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Synthesis of researcher reported strategies to recruit adults of ethnic minorities to clinical trials in the United Kingdom: A systematic review
Abstract
Background:
People from ethnic minorities are reported to have higher rates of physical illness (diabetes and ischemic heart disease) and mental disorders. Disparities relate not just to diagnosis, but also to care pathways and treatment outcomes. Despite this, they are underrepresented in clinical research. This reduces the generalisability of research findings across multi ethnic populations and hinders the development of accessible services. Researchers often face difficulties in recruiting ethnic minority participants to clinical research due to low levels of cultural competence and limited resources. There are few published trials focusing on ethnic minorities in the UK and we need to understand what recruitment strategies have already been implemented and recommended when recruiting ethnic participants. This will help researchers in applying these lessons to future clinical trials.
Method:
To identify strategies for recruiting ethnic minorities to clinical trials in the UK a systematic review of published randomised controlled trials (RCT) exclusively targeting ethnic minorities was conducted. Multiple databases were searched by combining the terms "ethnic minorities", "randomised controlled trials" and "United Kingdom". Data was extracted on recruitment strategies described by each RCT and then themes were created.
Results:
Twenty-one included RCT's identified various strategies to recruit ethnic communities to clinical trials. These have been described under three overarching themes; adaptation of screening and outcome measures, culturally specific recruitment training and recruitment processes.
Conclusion:
The review highlighted that researchers employed limited strategies to enhance the recruitment level. The full extent of the use of strategies was not described well in the publications. There is a need for wider training and support for the trialist to enhance and build up recruitment skills to facilitate the recruitment of ethnic minorities to clinical trials.
... 26 The UK has no such regulation on inclusive clinical research. 27 In 2017, the National Institute for Health and Care Research (NIHR) commissioned the NIHR Protected by copyright. 28 29 Although the introduction of guidance on inclusive research in the UK is a significant touchstone, impact is difficult to assess given its recency. ...
... 34 Language also represents a key obstacle to inclusion; for example, a study of randomised controlled trials in Britain reported that 64% of excluded patients were unable to communicate in English. 27 Certain groups may also face disproportionate logistical obstacles including costs of childcare or transportation. Research in the USA noted that large medical centres where clinical trials tend to be conducted rarely align geographically with areas where minority ethnic groups reside. ...
... For example, research on NIHR mental health studies found 64% had a blanket exclusion against those unable to communicate in English. 27 Soft approaches outside of industry have also been suggested such as working with religious or community networks. 33 58 Such strategies are relatively low investment and without biological implications that could impact the merit of trial outcomes. ...
Objectives
The representation of ethnic minority groups in European vaccine trials is an important and hitherto unaddressed gap in the literature. The objectives of this study were to determine the proportion of European vaccine trials that report data on the ethnic demographics of participants, to evaluate the distribution of ethnic minority groups among trial participants (where reported), and ascertain whether this is representative of the wider population of the country.
Design
We evaluated the representation of ethnic/racial minority groups in clinical research, conducting a quantitative analysis of clinical trials registry data from completed vaccine trials in Europe that commenced between 1 January 2010 and 31 December 2020.
Data sources
Data were collected from four major clinical trial databases: ClinicalTrials.gov, the European Union Clinical Trials Register (EUCTR), the International Standard Randomised Controlled Trial Number (ISRCTN) and the International Clinical Trials Registry Platform (ICTRP).
Results
A majority of clinical trials failed to either record or report the race/ethnicity of their volunteers on the clinical trials registry databases. Reported participants in UK vaccine trials were not representative of the ethnic demographics of the wider population. Unavailability of population-level ethnicity data for many European countries was a significant barrier to determining the wider applicability of these findings.
Conclusions
Under-representation of ethnic minority groups in vaccine trials may have implications for the effectiveness of routine vaccinations, threatening the principles of justice and equity that are embedded in national medical research guidelines. Unavailability of population-level ethnicity data exacerbates the prevailing lack of understanding of the extent of this issue, despite literature indicating cause for concern.
... Given the lack of evidence in this area of research, there is an immediate need for the government, researchers and health professionals to prioritise inclusivity in cardiac clinical trials. Research has highlighted several strategies to improve inclusivity in clinical research trials (Masood et al, 2019). This commentary aims to critically appraise the methods used in the review by Masood et al (2019) and expand on the findings in the context of clinical practice. ...
... Research has highlighted several strategies to improve inclusivity in clinical research trials (Masood et al, 2019). This commentary aims to critically appraise the methods used in the review by Masood et al (2019) and expand on the findings in the context of clinical practice. ...
... In their systematic review, Masood et al (2019) conducted a comprehensive search strategy, including four databases: Medline, Embase, PsychInfo and CINAHL. In addition, the authors performed a manual search of the reference list of each included study. ...
In this commentary, Nirmala Sam and colleagues critically appraise a systematic literature review that synthesised strategies to recruit adults of ethnic minorities to clinical trials in the UK.
... Whilst summaries of existing evidence relating to engagement have been made for specifc population groups, to our knowledge, no synthesis of the literature exists to identify the strategies being used to access and engage general subgroups who live with precarity and are "hard-toreach." Additionally, there is a paucity of information relating to community-based research, with a majority of the studies focussing on recruitment into clinical research [9,[18][19][20][21][22][23][24][25]. Tis scoping review was conducted to identify strategies to efectively engage, integrate, and amplify the "authentic voices" of populations potentially underrepresented in all stages of the research process (conceptualisation through to dissemination). ...
... Engaging with key partners early, ideally prior to developing research agendas or questions during a "preengagement" phase is critical [3,22,23,26]. Preengagement is characterised by progressive stages of involvement through which activities, systems, and priorities are aligned [26] to develop a partnership based on shared perspectives and understanding of priorities and needs [3,13,26]. ...
... Tis included serving on community advisory and action groups to target and drive ongoing research agendas, employment as peer researchers or peer interviewers, assisting in data interpretation, and presenting research fndings at conferences [4,6,7,9,10,15,20,32,33]. Active engagement facilitated partnerships and enabled groups to take ownership of the research, resulting in substantial benefts in terms of "participant" recruitment, quality of data collected and research outputs, and adoption [1,6,10,15,23,32]. In the case of peer interviewers, having a relatable person collecting the data made "participants" more comfortable and open with their responses, whilst the lived experience of the peer researcher enabled them to better understand and tailor questions to facilitate more in-depth responses [4]. ...
Research has historically focussed on participants who are relatively easy to access; those who have resources (time and literacy) to respond to surveys, who can travel, and are socially connected. Failure to meaningfully engage with intended participants and achieve representativeness in participation risks diminishing the applicability and impact of research findings to local contexts. Motivated by goals of social justice and health equity, this scoping review sought to identify strategies to effectively engage and integrate the “authentic voice” of populations that are described as vulnerable or precarious and therefore perceived as “hard-to-reach.” A system tic search strategy identified 34 eligible papers. Articles underwent (i) a title and abstract screening by two reviewers, followed by (ii) a full text review of eligible articles by one author. Free-form research problem mind-mapping was applied to facilitate analysis and generate creative associations between ideas. Thematic and content analysis was then applied to generate themes and subthemes. Four high-level themes emerged: key players, trust and rapport, navigating structural precarity, and moving beyond “participation.” We identified that substantial shifts in researcher mindsets are required to reframe perceptions of vulnerability and move towards strengths-based approaches. Efforts need to be directed towards establishing deep trust and rapport through early engagement and social reciprocity. Systemic barriers to research participation and partnership must be addressed to overcome issues of structural precarity. We urge researchers and practitioners to embrace “scholar activism” and to actively dismantle the precarity that limits active “participation” and to build deliberate strategies to create forums where the “authentic” voice can be amplified.
... However, there is a growing shift away from defining the 'problem' in terms of the unwillingness of participants to engage in research. Instead, more attention is being given to the need for researchers to adapt their study designs and recruitment practices to be more inclusive of and relevant to a broader range of people and lived experiences [4][5][6][7][8][9]. ...
... A rich body of research is emerging that demonstrates that recruitment of migrants and other minority groups into scientific studies is possible if tailored strategies are adopted [6][7][8][9][10][11]. However, minority groups are neither homogenous nor static, and it cannot be assumed that recruitment strategies adopted in one study will necessarily be successful in another. ...
... In light of these complexities and the pressing need to redress the problem of underrepresentation in research, there have been calls for researchers to provide more detailed descriptions of the recruitment methods used and their outcomes [6,7]. More transparent and fulsome reporting of recruitment methods will provide guidance to future researchers, as well as build our knowledge about which recruitment methods work for whom and in which contexts. ...
In this article, we describe the approaches taken to recruit adult migrants living in Australia for a sexual health and blood-borne virus survey (paper and online) and present data detailing the outcomes of these approaches. The purpose was to offer guidance to redress the under-representation of migrants in public health research. Methods of recruitment included directly contacting people in individual/organizational networks, social media posts/advertising, promotion on websites, and face-to-face recruitment at public events/venues. Search query strings were used to provide information about an online referral source, and project officers kept records of activities and outcomes. Descriptive statistical analyses were used to determine respondent demographic characteristics, proportions recruited to complete the paper and online surveys, and sources of referral. Logistic regression analyses were run to predict online participation according to demographic characteristics. The total sample comprised 1454 African and Asian migrants, with 59% identifying as female. Most respondents (72%) were recruited to complete the paper version of the survey. Face-to-face invitations resulted in the highest number of completions. Facebook advertising did not recruit large numbers of respondents. Same-sex attraction and age (40–49 years) were statistically significant predictors of online completion. We encourage more researchers to build the evidence base on ways to produce research that reflects the needs and perspectives of minority populations who often bear the greatest burden of disease.
