Dataset Information

Black and minority ethnic group involvement in health and social care research: A systematic review.

ABSTRACT:

Background

Patient and public involvement (PPI) in research is growing internationally, but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research.

Objectives

To characterize and critique the empirical literature on BME-PPI involvement in health and social care research.

Search strategy

Systematic searches of six electronic bibliographic databases were undertaken, utilizing both MeSH and free-text terms to identify international empirical literature published between 1990 and 2016.

Inclusion criteria

All study designs that report primary data that involved BME groups in health or social care research. Screening was conducted by two reviewers.

Data extraction and synthesis

Data extraction and quality appraisal were performed independently. Data extraction focused on the level(s) of PPI involvement and where PPI activity occurred in the research cycle. Studies were quality-assessed using the guidelines for measuring the quality and impact of user involvement in research. Data were analysed using a narrative approach.

Main results

Forty-five studies were included with the majority undertaken in the USA focusing on African Americans and indigenous populations. Involvement most commonly occurred during the research design phase and least in data analysis and interpretation.

Conclusion

This is the first systematic review investigating BME involvement in health and social care research internationally. While there is a widespread support for BME involvement, this is limited to particular phases of the research and particular ethnic subgroups. There is a need to understand factors that influence BME involvement in all parts of the research cycle.

SUBMITTER: Dawson S

PROVIDER: S-EPMC5750731 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Black and minority ethnic group involvement in health and social care research: A systematic review.

Dawson Shoba S Campbell Stephen M SM Giles Sally J SJ Morris Rebecca L RL Cheraghi-Sohi Sudeh S

Health expectations : an international journal of public participation in health care and health policy 20170815 1

<h4>Background</h4>Patient and public involvement (PPI) in research is growing internationally, but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research.<h4>Objectives</h4>To characterize and critique the empirical literature on BME-PPI involvement in health and social care research.<h4>Search strategy</h4>Systematic searches of six electronic bibliographic databases were undertaken, utilizing both MeSH ...[more]

PMID: 28812330

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Project description:BackgroundBlack, Asian and minority ethnic communities suffer from disproportionately poorer health than the general population. This issue has been recently exemplified by the large numbers of infection rates and deaths caused by covid-19 in BAME populations. Future research has the potential to improve health outcomes for these groups. High quality research priority setting is crucial to effectively consider the needs of the most vulnerable groups of the population.ObjectiveThe purpose of this systematic review is to identify existing research priority studies conducted for BAME health and to determine the extent to which they followed good practice principles for research priority setting.MethodIncluded studies were identified by searching Medline, Cinnahl, PsychINFO, Psychology and Behavioral Sciences Collection, as well as searches in grey literature. Search terms included "research priority setting", "research prioritisation", "research agenda", "Black and minority ethnic", "ethnic group". Studies were included if they identified or elicited research priorities for BAME health and if they outlined a process of conducting a research prioritisation exercise. A checklist of Nine Common Themes of Good Practice in research priority setting was used as a methodological framework to evaluate the research priority processes of each study.ResultsOut of 1514 citations initially obtained, 17 studies were included in the final synthesis. Topic areas for their research prioritisation exercise included suicide prevention, knee surgery, mental health, preterm birth, and child obesity. Public and patient involvement was included in eleven studies. Methods of research prioritisation included workshops, Delphi techniques, surveys, focus groups and interviews. The quality of empirical evidence was diverse. None of the exercises followed all good practice principles as outlined in the checklist. Areas that were lacking in particular were: the lack of a comprehensive approach to guide the process; limited use of criteria to guide discussion around priorities; unequal or no representation from ethnic minorities, and poor evaluation of their own processes.ConclusionsResearch priority setting practices were found to mostly not follow good practice guidelines which aim to ensure rigour in priority setting activities and support the inclusion of BAME communities in establishing the research agenda. Research is unlikely to deliver useful findings that can support relevant research and positive change for BAME communities unless they fulfil areas of good practice such as inclusivity of key stakeholders' input, planning for implementation of identified priorities, criteria for deciding on priorities, and evaluation of their processes in research priority setting.

Project description:IntroductionEvidence to date indicates that patients from ethnic minority backgrounds may experience disparity in the quality and safety of health care they receive due to a range of socio-cultural factors. Although heightened risk of patient safety events is of key concern, there is a dearth of evidence regarding the nature and rate of patient safety events occurring amongst ethnic minority consumers, which is critical for the development of relevant intervention approaches to enhance the safety of their care.ObjectivesTo establish how ethnic minority populations are conceptualised in the international literature, and the implications of this in shaping of our findings; the evidence of patient safety events arising among ethnic minority healthcare consumers internationally; and the individual, service and system factors that contribute to unsafe care.MethodA systematic review of five databases (MEDLINE, PUBMED, PsycINFO, EMBASE and CINAHL) were undertaken using subject headings (MeSH) and keywords to identify studies relevant to our objectives. Inclusion criteria were applied independently by two researchers. A narrative synthesis was undertaken due to heterogeneity of the study designs of included studies followed by a study appraisal process.ResultsForty-five studies were included in this review. Findings indicate that: (1) those from ethnic minority backgrounds were conceptualised variably; (2) people from ethnic minority backgrounds had higher rates of hospital acquired infections, complications, adverse drug events and dosing errors when compared to the wider population; and (3) factors including language proficiency, beliefs about illness and treatment, formal and informal interpreter use, consumer engagement, and interactions with health professionals contributed to increased risk of safety events amongst these populations.ConclusionEthnic minority consumers may experience inequity in the safety of care and be at higher risk of patient safety events. Health services and systems must consider the individual, inter- and intra-ethnic variations in the nature of safety events to understand the where and how to invest resource to enhance equity in the safety of care.Review registrationThis systematic review is registered with Research Registry: reviewregistry761.

