED RCT were mainly white and socioeconomically privileged. Data recording and access around ethnicity is still inconsistent, making it difficult to ascertain at which point services and research become inaccessible for people from underserved communities. Future research needs to work with these communities to develop innovative solutions to overcome the barriers identified in this study and to put recommendations made into practice.

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“…However, there are several ethical and practical barriers to participation in research by people with dementia, including a lack of an ethical gold standard for recruitment and assessment of capacity to provide consent, concerns regarding potential risk, and the protection of individuals vulnerabilities and rights (Götzelmann et al, 2021; Waite et al, 2019; West et al, 2017). For Indigenous people with dementia, cultural factors including diverse attitudes and beliefs about the disease, and language barriers may further impede recruitment and participation in research (Waheed et al, 2020). Research conducted with Indigenous people should be safe, respectful, responsible, high quality and produce genuine benefit (National Health and Medical Research Council, 2018; Sherwood & Anthony, 2020).…”

Section: Introductionmentioning

confidence: 99%

Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021

et al. 2022

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Introduction High quality research involving Indigenous people with cognitive impairment and dementia is critical for informing evidence-based policy and practice. We examined the volume, scope and ethical considerations of research related to dementia with Indigenous populations globally from January 2000–December 2021. Methods Studies were included if they were published in English from 2000 to 2021 and provided original data that focused on cognitive impairment or dementia in any Indigenous population. Results The search yielded 13,009 papers of which, 76 met inclusion criteria. The overall number of papers increased over time. Studies were mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 30; 39%). Twenty-six papers directly involved Indigenous participants with cognitive impairment or dementia. Of these studies, ethics approval was commonly required from two or more committees (n = 23, 88.5%). Ethical and legal governance frameworks were rarely discussed. Discussion There is a clear need for further robust studies examining cognitive impairment and dementia with Indigenous populations. Future research should consider the ethical aspects of involving Indigenous participants with cognitive impairment in research.

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Recruitment and methodological issues in conducting dementia research in British ethnic minorities: A qualitative systematic review

Cited by 14 publications

References 46 publications

A framework for preferred practices in conducting culturally competent health research in a multicultural society

A framework for preferred practices in conducting culturally competent health research in a multicultural society

Exploring the diversity of participants with dementia taking part in research: a mixed methods study

Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021

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