... Placing recruitment in, say, a hospital clinic makes an assumption that all potential beneficiaries of the trial intervention attend hospital clinics in the same way, which may be far from true. For example, some ethnic groups may be less likely to attend, or be referred to, those clinics, meaning individuals in these groups are, by design, less able to take part in the trial [15][16][17]. Using UK care homes to support recruitment to falls prevention trials is likely to disproportionately benefit White British people because a larger proportion of older adults from ethnic minorities are cared for in the family home [18]. ...
... Although it is beyond trial researchers to improve Fig. 1 Four recommendations for designing and running trials that include the ethnic groups needed by the trial attendance in healthcare, steps can be taken to widen the recruitment settings. How people come into contact with the trial is an important consideration: trial teams need to consider the cultural and other preferences and beliefs that influence both health provision and care-seeking behaviour [17]. ...
... A common recruitment approach is for a clinical or research staff member to directly approach potential participants in a clinic or waiting room to ask if they would be interested in taking part in the trial. The respective cultural perspectives of the member of staff and the potential participant can lead to uncertainty and misunderstandings [17]. Those tasked with recruitment may be hesitant, unwilling or not feel confidently trained to raise trial participation with people from different ethnic groups. ...
Randomised trials, especially those intended to directly inform clinical practice and policy, should be designed to reflect all those who could benefit from the intervention under test should it prove effective. This does not always happen. The UK National Institute for Health and Care Research (NIHR) INCLUDE project identified many groups in the UK that are under-served by trials, including ethnic minorities.
This guidance document presents four key recommendations for designing and running trials that include the ethnic groups needed by the trial. These are (1) ensure eligibility criteria and recruitment pathway do not limit participation in ways you do not intend, (2) ensure your trial materials are developed with inclusion in mind, (3) ensure staff are culturally competent and (4) build trusting partnerships with community organisations that work with ethnic minority groups. Each recommendation comes with best practice advice, public contributor testimonials, examples of the inclusion problem tackled by the recommendation, or strategies to mitigate the problem, as well as a collection of resources to support implementation of the recommendations.
We encourage trial teams to follow the recommendations and, where possible, evaluate the strategies they use to implement them. Finally, while our primary audience is those designing, running and reporting trials, we hope funders, grant reviewers and approvals agencies may also find our guidance useful.
... To understand how an intervention impacts people from various ethnicities and socio-economic backgrounds, participants need to be representative of the population it seeks to serve [11,21,37,[64][65][66][67][68][69]. Research also shows that published biomedical studies often lack crucial information about the use of culturally sensitive recruitment methods [21,30,70]. By documenting how trials engage and recruit participants, particularly from groups underrepresented in cancer ED research, workshop participants recommended that researchers could learn from each other and avoid repeating mistakes [71,72]. ...
... Insights from the literature and fieldwork highlight that harm can be caused when researchers come with set ideas, respond insensitively to lived experiences, or wrongly assume that they know how to engage minoritized groups in research because they have worked with the public in other clinical contexts [15,16,86]. One way of mitigating such harms is through cultural humility training 5 for research teams, which has been proven to improve research participation amongst minoritized groups [21,37,70,[89][90][91][92]. Published recommendations on including underserved groups in biomedical research advise that researcher training could address: the significance of including minoritized groups in research, groupspecific barriers to participation, cross-cultural communication and dispelling harmful biases and stereotypes that researchers may have [21,37]. ...
Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.
... 18 Recruitment strategies and information provision approaches that work for the majority population may be ineffective for other parts of the population; there is little tailoring. 19 There is no rigorous evidence on approaches that might, for example, improve recruitment of particular BAME groups to trials. 20 Decisions to limit trial participant information leaflets and consent forms to English, for example, mean 44·9% of Bangladeshi women and 31% of Pakistani women older than 65 years in the UK will not understand them. ...
... Interpreters could be needed, along with culturally sensitive recruitment methods such as gender matching between research staff and potential participants. 19 Ensuring research is culturally and linguistically acces sible and inclusive requires the commitment and resources of researchers from the start and the resulting increase in costs for these studies will need to be considered by the funders. ...
... People with mental health issues, of all ages, and their carers where present need methods that support their situation both mentally and physically and offer convenience. This finding is consistent with that of a systematic review which found that researchers needed to consider potential participants' preferences and beliefs that could influence both health provision and willingness to participate in RCTs [43]. Age was a significant factor for consideration of recruitment methods. ...
Background
Barriers to mental health research participation are well documented including distrust of services and research; and stigma surrounding mental health. They can contribute to a lack of diversity amongst participants in mental health research, which threatens the generalisability of knowledge. Given the recent widespread use of the internet in medical research, this study aimed to explore the perspectives of key partners on the use of online (e.g. social media) and offline (e.g. in-person) recruitment as an approach to improving diversity in mental health randomised controlled trials (RCTs).
Methods
Face-to-face and online interviews/focus groups with researchers working in mental health and Patient and Public Involvement partners in the United Kingdom. Recordings were transcribed and analysed using a combination of inductive and deductive thematic analysis.
Results
Three focus groups and three interviews were conducted with a total N = 23 participants. Four overarching themes were identified: (1) recruitment reach; (2) Demographic factors that affect selection of recruitment method; (3) safety of technology, and; (4) practical challenges. Five main factors were identified that affect the choice of recruitment method: age, complexity of mental health problem and stigma, cultural and ethnicity differences and digital divide. The use of online methods was considered more accessible to people who may feel stigmatised by their mental health condition and with a benefit of reaching a wider population. However, a common view amongst participants was that online methods require closer data monitoring for quality of responders, are not fully secure and less trustworthy compared to offline methods that enable participants to build relationships with health providers. Funding, staff time and experience, organisational support, and technical issues such as spam or phishing emails were highlighted as practical challenges facing online recruitment. All participants agreed that using a hybrid approach tailored to the population under study is paramount.
Conclusions
This study highlighted the importance of offering a flexible and multifaceted recruitment approach by integrating online with offline methods to support inclusivity and widening participation in mental health research. The findings will be used to develop considerations for researchers designing RCTs to improve recruitment in mental health research.
... When the research team and participant do not share the same language, arriving at informed consent may not be possible [6][7][8][9]. However, utilising interpreters can lead to successful enrolment [10,11]. ...
Background:
While studies have identified strategies that are useful for recruiting people living with dementia, none have focused on psychosocial interventions involving arts therapies, or have examined the profiles of older people living in the community who consent or decline participation, particularly during a global pandemic. We aimed to identify the most effective recruitment strategies according to participant characteristics and transnational differences and develop a profile of consenting and non-consenting participants.
Methods:
Recruitment teams in Australia, Norway, Germany, Poland, and the United Kingdom, recorded participants' source of study awareness and characteristics of consenting and non-consenting participants. Distributions of participants 'consenting to participate' were compared and logistic regressions were used to estimate the odds ratios.
Results:
Consenting female caregivers were disproportionally represented. Study awareness differed between countries but overall, most expressions of interest to participate were derived from referrals from professionals or organisations, or from databases of people wanting to participate in research. Troughs in recruitment rates occurred during Northern Hemisphere summer vacation periods, and during Christmas periods.
Conclusions:
This study found that recruiting for a trial with community-dwelling family caregivers and people living with dementia is challenging, especially during a global pandemic. While spousal caregivers comprised the highest proportion of dyads recruited, overall spousal caregivers were more reluctant to consent to participate than adult child caregivers. More targeted recruitment strategies designed for minority groups are also needed to ensure broader representation in dementia treatment studies.
... Despite this work and a wide literature existing concerning the need for the inclusion of ethnic minorities (EM) in research [8], a recent report demonstrates that little effort has been made to promote diversity in research and in real terms, where diverse populations are available, research recruitment remains largely limited to white Caucasian, middle class, educated individuals [9]. In addition, a pre-pandemic systematic review investigating researcher reported strategies for non-white recruitment into clinical trials in the United Kingdom highlighted that limited strategies have been employed to increase recruitment among ethnic minorities [10]. Despite studies looking into language barriers in research and how these can be addressed [11], relatively little has been done to promote research for those who speak adequate English and who do not participate for various reasons, including unawareness of research taking place. ...
Background
Ethnic minorities (EM) are still underrepresented in research recruitment. Despite wide literature outlining the barriers, enablers and recommendations for driving inclusion and diversity in research, there is still little evidence for successful diversity in research participation, which has a direct impact on the quality of care provided to ethnically diverse individuals.
Methods
In the light of the Covid-19 pandemic and the key public health need to address the disparity in care provided to non-white populations, we applied the recommendations made by Ocloo and Matthews (2016) on diverse engagement in PPI groups to promote inclusive research recruitment.
Results
Our results demonstrate a significantly higher recruitment of EM populations to studies, when compared to recruitment in years 2017–2020.
Conclusions
Enriched by additional recommendations based on our experiences during the Covid-19 research recruitment drive, we propose the King’s Model is used to support ethnically diverse research recruitment. Further evidence is needed to replicate our findings, although this preliminary evidence provides granular details necessary to address the key unmet need of validating clinical research outcomes in non-white populations.
... It has been argued that the informed consent process may be contributing to inequalities in health research through a lack of flexibility in the process. [2][3][4][5][6][7][8][9][10] The informed consent process in health research aims to provide patients and the public with the information they require to make a voluntary decision about participation in health research. In May 2019, the International STRENGTHS AND LIMITATIONS OF THIS STUDY ⇒ Using realist methods to explore the contexts and mechanisms of the complexities affecting the informed consent process in health research, for people of diverse ethnic and cultural populations, allowed new insight to emerge. ...
Objective
To develop and refine a programme theory that explains factors that influence decisions to take part in health research by people of diverse ethnic and cultural backgrounds.
Design
Realist review following a sequence of five steps: (a) scoping search and identification of programme theory; (b) evidence searching; (c) critical appraisal and data extraction; (d) organisation of evidence and (e) refinement of programme theory.