Project description:IntroductionInternational policy recommends continuous, cost-effective monitoring of health data to enable health services to identify and respond to health inequities as experienced by different ethnic groups. However, there is a lack of routinely collected ethnicity data, particularly in primary care, and very little implementation research internationally to understand how ethnic identifiers are introduced, embedded and used in healthcare settings. This paper describes a protocol for a novel participatory health research project with the objective of building the evidence base on ethnic minority health in Ireland. Findings on the participatory appraisal of ethnic identifiers as an intervention to generate useful data about minority and majority ethnic groups will have relevance in other settings and countries.Methods and analysisThis multidisciplinary project is designed as a participatory health research study where all stakeholders, including ethnic minority communities, participate in co-design of the research protocol, project governance, collaborative data interpretation and disseminating findings. A national catalogue of all routinely collected health data repositories will be electronically searched for any repositories that contain information on ethnicity. A secondary quantitative analysis of a population-representative cohort study, Growing Up in Ireland, will be carried out to compare the health of ethnic minority and majority groups. A qualitative case study informed by normalisation process theory will be carried out at three primary care sites to monitor the implementation of an ethnic identifier and identify barriers and levers to implementation.Ethics and disseminationEthical approval for the qualitative case study has been granted by the Irish Council for General Practitioners (06/09/17). Permission to access data from Growing Up in Ireland has been granted by the Director General of the Central Statistics Office. Dissemination will be carried out at community events and academic conferences, in peer-reviewed journal publications, and through academic and healthcare provider networks.

Project description:Current research has identified how ethnic minority women experience poorer health outcomes during the perinatal period. In the United Kingdom, specialist perinatal mental health services provide mental health treatment for women throughout the perinatal period. Service users have previously highlighted that perinatal services are hard to access and lack cultural sensitivity, whereas healthcare professionals have described limited opportunities and resources for developing cultural competency. We explored the experiences of ethnic minority women with National Health Service (NHS) specialist perinatal teams and identified what culturally sensitive perinatal mental health care means to this group. Individual semi-structured interviews were conducted, and an interpretative phenomenological analysis framework was used to analyse the interview transcripts. Participants were recruited from NHS specialist perinatal teams and online via social media. Six women were interviewed. Four group experiential themes central to the experiences of participants emerged: (1) strengthening community networks and peer support; (2) valuing cultural curiosity; (3) making sense of how culture, ethnicity, race and racism impact mental health; and (4) tailoring interventions to ethnic minority women and their families. The findings capture how ethnic minority women experience specialist perinatal teams and offer insights into practising culturally sensitive care. Perinatal mental health professionals can support ethnic minority women by strengthening their access to community resources and peer support; being curious about their culture; helping them to make sense of how culture, ethnicity, race and mental health interact; and applying cultural and practical adaptations to interventions. A Lived Experience Advisory Group (LEAG) of women from ethnic minority groups contributed to the design and conduct of this study. The LEAG had lived experience of perinatal mental health conditions and accessing specialist perinatal teams. The LEAG chose to co-produce specific aspects of the research they felt fit with their skills and available time throughout five group sessions. These aspects included developing the interview topic guide, a structure for debriefing participants and advising on the social media recruitment strategy.

Project description:Background/objectivesWhile it is acknowledged that minority ethnic (ME) groups across international settings face barriers to accessing care for dementia, it is not clear whether ME groups access services less frequently as a result. The objective of this review is to examine whether ME groups have longer delays before accessing dementia/memory services, higher use of acute care and crisis services and lower use of routine care services based on existing literature. We also examined whether ME groups had higher dementia severity or lower cognition when presenting to memory services.DesignSystematic review with narrative synthesis.SettingNonresidential medical, psychiatric, memory, and emergency services.ParticipantsTwenty studies totaling 94,431 older adults with dementia or mild cognitive impairment.MeasurementsWe searched Embase, Ovid MEDLINE, Global Health, and PsycINFO from inception to November 2018 for peer-reviewed observational studies which quantified ethnic minority differences in nonresidential health service use in people with dementia. Narrative synthesis was used to analyze findings.ResultsTwenty studies were included, mostly from the U.S. (n = 13), as well as the UK (n = 4), Australia (n = 1), Belgium (n = 1), and the Netherlands (n = 1). There was little evidence that ME groups in any country accessed routine care at different rates than comparison groups, although studies may have been underpowered. There was strong evidence that African American/Black groups had higher use of hospital inpatient services versus U.S. comparison groups. Primary care and emergency services were less well studied. Study quality was mixed, and there was a large amount of variability in the way ethnicity and service use outcomes were ascertained and defined.ConclusionThere is evidence that some ME groups, such as Black/African American groups in the U.S., may use more acute care services than comparison populations, but less evidence for differences in routine care use. Research is sparse, especially outside the U.S.

Dataset Information

Black and minority ethnic group involvement in health and social care research: A systematic review.

Background

Objectives

Search strategy

Inclusion criteria

Data extraction and synthesis

Main results

Conclusion

Publications

Black and minority ethnic group involvement in health and social care research: A systematic review.

Similar Datasets

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