Eligibility criteria
Documents (including peer-reviewed articles, grey literature, websites, reports and conference papers) either full text, or a section of relevance to the overarching research question were included.
Data sources
EMBASE, Medline, Web of Science, Psych Info, Google and Google Scholar were searched iteratively between May and August 2020. Search strategy was refined for each database providing a broad enough review for building of programme theory.
Analysis
Data from eligible documents was extracted to build understanding of the factors that influence decision-making. Data were mapped to create a data matrix according to context (C), mechanism (M), outcome (O), configurations (C) (CMOCs) for the process of informed consent, to aid interpretation and produce final programme theory.
Results
566 documents were screened and 71 included. Final programme theory was underpinned by CMOCs on processes influencing decisions to take part in research. Key findings indicate the type of infrastructure required, for example, resources, services and policies, to support inclusion in health research, with a greater need to increase the social presence of researchers within communities, improve cultural competency of individuals and organisations, reduce the complexity of participant information, and provide additional resources to support adaptive processes and shared decision making.
Conclusion
The review indicates the need for a more inclusive research infrastructure that facilitates diverse participation in health research through incorporating adaptive processes that support shared decision making within the informed consent process and in the conduct of research projects.
... Staff also reported that the quality of relationships with patients is sometimes impacted by language barriers. Future strategies such as availability of interpreters, linguistic and ethnic matching, and an awareness of cultural practices and norms provide possible options for addressing these barriers [31]. ...
Objective:
The success of pharmacological randomised controlled trials (RCTs) depends on the recruitment of the required number of participants. Recruitment to RCTs for patients with cirrhosis and small oesophageal varices raises specific additional challenges. The objectives of the study were 1) to explore patient perspectives on factors that influence RCT recruitment, 2) to understand factors that influence the success of recruitment from a staff perspective, and 3) to identify opportunities for tailored interventions to improve trial recruitment in this context.
Methods:
The qualitative study was embedded in a multi-centre blinded RCT (BOPPP trial) and was conducted alongside site opening. Semi-structured interviews were conducted with patients who enrolled to participate in the trial (n = 13), patients who declined to take part (n = 5), and staff who were responsible for recruiting participants to the trial (n = 18). An open approach to data collection and analysis was adopted and the Theoretical Domains Framework (TDF) was used to provide a theoretical lens through which to view influences on behaviour. Data was analysed using thematic analysis.
Results:
The findings consist of 5 overarching themes that outline trial recruitment influences at the patient, staff, team, organisational and trial levels: i) patient risks and benefits ii) staff attitudes, knowledge and capacity, iii) team-based approach, iv) organisational context and v) Trial collective. Patient-generated themes map onto thirteen of the fourteen TDF domains and staff-generated themes map onto all TDF domains. The overarching themes are not mutually exclusive; with evidence of direct interactions between patient and staff-level themes that influence recruitment behaviours.
Conclusions:
This study uses a theory-informed approach to gain new insights into improving clinical trial recruitment for patients with cirrhosis and small oesophageal varices. Although people with cirrhosis often display decreased healthcare-seeking behaviours, we found that patients used research to empower themselves to improve their health. Pragmatic trials involving unpredictable populations require staff expertise in building trust, and a deep knowledge of the patient group and their vulnerabilities. RCT recruitment is also more successful when research visits align with what staff identified as the natural rhythm of care.
Trial registration:
ISRCTN10324656; https://clinicaltrials.gov/.
... These results challenge the perception that clinical trials necessarily recruit people who are less unwell or impaired than the wider patient population [2]. In line with other research, this study highlights the importance of finding new ways to engage people from ethnic minority backgrounds in research studies [17]. ...
We aimed to explore the clinical relevance of a multicentre, pragmatic randomised trial of antipsychotic reduction in people diagnosed with schizophrenia or psychosis The sample recruited for the antipsychotic reduction study (n = 69 people) was compared with the population of patients with an eligible diagnosis undergoing treatment in the same service (n = 3067 people), using routinely-collected, anonymised data. The trial sample was found to resemble the wider population in terms of the number of past admissions, the likelihood of having been subject to legal detention and the level of risk the patient was perceived to pose to themselves or others. There was a lower proportion of people from minority ethnic backgrounds in the trial sample. The results provide some reassurance that trial recruits were similar to the wider population in terms of the severity of their condition and did not comprise a highly select sample of people with milder problems. The different ethnic composition of the research sample is consistent with other research.
... For example, a review of randomized clinical trials conducted in the U.S. between 2001 to 2010 for common mental disorders showed that racial and ethnic minorities were seriously underrepresented, accounting for 19% of the total sample in these trials; with some populations being represented less than 1% (e.g., American Indians, Alaska Natives) [17]. Despite major efforts to address this longstanding problem, the underrepresentation of vulnerable population persists in the U.S. [17,25] and globally [26]. This same problem is present for other health conditions (e.g., prostate cancer) [27][28][29]. ...
Background:
Research has generated valuable knowledge in identifying, understanding, and intervening to address inequities in the delivery of healthcare, yet these inequities persist. The best available interventions, programs and policies designed to address inequities in healthcare are not being adopted in routine practice settings. Implementation science can help address this gap by studying the factors, processes, and strategies at multiple levels of a system of care that influence the uptake, use, and the sustainability of these programs for vulnerable populations. We propose that an equity lens can help integrate the fields of implementation science and research that focuses on inequities in healthcare delivery.
Main text:
Using Proctor et al.' (12) framework as a case study, we reframed five elements of implementation science to study inequities in healthcare. These elements include: 1) focus on reach from the very beginning; 2) design and select interventions for vulnerable populations and low-resource communities with implementation in mind; 3) implement what works and develop implementation strategies that can help reduce inequities in care; 4) develop the science of adaptations; and 5) use an equity lens for implementation outcomes.
Conclusions:
The goal of this paper is to continue the dialogue on how to critically infuse an equity approach in implementation studies to proactively address healthcare inequities in historically underserved populations. Our examples provide ways to operationalize how we can blend implementation science and healthcare inequities research.
... 251). It is important to conduct high quality SRs on minority populations as they face discrepancies in accessing mental health services and, hence, poor treatment outcomes is not uncommon ( Masood et al. 2019). SRs conducted in the context of developing countries suggest that the impact of mHealth should be assessed based on the extent to which they influence behaviour leading to an improvement of public health services and the degree to which they take into consideration local needs (Aranda-Jan et al. 2014;Chigona et al. 2012). ...
Health disparities among historically disadvantaged populations can undermine the effectiveness of eHealth and mHealth interventions and limit their acceptability among diverse community members. The twin aims of this umbrella review of systematic reviews (SRs) are to summarise the evidence on the characteristics and effectiveness of eHealth and mHealth interventions among underserved populations in developed counties and provide recommendations to community organizers, policy makers and researchers. Comprehensive searches were conducted in bibliographic databases, Google Scholar and references lists for SRs published in English between 2000 and 2019. SRs were selected following a protocol registered with PROSPERO. Two independent reviewers were involved in the selection appraisal process, quality assessment and data extraction process. Six SRs met the inclusion criteria for this umbrella review. The six SRs concerned interventions delivered by computer programmes, cell-phones or other electronic devices. The studies in the SRs reported improvements to physiological well-being, health knowledge and self-management, as well as improvements in psychosocial outcomes. This umbrella review concludes with recommendations for community organizers, policy makers and researches for the formation of guidelines, inclusion of target community members in the development of eHealth interventions and directions for future research.
Objectives
Ethnic minorities (EM) are still underrepresented in research recruitment. Despite wide literature outlining the barriers, enablers and recommendations for driving inclusion and diversity in research, there is still little evidence for successful diversity in research participation, which has a direct impact on the quality of care provided to ethnically diverse individuals. A new, comprehensive approach to recruitment strategies is therefore necessary.
Study design
service improvement initiative.
Methods
In the light of the Covid-19 pandemic and the key public health need to address the disparity in care provided to non-white populations, we used a novel, comprehensive approach (The King's Model) comprising of local and community actions to promote inclusive research recruitment. We then compared rates of diverse recruitment in studies where the novel approach, was applied to studies which had been closed to recruitment at the time of analysis and where ethnicity data was available.
Results
Our results demonstrate that following the introduction of the King's Model for diverse recruitment, commercial interventional study diverse recruitment increased from 6.4% to 16.1%, and for non-commercial studies, from 30.2% to 41.0% and 59.2% in the selected studies.
Conclusions
King's Model is potentially a useful tool in enhancing non-Caucasian recruitment to clinical research. Enriched by additional recommendations based on our experiences during the Covid-19 research recruitment drive, we propose the King's Model is used to support ethnically diverse research recruitment. Further evidence is needed to replicate our findings, although this preliminary evidence provides granular details necessary to address the key unmet need of validating clinical research outcomes in non-white populations.
To maximise the potential for a study to achieve its goals and assess the efficacy or effectiveness of a creative arts therapy intervention, the trial team needs to recruit the predefined number of participants needed for statistical power. Successful recruitment of participants involves developing, monitoring, and adapting a recruitment strategy that aims to achieve this participant sample size. In this chapter, I provide an overview of issues related to successful or unsuccessful recruitment strategies including a review of why people choose or decline participation. The chapter describes approaches to recruit participants, in particular understanding the “market”, developing appropriate promotional materials, and assessing the impact of these within the market. I also describe how to engage industry partners and consumer representatives so that they become champions and assist in driving the recruitment strategy towards success. The next section of the chapter summaries approaches that the researcher might consider increasing the conversion rate of an expression of interest to participate to a full study enrolment. These considerations comprise harnessing participant trust, making efforts to minimise participant burden, and working closely with your recruitment team. Finally, the chapter includes considerations around participant retention and follow-up and motivating the team to sustain recruitment efforts.
Background
Enrollment of a representative sample of racial or ethnic-minority participants can be challenging for researchers conducting clinical trials. One proposed solution is race/ethnicity matching (i.e., aligning the racial or ethnic identity of the trial recruiter with that of the desired participant), but in practice this idea has yielded mixed results. Nevertheless, the approach seems inherently strong, so we reevaluated this strategy in a secondary analysis.
Methods
Black participant enrollment was tracked during the screening phase of two clinical trials led by the same PI and conducted in the same setting: the NICU of a midwestern academic hospital in a predominantly White locale. In the first trial, the recruiter was a White neonatal nurse practitioner from the NICU. In the second trial, the recruiter was a Black research nurse. In this evaluation of race/ethnicity matching, the number of Black women who enrolled into the screening phase of the two trials was compared.
Results
The Black research nurse enrolled twice as many Black participants into the screening phase of a clinical trial compared to the White NICU neonatal nurse practitioner (12.24% & 6.1%, respectively). The 6.14 percentage-point difference in Black participant enrollment is significant using Fisher's exact test (p = 0.035).
Conclusions
The key finding is that the Black recruiter enrolled a significantly greater number of Black participants than the White recruiter, suggesting that race/ethnicity matching is a viable strategy for increasing racial/ethnic minority participation in clinical studies.
Difficulty reaching Asian Americans with schizophrenia spectrum disorder has prompted mental health researchers to exclude this subpopulation from the sampling frame or enroll a comparatively smaller sample compared to other races and ethnicities with similar diagnoses. Understanding potential influences on research participation may facilitate efforts to increase the representation of this vulnerable yet underrepresented population in research. We detailed our experiences recruiting Asian Americans with schizophrenia spectrum disorder for participation in an observational study that evaluated their clinical outcomes. We applied the matching model of recruitment by identifying recruitment barriers encountered by or arising from the target group and researchers at the macro (community mental health center and academic institution), mediator (gatekeepers and research team), and micro (participant and interviewer) levels and then implementing a multilevel approach to overcoming identified obstacles. Our yearlong recruitment efforts yielded a diverse community sample (n = 75) recruited from six urban community mental health centers. Barriers to involving Asian Americans with schizophrenia spectrum disorder in research are complex and associated with being a member of a heterogeneous racial and ethnic minority group and having a serious psychiatric condition. Engaging Asian Americans with schizophrenia spectrum disorder in research is feasible if researchers devote time and resources to address barriers confronting the target group and challenges researchers encounter.
Background
People with asthma from ethnic minority groups experience significant morbidity. Culturally-specific interventions to reduce asthma morbidity are rare. We tested the hypothesis that a culturally-specific education programme, adapted from promising theory-based interventions developed in the USA, would reduce unscheduled care for South Asians with asthma in the UK.
Methods
A cluster randomised controlled trial, set in two east London boroughs. 105 of 107 eligible general practices were randomised to usual care or the education programme. Participants were south Asians with asthma aged 3 years and older with recent unscheduled care. The programme had two components: the Physician Asthma Care Education (PACE) programme and the Chronic Disease Self Management Programme (CDSMP), targeted at clinicians and patients with asthma respectively. Both were culturally adapted for south Asians with asthma. Specialist nurses, and primary care teams from intervention practices were trained using the PACE programme. South Asian participants attended an outpatient appointment; those registered with intervention practices received self-management training from PACE-trained specialist nurses, a follow-up appointment with PACE-trained primary care practices, and an invitation to attend the CDSMP. Patients from control practices received usual care. Primary outcome was unscheduled care.
Findings
375 south Asians with asthma from 84 general practices took part, 183 registered with intervention practices and 192 with control practices. Primary outcome data were available for 358/375 (95.5%) of participants. The intervention had no effect on time to first unscheduled attendance for asthma (Adjusted Hazard Ratio AHR = 1.19 95% CI 0.92 to 1.53). Time to first review in primary care was reduced (AHR = 2.22, (1.67 to 2.95). Asthma-related quality of life and self-efficacy were improved at 3 months (adjusted mean difference -2.56, (-3.89 to -1.24); 0.44, (0.05 to 0.82) respectively.
Conclusions
A multi-component education programme adapted for south Asians with asthma did not reduce unscheduled care but did improve follow-up in primary care, self-efficacy and quality of life. More effective interventions are needed for south Asians with asthma.
Background:
It is well established that there are ethnic inequalities in health in the UK; however, such inequalities in later life remain a relatively under-researched area. This paper explores ethnic inequalities in health among older people in the UK, controlling for social and economic disadvantages.
Methods:
This paper analyses the first wave (2009-2011) of Understanding Society to examine differentials in the health of older persons aged 60 years and over. 2 health outcomes are explored: the extent to which one's health limits the ability to undertake typical activities and self-rated health. Logistic regression models are used to control for a range of other factors, including income and deprivation.
Results:
After controlling for social and economic disadvantage, black and minority ethnic (BME) elders are still more likely than white British elders to report limiting health and poor self-rated health. The 'health disadvantage' appears most marked among BME elders of South Asian origin, with Pakistani elders exhibiting the poorest health outcomes. Length of time resident in the UK does not have a direct impact on health in models for both genders, but is marginally significant for women.
Conclusions:
Older people from ethnic minorities report poorer health outcomes even after controlling for social and economic disadvantages. This result reflects the complexity of health inequalities among different ethnic groups in the UK, and the need to develop health policies which take into account differences in social and economic resources between different ethnic groups.
Background:
In the United Kingdom, men of Bangladeshi and Pakistani origin have higher smoking rates than the general population. This makes non-smokers in their households more vulnerable to second-hand smoke (SHS) exposure than the general population.
Aims:
The aim of this study was to investigate the feasibility of implementing and pilot testing the effectiveness and cost-effectiveness of a 'Smoke-free Homes' (SFH) intervention in Islamic religious settings to encourage families of Bangladeshi and Pakistani origin to apply smoking restrictions in their homes.
Methods:
We allocated Islamic religious settings (clusters) to either receive SFH-an educational intervention-or to a control arm. Within each cluster, we recruited households with at least one smoker and one non-smoker. SHS exposure among non-smokers was measured using salivary cotinine.
Results:
Seven (50%) clusters were randomised to each trial arm. A total of 468 households were assessed for eligibility and 62% (n=289) were eligible, of which 74% (n=213) agreed to participate in the trial. Six of the seven intervention clusters delivered the intervention, and all clusters were retained throughout the trial. In all, 81% (n=172) of households provided data at follow-up. No evidence of a difference in log cotinine level was observed (adjusted mean difference -0.02, 95% confidence interval (CI) -1.28-1.23, P=0.97) between the two trial arms. The direct mean cost of delivering the intervention was £18.18 per household (range £3.55-42.20).
Conclusions:
It was possible to recruit, randomise and retain Islamic religious settings and participant households. However, some of the original assumptions, in particular our ability to collect primary outcome data, need to be revisited before a definitive trial.
Background:
In the United Kingdom, ethnic minority group's particularly British South Asian women have higher rates of depression than their white counterparts. Despite this they remain under represented in mental health trials. Whilst the US legislation mandates the inclusion of ethnic minorities into research, there are no similar initiatives in the UK. Barriers in recruiting these hard to reach ethnic groups are cited as major reasons behind this under representation. Once these barriers are encountered it becomes a challenge for the researchers to overcome them. As there is paucity of research in this specific area through this paper we want to share our strategies in recruiting British South Asians thus encouraging other researchers to consider ethnic minority inclusion into research.
Methods:
Our published systematic review on the barriers to recruitment of ethnic minority participants into mental health research developed a typology of thirty three ethnic recruitment barriers described under five themes. We aimed to find strategies to overcome these barriers from five depression trials for British South Asians conducted by our research group. Firstly we extracted data on recruitment strategies from the published papers. Later researchers involved in these five trials formed a working group to add to these extracted strategies. Finally these strategies were matched to the individual barriers described in the typology.
Results:
Multiple recruitment strategies were described by the researchers. These strategies were matched to all but two recruitment barriers related to psychopathology/substance misuse by the participants and paucity of healthcare related resources. Multiple strategies were found to be effective against each barrier and appropriate ones could be selected by the researchers after considering available resources at hand.
Conclusions:
Findings from this paper have implications for the design of recruitment strategies for hard to recruit ethnic minority groups to health care research. There is need for wider training and support of researchers to give them the skills to recruit these ethnic groups. Further development and evaluation of these strategies will lead to increased recruitment accruals.
The ethnic minority population in developed countries is increasing over time. These groups are at higher risk of mental illness and demonstrate lower participation in research. Published evidence suggests that multiple factors like stigma, lack of trust, differences in explanatory models, logistical issues and lack of culturally aware researchers act as barriers to ethnic minority recruitment into mental health research. To reduce inequalities in participation, there is a need to devise innovative and culturally sensitive recruitment strategies. It is important that researchers share their experience of employing these strategies so that ethnic minority participation can be facilitated.
We previously published a systematic review of barriers to recruiting ethnic minority participants into mental health research. The nine papers included in our prior review formed the basis for developing a typology of barriers to recruiting ethnic minorities into mental health research. This typology identified 33 barriers, described under five themes. We further extracted data on the strategies used to overcome these recruitment barriers, as described in the included studies.
The strategies employed by the authors could be matched to all but two barriers (psychopathology/substance misuse and limited resource availability). There was evidence that multiple strategies were employed, and that these depended upon the population, clinical set-up and resources available.
This typology of strategies to overcome barriers to recruiting ethnic minorities provides guidance on achieving higher rates of recruitment. It is important that researchers plan to deploy these strategies well in advance of initiating recruitment. Whilst adopting these strategies, the authors have not been able to quantify the positive impact of these strategies on recruitment. The typology should encourage researchers to employ these strategies in future research, refine them further and quantitatively evaluate their impact.
The susceptibility to type 2 diabetes of people of south Asian descent is established, but there is little trial-based evidence for interventions to tackle this problem. We assessed a weight control and physical activity intervention in south Asian individuals in the UK.
We did this non-blinded trial in two National Health Service (NHS) regions in Scotland (UK). Between July 1, 2007, and Oct 31, 2009, we recruited men and women of Indian and Pakistani origin, aged 35 years or older, with waist circumference 90 cm or greater in men or 80 cm or greater in women, and with impaired glucose tolerance or impaired fasting glucose determined by oral glucose tolerance test. Families were randomised (using a random number generator program, with permuted blocks of random size, stratified by location [Edinburgh or Glasgow], ethnic group [Indian or Pakistani], and number of participants in the family [one vs more than one]) to intervention or control. Participants in the same family were not randomised separately. The intervention group received 15 visits from a dietitian over 3 years and the control group received four visits in the same period. The primary outcome was weight change at 3 years. Analysis was by modified intention to treat, excluding participants who died or were lost to follow-up. We used linear regression models to provide mean differences in baseline-adjusted weight at 3 years. This trial is registered, number ISRCTN25729565.
Of 1319 people who were screened with an oral glucose tolerance test, 196 (15%) had impaired glucose tolerance or impaired fasting glucose and 171 entered the trial. Participants were in 156 family clusters that were randomised (78 families with 85 participants were allocated to intervention; 78 families with 86 participants were allocated to control). 167 (98%) participants in 152 families completed the trial. Mean weight loss in the intervention group was 1·13 kg (SD 4·12), compared with a mean weight gain of 0·51 kg (3·65) in the control group, an adjusted mean difference of -1·64 kg (95% CI -2·83 to -0·44).
Modest, medium-term changes in weight are achievable as a component of lifestyle-change strategies, which might control or prevent adiposity-related diseases.
National Prevention Research Initiative, NHS Research and Development; NHS National Services Scotland; NHS Health Scotland.
Background The effectiveness of salt restriction to lower blood pressure (BP) in Bangladeshi patients with chronic kidney disease (CKD) is uncertain.
Objective To test the hypothesis that a tailored intervention intended to reduce salt intake in addition to standard care will achieve a greater reduction in BP in UK Bangladeshi patients with CKD than standard care alone.
Design A randomised parallel-group controlled trial conducted over a 6 month period.
Setting A tertiary renal unit based in acute care hospital in East London.
Participants 56 adult participants of Bangladeshi origin with CKD and BP >130/80 mm Hg or on antihypertensive medication.
Intervention Participants were randomly allocated to receive a tailored low-salt diet or the standard low-salt advice. BP medication, physical activity and weight were monitored.
Main outcome measures The primary outcome was change in ambulatory BP. Adherence to dietary advice was assessed by measurement of 24 h urinary salt excretion.
Results Of 56 participants randomised, six withdrew at the start of the study. During the study, one intervention group participant died, one control group participant moved to Bangladesh. Data were available for the primary endpoint on 48 participants. Compared with control group the intervention urinary sodium excretion fell from 260 mmol/d to 103 mmol/d (−131 to −76, p<0.001) at 6 months and resulted in mean (95% CI) falls in 24 h systolic/diastolic BP of −8 mm Hg (−11 to −5)/2 (−4 to −2) both p<0.001.
Conclusions A tailored intervention can achieve moderate salt restriction in patients with CKD, resulting in clinically meaningful falls in BP independent of hypertensive medication.
Trial Registration ClinicalTrials.gov NCT00702312.
Background
Black and Minority Ethnic (BME) groups in receipt of specialist mental health care have reported higher rates of detention under the mental health act, less use of psychological therapies, and more dissatisfaction. Although many explanations have been put forward to explain this, a failure of therapeutic communications may explain poorer satisfaction, disengagement from services and ethnic variations in access to less coercive care. Interventions that improve therapeutic communications may offer new approaches to tackle ethnic inequalities in experiences and outcomes.
Methods
The THERACOM project is an HTA-funded evidence synthesis review of interventions to improve therapeutic communications between black and minority ethnic patients in contact with specialist mental health services and staff providing those services. This article sets out the protocol methods for a necessarily broad review topic, including appropriate search strategies, dilemmas for classifying different types of therapeutic communications and expectations of the types of interventions to improve them. The review methods will accommodate unexpected types of study and interventions. The findings will be reported in 2013, including a synthesis of the quantitative and grey literature.
Discussion
A particular methodological challenge is to identify and rate the quality of many different study types, for example, randomised controlled trials, observational quantitative studies, qualitative studies and case studies, which comprise the full range of hierarchies of evidence. We discuss the preliminary methodological challenges and some solutions. (PROSPERO registration number: CRD42011001661).
Background: Depressive disorders are common in women of Pakistani origin living in the UK. In a pilot study we developed and tested a culturally sensitive social group intervention for persistently depressed Pakistani women. Methods: A total of 55 persistently depressed women were identified in a population-based study. The first consecutive 18 who agreed to participate were enrolled into the study. Out of these, eight women dropped out before the start of the intervention, one woman attended the first session only and nine women attended 10 weekly sessions of the group. Outcome measures at baseline and at the end of the intervention were the 20 item Self Reporting Questionnaire (SRQ) and the Schedule for Clinical Assessment in Neuropsychiatry (SCAN). Results: All 9 women attended at least six of the 10 sessions. Mean SRQ score at baseline was 15.0 (SD ¼ 3.08) and 11.7 (SD ¼ 5.95) at the end of the intervention (p ¼ 0.039). Three women reported reduction in suicidal ideas. Conclusions: A culturally appropriate social intervention successfully brought together a group of isolated chronically depressed Pakistani women, enabling them to form informal networks and forming the basis of an RCT to treat the depression.
Coronary heart disease (CHD) is highly prevalent amongst the South Asian communities in Britain. The reasons for this excess CHD risk are multifactorial, but in part relate to a susceptibility to diabetes mellitus - where the aberrant metabolism of non-esterified fatty acids (NEFA) and glucose are likely to underpin vascular disease in this population. Dietary intervention is an important and first line approach to manage increased CHD risk. However, there is limited information on the impact of the South Asian diet on CHD risk.
The Diabetes Health, Residence & Metabolism in Asians (DHRMA) study is a blinded, randomised, placebo controlled trial that analyses the efficacy of reduced glycaemic index (GI) staples of the South Asian diet, in relation to cardio-metabolic risk factors that are commonly perturbed amongst South Asian populations - primarily glucose, fatty acid and lipoprotein metabolism and central adiposity. Using a 10-week dietary intervention study, 50 healthy South Asians will be randomised to receive either a DHRMA (reduced GI) supply of chapatti (bread), stone ground, high protein wheat flour and white basmati rice (high bran, unpolished) or commercially available (leading brand) versions chapatti wheat flour and basmati rice. Volunteers will be asked to complete a 75g oral glucose tolerance test at baseline and at 10-weeks follow-up, where blood metabolites and hormones, blood pressure and anthropometry will also be assessed in a standardised manner.
It is anticipated that the information collected from this study help develop healthy diet options specific (but not exclusive) for South Asian ethnic communities. Trial registration Current Controlled Trials ISRCTN02839188.
Smoking prevalence is high among Pakistani and Bangladeshi men in the UK, but there are few tailored smoking cessation programmes for Pakistani and Bangladeshi communities. The aim of this study was to pilot a cluster randomised controlled trial comparing the effectiveness of Pakistani and Bangladeshi smoking cessation outreach workers with standard care to improve access to and the success of English smoking cessation services.
A pilot cluster randomised controlled trial was conducted in Birmingham, UK. Geographical lower layer super output areas were used to identify natural communities where more than 10% of the population were of Pakistani and Bangladeshi origin. 16 agglomerations of super output areas were randomised to normal care controls vs. outreach intervention. The number of people setting quit dates using NHS services, validated abstinence from smoking at four weeks, and stated abstinence at three and six months were assessed. The impact of the intervention on choice and adherence to treatments, attendance at clinic appointments and patient satisfaction were also assessed.
We were able to randomise geographical areas and deliver the outreach worker-based services. More Pakistani and Bangladeshi men made quit attempts with NHS services in intervention areas compared with control areas, rate ratio (RR) 1.32 (95%CI: 1.03-1.69). There was a small increase in the number of 4-week abstinent smokers in intervention areas (RR 1.30, 95%CI: 0.82-2.06). The proportion of service users attending weekly appointments was lower in intervention areas than control areas. No difference was found between intervention and control areas in choice and adherence to treatments or patient satisfaction with the service. The total cost of the intervention was £124,000; an estimated cost per quality-adjusted life year (QALY) gained of £8,500.
The intervention proved feasible and acceptable. Outreach workers expanded reach of smoking cessation services in diverse locations of relevance to Pakistani and Bangladeshi communities. The outreach worker model has the potential to increase community cessation rates and could prove cost-effective, but needs evaluating definitively in a larger, appropriately powered, randomised controlled trial. These future trials of outreach interventions need to be of sufficient duration to allow embedding of new models of service delivery.
Current Controlled Trials ISRCTN82127540.
British Pakistani women have a high prevalence of depression. There are no reported psychosocial interventions for depression in ethnic minorities in the UK.
To determine the efficacy of a social group intervention compared with antidepressants, and whether the combination of the two is more efficacious than either alone.
A total of 123 women with depression participated in the primary care-based cluster randomised controlled trial (ISRCTN19172148). Outcome measures were severity of depression (Hamilton Rating Scale for Depression), social functioning and satisfaction at 3 and 9 months.
Greater improvement in depression in the social intervention group and the combined treatment group compared with those receiving antidepressants alone fell short of significance. There was significantly greater improvement in social functioning in the social intervention and combined treatment groups than in the antidepressant group at both 3 and 9 months.
Pakistani women with depression found the social groups acceptable and their social function and satisfaction improved if they received social treatment compared with the receipt of antidepressants alone.
no model of self-management education or peer support has yet achieved widespread reach and acceptability with minority ethnic groups. We sought to refine and test a new complex intervention in diabetes education: informal story-sharing groups facilitated by bilingual health advocates.
pilot randomized trial with in-depth process evaluation in a socioeconomically deprived area. 157 people referred for diabetes education were randomized by concealed allocation to an intervention (story-sharing group in their own language) or control ('usual care' self-management education, through an interpreter if necessary) arm. Story-sharing groups were held in five ethnic languages and English (for African Caribbeans), and ran fortnightly for six months. Primary outcome was UKPDS (UK Prospective Diabetes Study) risk score. Secondary outcomes included attendance, HbA1c, well-being and enablement. Process measures included ethnographic observation, and qualitative interviews with staff and patients.
some follow-up data were obtained on 87% of participants. There was no significant difference between intervention and control arms in biomedical outcomes. Attendance was 79% in the story-sharing arm and 35% in the control arm (p < 0.0001), and patient enablement scores were significantly higher (8.3 compared to 5.9, p < 0.005). The model was very popular with clinicians, managers and patients, which helped overcome numerous challenges to its successful embedding in a busy public sector diabetes service.
people from minority ethnic groups in a socioeconomically deprived area were keen to attend informal story-sharing groups and felt empowered by them, but clinical outcomes were no better than with conventional education. Further research is needed to maximize the potential and evaluate the place of this appealing service model before it is introduced as a part of mainstream diabetes services.
To investigate the feasibility and effectiveness of a needs-led, community-based intervention for treating individuals from black minority ethnic (BME) groups with common mental disorders.
Forty eligible individuals from BME groups were randomised to a needs-led package of care (therapy based on the principles of cognitive behaviour therapy and ethnically matched therapists, advocacy and mentoring; 'rapid access') or to a 3-month waiting list control with information on local mental health services ('standard access').
At 3-month follow-up, individuals in the rapid access group showed significantly improved levels of depression (GHQ-28 adjusted p<0.05) although there was no evidence for difference in general functioning (GAF, p=0.87). The intervention was found to be culturally appropriate and acceptable among users and did not result in significantly increased costs.
The exploratory study sample was small with low power and therefore the statistical certainty may be limited.
Effective and culturally acceptable psychosocial interventions can be delivered in the community to individuals from BME groups with anxiety and depression with no significant cost implications.
To evaluate the effect of two forms of postnatal social support for disadvantaged inner city mothers on maternal and child health outcomes.
Randomised controlled trial with economic and process evaluations and follow up at 12 and 18 months. The two intervention groups received either the offer of a year of monthly supportive listening home visits by a support health visitor (SHV), or a year of support from community groups providing drop in sessions, home visiting and/or telephone support (CGS). Each was compared with a control group that received standard health visitor services.
Two disadvantaged boroughs of London, United Kingdom.
731 women from culturally diverse backgrounds with infants.
At 12 and 18 months, there was little impact for either intervention on the main outcomes: child injury (SHV: relative risk 0.99; 95% confidence intervals 0.68 to 1.45, CGS: 0.91; 0.61 to1.36), maternal smoking (SHV: 0.86; 0.62 to 1.19, CGS: 0.97; 0.72 to 1.33) or maternal depression (SHV: 0.86; 0.62 to1.19, CGS: 0.93; 0.69 to 1.27). SHV women had different patterns of health service use (with fewer taking their children to the GP) and had less anxious experiences of motherhood than control women. User satisfaction with the SHV intervention was high. Uptake of the CGS intervention was low: 19%, compared with 94% for the SHV intervention.
There was no evidence of impact on the primary outcomes of either intervention among this culturally diverse population. The SHV intervention was associated with improvement in some of the secondary outcomes.
Background: Delivering high quality and evidence based healthcare to deprived sectors of the community is a major goal for society. We investigated the effectiveness of a culturally sensitive enhanced care package in UK general practice in improving cardiovascular risk factors in South Asian patients with type 2 diabetes. Methods: 21 inner city practices were randomised to intervention (enhanced practice nurse time, link worker and diabetes specialist nurse support) (n=868) or control (standard care) (n=618) groups. Prescribing algorithms with clearly defined targets were provided for all practices. Main outcome measures comprised changes in blood pressure, total cholesterol and glycaemic control (HbA1c) after 2 years. Findings: At baseline, groups were similar with respect to age, sex and cardiovascular risk factors. Comparing treatment groups, after adjustment for confounders, and clustering, differences in diastolic blood pressure (1.91mmHg, P=0.0001) and mean arterial pressure (1.36mmHg, P=0.0180) were significant. There were no significant differences between groups for total cholesterol or HbA1c. Economic analysis indicates the nurse-led intervention was not cost-effective. Across the whole study population systolic blood pressure, diastolic blood pressure and cholesterol decreased significantly by 4.9mmHg, 3.8mmHg and 0.45mmol/L respectively, but there was no change in HbA1c. Interpretation: Additional, although limited, benefits were observed from our culturally enhanced care package over and above the secular changes achieved in the UK in recent years. Stricter targets in general practice and further measures to motivate patients are needed to maximise healthcare outcomes in South Asian patients with diabetes.
Ethnic/racial inequalities in access to and quality of healthcare have been repeatedly documented in the USA. Although there is some evidence of inequalities in England, research is not so extensive. Ethnic inequalities in use of primary and secondary health services, and in outcomes of care, were examined in England.
Four waves of the Health Survey for England were analysed, a representative population survey with ethnic minority oversamples. Outcome measures included use of primary and secondary healthcare services and clinical outcomes of care (controlled, uncontrolled and undiagnosed) for three conditions - hypertension, raised cholesterol and diabetes.
Ethnic minority respondents were not less likely to use GP services. For example, the adjusted odds ratios for Indian, Pakistani and Bangladeshi versus white respondents were 1.29 (95% confidence intervals 1.07 to 1.54), 1.32 (1.10 to 1.58) and 1.35 (1.10 to 1.65) respectively. Similarly, there were no ethnic inequalities for the clinical outcomes of care for hypertension and raised cholesterol, and, on the whole, no inequalities in outcomes of care for diabetes. There were ethnic inequalities in access to hospital services, and marked inequalities in use of dental care.
Ethnic inequalities in access to healthcare and the outcomes of care for three conditions (hypertension, raised cholesterol and diabetes), for which treatment is largely provided in primary care, appear to be minimal in England. Although inequalities may exist for other conditions and other healthcare settings, particularly internationally, the implication is that ethnic inequalities in healthcare are minimal within NHS primary care.
We compared depression, social stress and treatment in people of Pakistani origin and white Europeans living in an UK city.
In a population-based two-phase sample of 1,856 adults we interviewed 651 (77%) of eligible participants, using the schedule for clinical assessment in neuropsychiatry and life events and difficulties schedule. We identified 216 people with depressive and 208 with subthreshold disorder; after 6-months we re-interviewed 398 (94% response).
Depressive disorder was more common in Pakistani women only (31.1% [24.1-38.0] vs.19.3% [14.1-24.5]) and persisted more often in Pakistanis over 50 years of age (90 vs.66%, P = 0.023). New episodes of depressive disorder occurred in 17% of participants who had subthreshold disorder at baseline in each ethnic group. Persistent depression in the Pakistani group was associated with continuing problems of disabling physical illness and close relationships. Treatment was limited and not associated with persistent depression.
Persistent depressive disorder in older people of Pakistani origin is associated with potentially remediable factors.
The National Service Framework for Mental Health emphasises inequities in care across ethnic groups in the UK. This, coupled with the Royal College of Psychiatrists' resolve to address concerns about institutionalised racism, promises a fundamental change in existing clinical practice. Practitioners
Excluding patients of ethnic minority groups from clinical
trials is unethical, introduces substantial bias, and
means that findings are based on unrepresentative
populations. The National Institutes of Health Revitalization
Act 1993 requires that all minority groups be represented
in the sample in research projects supported
by the National Institutes of Health, unless there is a
clear and compelling justification not to do so. In the
United Kingdom no such legislation exists.
There is little population-based evidence on ethnic variation in the most common mental disorders (CMD), anxiety and depression. We compared the prevalence of CMD among representative samples of White, Irish, Black Caribbean, Bangladeshi, Indian and Pakistani individuals living in England using a standardized clinical interview.
Cross-sectional survey of 4281 adults aged 16-74 years living in private households in England. CMD were assessed using the Revised Clinical Interview Schedule (CIS-R), a standardized clinical interview.
Ethnic differences in the prevalence of CMD were modest, and some variation with age and sex was noted. Compared to White counterparts, the prevalence of CMD was higher to a statistically significant degree among Irish [adjusted rate ratios (RR) 2.09, 95% CI 1.16-2.95, p = 0.02] and Pakistani (adjusted RR 2.38, 95 % CI 1.25-3.53, p = 0.02) men aged 35-54 years, even after adjusting for differences in socio-economic status. Higher rates of CMD were also observed among Indian and Pakistani women aged 55-74 years, compared to White women of similar age. The prevalence of CMD among Bangladeshi women was lower than among White women, although this was restricted to those not interviewed in English. There were no differences in rates between Black Caribbean and White samples.
Middle-aged Irish and Pakistani men, and older Indian and Pakistani women, had significantly higher rates of CMD than their White counterparts. The very low prevalence of CMD among Bangladeshi women contrasted with high levels of socio-economic deprivation among this group. Further study is needed to explore reasons for this variation.
Reducing the impact of chronic disease in minority ethnic groups is an important public health challenge. Lay-led education may overcome cultural and language barriers that limit the effectiveness of professionally-led programmes. We report the first randomised trial of a lay-led self-management programme - the Chronic Disease Self-Management Programme (CDSMP) (Expert Patient Programme) - in a south Asian group.
To determine the effectiveness of a culturally-adapted lay-led self-management programme for Bangladeshi adults with chronic disease.
Randomised controlled trial.
Tower Hamlets, east London.
We recruited Bangladeshi adults with diabetes, cardiovascular disease, respiratory disease or arthritis from general practices and randomised them to the CDSMP or waiting-list control. Self-efficacy (primary outcome), self-management behaviour, communication with clinician, depression scores, and healthcare use were assessed by blinded interviewer-administered questionnaires in Sylheti before randomisation and 4 months later.
Of the 1363 people invited, 476 (34%) agreed to take part and 92% (439/476) of participants were followed up. The programme improved self-efficacy (difference: 0.67, 95% confidence interval [CI] = 0.08 to 1.25) and self-management behaviour (0.53; 95% CI = 0.01 to 1.06). In the 51% (121/238) of intervention participants attending three or more of the 6-weekly education sessions the programme led to greater improvements in self-efficacy (1.47; 95% CI = 0.50 to 1.82) and self-management behaviour (1.16; 95% CI = 0.50 to 1.82), and reduced HADS depression scores (0.64; 95% CI = 0.07 to 1.22). Communication and healthcare use were not significantly different between groups. The programme cost pound123 (181) per participant.
A culturally-adapted CDSMP improves self-efficacy and self-care behaviour in Bangladeshi patients with chronic disease. Effects on health status were marginal. Benefits were limited by moderate uptake and attendance.
Epidemiologic data have shown that the prevalence of Type 2 diabetes varies with ethnic origin. Type 2 diabetes is up to four times more common in British South Asians than in the indigenous white population. The aim of this study was to develop a culturally appropriate educational intervention programme for South Asians with Type 2 diabetes. We then investigated whether this intervention could produce an improvement, and finally whether any improvement was greater than background changes in knowledge in comparison groups.
A multi-site prospective, randomised controlled study was conducted in all day care centres and three general practice registers with high proportion patients from different ethnic minority groups in Glasgow, Scotland. The intervention consisted of 18 educational sessions in 6 separate programmes. A modified questionnaire was used to measure the knowledge, attitudes, and practice of diabetes before and after intervention.
Baseline assessment showed that Indian and Pakistani subjects had less knowledge about diabetes, regarded the disease less seriously, and had a lesser understanding of the relationship between control and complications than the white population. No differences in initial responses were found between those who completed the second assessment and those who did not. The intervention group showed significant improvements in scores for Knowledge (+12.5%); Attitudes toward seriousness (+13.5%), complications (+8.1%), Practice (+20.0%). However there were also changes in the ethnic control group scores; respectively +5.0%, +16.3% (significant P < 0.001), +1.5%, +1.7%. The single white control group also showed some improvements; respectively +12.2%, +12.4% (P = 0.04), +6.0%, +25.0% (P = 0.007), but the differences in improvement between these two control groups were not significant. Overall, the improvement seen was similar in both intervention and ethnic control groups and there was no significant difference in the amount of change (P = 0.36 CI -0.9 to +2.6).
This study has shown that conducting a culturally-competent educational intervention in patients with Type 2 diabetes from ethnic minority groups is feasible and can improve their knowledge and attitudes and practice. However there was no net benefit compared with the control group.
To compare the outcomes of home-based (using the Heart Manual) and centre-based cardiac rehabilitation programmes.
Randomised controlled trial and parallel economic evaluation.
Predominantly inner-city, multi-ethnic population in the West Midlands, England.
525 patients referred to four hospitals for cardiac rehabilitation following myocardial infarction or coronary revascularisation.
A home-based cardiac rehabilitation programme compared with centre-based programmes.
Smoking cessation, blood pressure (systolic blood pressure (SBP), diastolic blood pressure (DBP)), total cholesterol (TC) and high-density lipoprotein (HDL)-cholesterol, psychological status (HADS anxiety and depression) and exercise capacity (incremental shuttle walking test, ISWT) measured at 12 months. Health service resource use, quality of life utility and costs were quantified.
There were no significant differences in the main outcomes when the home-based was compared with the centre-based programme at 12 months. Adjusted mean difference (95% CI) for SBP was 1.94 mm Hg (-1.1 to 5.0); DBP 0.42 mm Hg (-1.25 to 2.1); TC 0.1 mmol/l (-0.05 to 0.24); HADS anxiety -0.02 (-0.69 to 0.65); HADS depression -0.35 (-0.95 to 0.25); distance on ISWT -21.5 m (-48.3 to 5.2). The relative risk of being a smoker in the home arm was 0.90. The cost per patient to the NHS was significantly higher in the home arm at 198 pounds, (95% CI 189 to 208) compared to 157 pounds (95% CI 139 to 175) in the centre-based arm. However when the patients' cost of travel was included, these differences were no longer significant. Conclusions A home-based cardiac rehabilitation programme does not produce inferior outcomes when compared to traditional centre-based programmes as provided in the United Kingdom.
Delivery of high-quality, evidence-based health care to deprived sectors of the community is a major goal for society. We investigated the effectiveness of a culturally sensitive, enhanced care package in UK general practices for improvement of cardiovascular risk factors in patients of south Asian origin with type 2 diabetes.
In this cluster randomised controlled trial, 21 inner-city practices in the UK were assigned by simple randomisation to intervention (enhanced care including additional time with practice nurse and support from a link worker and diabetes-specialist nurse [nine practices; n=868]) or control (standard care [12 practices; n=618]) groups. All adult patients of south Asian origin with type 2 diabetes were eligible. Prescribing algorithms with clearly defined targets were provided for all practices. Primary outcomes were changes in blood pressure, total cholesterol, and glycaemic control (haemoglobin A1c) after 2 years. Analysis was by intention to treat. This trial is registered, number ISRCTN 38297969.
We recorded significant differences between treatment groups in diastolic blood pressure (1.91 [95% CI -2.88 to -0.94] mm Hg, p=0.0001) and mean arterial pressure (1.36 [-2.49 to -0.23] mm Hg, p=0.0180), after adjustment for confounders and clustering. We noted no significant differences between groups for total cholesterol (0.03 [-0.04 to 0.11] mmol/L), systolic blood pressure (-0.33 [-2.41 to 1.75] mm Hg), or HbA1c (-0.15% [-0.33 to 0.03]). Economic analysis suggests that the nurse-led intervention was not cost effective (incremental cost-effectiveness ratio pound28 933 per QALY gained). Across the whole study population over the 2 years of the trial, systolic blood pressure, diastolic blood pressure, and cholesterol decreased significantly by 4.9 (95% CI 4.0-5.9) mm Hg, 3.8 (3.2-4.4) mm Hg, and 0.45 (0.40-0.51) mmol/L, respectively, and we recorded a small and non-significant increase for haemoglobin A1c (0.04% [-0.04 to 0.13]), p=0.290).
We recorded additional, although small, benefits from our culturally tailored care package that were greater than the secular changes achieved in the UK in recent years. Stricter targets in general practice and further measures to motivate patients are needed to achieve best possible health-care outcomes in south Asian patients with diabetes.
Background: Depression is common in young people. It has a marked negative impact and is associated with self-harm and suicide. Preventing its onset would be an important advance in public health. This is an update of a Cochrane review that was last updated in 2011.
Objectives: To determine whether evidence-based psychological interventions (including cognitive behavioural therapy (CBT), interpersonal therapy (IPT) and third wave CBT)) are effective in preventing the onset of depressive disorder in children and adolescents.
Search methods: We searched the specialised register of the Cochrane Common Mental Disorders Group (CCMDCTR to 11 September 2015), which includes relevant randomised controlled trials from the following bibliographic databases: The Cochrane Library (all years), EMBASE (1974 to date), MEDLINE (1950 to date) and PsycINFO (1967 to date). We searched conference abstracts and reference lists of included trials and reviews, and contacted experts in the field.
Selection criteria: We included randomised controlled trials of an evidence-based psychological prevention programme compared with any comparison control for young people aged 5 to 19 years, who did not currently meet diagnostic criteria for depression.
Data collection and analysis: Two authors independently assessed trials for inclusion and rated their risk of bias. We adjusted sample sizes to take account of cluster designs and multiple comparisons. We contacted trial authors for additional information where needed. We assessed the quality of evidence for the primary outcomes using GRADE.
Main results: We included 83 trials in this review. The majority of trials (67) were carried out in school settings with eight in colleges or universities, four in clinical settings, three in the community and four in mixed settings. Twenty-nine trials were carried out in unselected populations and 53 in targeted populations. For the primary outcome of depression diagnosis at medium-term follow-up (up to 12 months), there were 32 trials with 5965 participants and the risk of having a diagnosis of depression was reduced for participants receiving an intervention compared to those receiving no intervention (risk difference (RD) -0.03, 95% confidence interval (CI) -0.05 to -0.01; P value = 0.01). We rated this evidence as moderate quality according to the GRADE criteria. There were 70 trials (73 trial arms) with 13,829 participants that contributed to the analysis for the primary outcome of depression symptoms (self-rated) at the post-intervention time point, with results showing a small but statistically significant effect (standardised mean difference (SMD) -0.21, 95% CI -0.27 to -0.15; P value < 0.0001). This effect persisted to the short-term assessment point (up to three months) (SMD -0.31, 95% CI -0.45 to -0.17; P value < 0.0001; 16 studies; 1558 participants) and medium-term (4 to 12 months) assessment point (SMD -0.12, 95% CI -0.18 to -0.05; P value = 0.0002; 53 studies; 11,913 participants); however, the effect was no longer evident at the long-term follow-up. We rated this evidence as low to moderate quality according to the GRADE criteria. The evidence from this review is unclear with regard to whether the type of population modified the overall effects; there was statistically significant moderation of the overall effect for depression symptoms (P value = 0.0002), but not for depressive disorder (P value = 0.08). For trials implemented in universal populations there was no effect for depression diagnosis (RD -0.01, 95% CI -0.03 to 0.01) and a small effect for depression symptoms (SMD -0.11, 95% CI -0.17 to -0.05). For trials implemented in targeted populations there was a statistically significantly beneficial effect of intervention (depression diagnosis RD -0.04, 95% CI -0.07 to -0.01; depression symptoms SMD -0.32, 95% CI -0.42 to -0.23). Of note were the lack of attention placebo-controlled trials in targeted populations (none for depression diagnosis and four for depression symptoms). Among trials implemented in universal populations a number used an attention placebo comparison in which the intervention consistently showed no effect.
Authors' conclusions: Overall the results show small positive benefits of depression prevention, for both the primary outcomes of self-rated depressive symptoms post-intervention and depression diagnosis up to 12 months (but not beyond). Estimates of numbers needed to treat to benefit (NNTB = 11) compare well with other public health interventions. However, the evidence was of moderate to low quality using the GRADE framework and the results were heterogeneous. Prevention programmes delivered to universal populations showed a sobering lack of effect when compared with an attention placebo control. Interventions delivered to targeted populations, particularly those selected on the basis of depression symptoms, had larger effect sizes, but these seldom used an attention placebo comparison and there are practical difficulties inherent in the implementation of targeted programmes. We conclude that there is still not enough evidence to support the implementation of depression prevention programmes. Future research should focus on current gaps in our knowledge. Given the relative lack of evidence for universal interventions compared with attention placebo controls and the poor results from well-conducted effectiveness trials of universal interventions, in our opinion any future such trials should test a depression prevention programme in an indicated targeted population using a credible attention placebo comparison group. Depressive disorder as the primary outcome should be measured over the longer term, as well as clinician-rated depression. Such a trial should consider scalability as well as the potential for the intervention to do harm.
Background
Communication may be an influential determinant of inequality of access to, engagement with and benefit from psychiatric services.AimsTo review the evidence on interventions designed to improve therapeutic communications between Black and minority ethnic patients and clinicians who provide care in psychiatric services.Method
Systematic review and evidence synthesis (PROSPERO registration: CRD42011001661). Data sources included the published and the 'grey' literature. A survey of experts and a consultation with patients and carers all contributed to the evidence synthesis, interpretation and recommendations.ResultsTwenty-one studies were included in our analysis. The trials showed benefits mainly for depressive symptoms, experiences of care, knowledge, stigma, adherence to prescribed medication, insight and alliance. The effect sizes were smaller for better-quality trials (range of d 0.18-0.75) than for moderate- or lower-quality studies (range of d 0.18-4.3). The review found only two studies offering weak economic evidence.Conclusions
Culturally adapted psychotherapies, and ethnographic and motivational assessment leading to psychotherapies were effective and favoured by patients and carers. Further trials are needed from outside of the UK and USA, as are economic evaluations and studies of routine psychiatric care practices.
© The Royal College of Psychiatrists 2015.
Attendance at diabetic retinopathy screening in minority ethnic groups, including the South Asian population, is known to be poor. We describe a cluster randomised controlled trial conducted in 10 general practitioner (GP) surgeries in Coventry, UK, during 2007 which aimed to evaluate the use of a Link Worker-delivered intervention to improve attendance. The intervention consisted of a simple telephone reminder with the main outcome measure being attendance at diabetic retinopathy screening. We found a statistically significant difference between mean attendance proportions for intervention (0.89) and control (0.74) practices: difference (95% confidence interval (CI)) 0.15 (0.04-0.27), t = 3.03, p = 0.0162; this difference remained significant when adjusted for previous year's proportions. In this proof-of-concept study, in inner city Coventry, we demonstrated increased attendance at diabetic retinopathy screening by use of a simple Link Worker-implemented telephone call intervention. The use of Link Worker phone calls may be a useful tool to increase attendance for diabetic retinopathy screening in a group with high did-not-attend (DNA) rates and a high prevalence of diabetic retinopathy and visual impairment.
The rising prevalence of diabetes in South Asians has significant health and economic implications. South Asians are predisposed to the development of diabetes due to biologic causes which are exacerbated by lifestyle and environmental factors. Furthermore, they experience significant morbidity and mortality from complications of diabetes, most notably coronary artery disease, cerebrovascular disease, and chronic kidney disease. Therefore, understanding the pathophysiology and genetics of diabetes risk factors and its associated complications in South Asians is paramount to curbing the diabetes epidemic. With this understanding, the appropriate screening, preventative and therapeutic strategies can be implemented and further developed. In this review, we discuss in detail the biologic and lifestyle factors that predispose South Asians to diabetes and review the epidemiology and pathophysiology of microvascular and macrovascular complications of diabetes in South Asians. We also review the ongoing and completed diabetes prevention and management studies in South Asians.
Disparities in the prevalence of mental illness are widely reported for people from ethnic minorities. Unlike the United States, there is no legislation for clinical research in the UK to mandate the inclusion of ethnic minorities and they are underrepresented in European trials compared with those conducted in the United States. This restricts generalization of research findings.
This systematic review of the barriers to the recruitment of ethnic minority participants into psychiatric research is based on a comprehensive literature search. Nine included papers explore such barriers based on the authors’ and participants’ experiences of research. These barriers are mainly categorized as: participant related, practical issues, family/community related, health service related and research process issues.
This review provides a compilation of important barriers to recruitment which can facilitate future research. The barriers that were identified are not all unique to participants from ethnic minorities, although the way in which they manifest themselves is often distinct in minority groups. It is important that these barriers are considered when designing research design so that solutions to overcome such obstacles can be incorporated in research protocols from the start and appropriate resources allocated. Copyright © 2014 John Wiley & Sons, Ltd .
Background: Depressive disorders are common in women of Pakistani origin living in the UK. In a pilot study we developed and tested a culturally sensitive social group intervention for persistently depressed Pakistani women.
Methods: A total of 55 persistently depressed women were identified in a population-based study. The first consecutive 18 who agreed to participate were enrolled into the study. Out of these, eight women dropped out before the start of the intervention, one woman attended the first session only and nine women attended 10 weekly sessions of the group. Outcome measures at baseline and at the end of the intervention were the 20 item Self Reporting Questionnaire (SRQ) and the Schedule for Clinical Assessment in Neuropsychiatry (SCAN).
Results: All 9 women attended at least six of the 10 sessions. Mean SRQ score at baseline was 15.0 (SD = 3.08) and 11.7 (SD = 5.95) at the end of the intervention (p = 0.039). Three women reported reduction in suicidal ideas.
Conclusions: A culturally appropriate social intervention successfully brought together a group of isolated chronically depressed Pakistani women, enabling them to form informal networks and forming the basis of an RCT to treat the depression.
Unlabelled:
Cognitive behavioural therapy (CBT) is recommended in treatment guidelines for psychotic symptoms (NICE, 2009) but clients from some minority groups have been shown to have higher dropout rates and poorer outcomes. A recent qualitative study in ethnic minority groups concluded that CBT would be acceptable and may be more effective if it was culturally adapted to meet their needs (Rathod et al., 2010).
Aim:
This study assessed the effectiveness of a culturally adapted CBT for psychosis (CaCBTp) in Black British, African Caribbean/Black African and South Asian Muslim participants.
Method:
A randomised controlled trial was conducted in two centres in the UK (n=35) in participants with a diagnosis of a disorder from the schizophrenia group. Assessments were conducted at three time points: baseline, post-therapy and at 6 months follow-up, using the Comprehensive Psychopathological Rating Scale (CPRS) and Insight Scale. Outcomes on specific subscales of CPRS were also evaluated. Participants in the treatment arm completed the Patient Experience Questionnaire (PEQ) to measure satisfaction with therapy. Assessors blind to randomisation and treatment allocation conducted administration of outcome measures. In total, n=33 participants were randomly allocated to CaCBTp arm (n=16) and treatment as usual (TAU) arm (n=17) after (n=2) participants were excluded. CaCBTp participants were offered 16 sessions of CaCBTp with trained therapists and the TAU arm continued with their standard treatment.
Results:
Analysis was based on the principles of intention to treat (ITT). This was further supplemented with secondary sensitivity analyses. Post-treatment, the intervention group showed statistically significant reductions in symptomatology on overall CPRS scores, CaCBTp Mean (SD)=16.23 (10.77), TAU=18.60 (14.84); p=0.047,with a difference in change of 11.31 (95% CI:0. 14 to 22.49); Schizophrenia change: CaCBTp=3.46 (3.37); TAU=4.78 (5.33) diff 4.62 (95% CI: 0.68 to 9.17); p=0.047 and positive symptoms (delusions; p=0.035, and hallucinations; p=0.056). At 6 months follow-up, MADRAS change=5.6 (95% CI: 2.92 to 7.60); p<0.001. Adjustment was made for age, gender and antipsychotic medication. Overall satisfaction was significantly correlated with the number of sessions attended (r=0.563; p=0.003).
Conclusion:
Participants in the CaCBTp group achieved statistically significant results post-treatment compared to those in the TAU group with some gains maintained at follow-up. High levels of satisfaction with the CaCBTp were reported.
We aimed at testing whether an assertive outreach team (AOT) run by a Black voluntary organisation is more acceptable to Black people with severe mental illness.
A randomised controlled trial (RCT) of 83 Black (African, African Caribbean or Black British) patients with severe mental illness with treatment as usual (TAU) or Assertive Outreach (AO) by a non-statutory sector Black AOT. Frequency of admissions, duration of admissions, symptom severity and client satisfaction with clinical interventions were assessed.
The mean length of admission at follow-up was not significantly different between the two groups (74.64 v. 64.51; mean difference= 10.13, 95% CI -2.86, 23.11, p= 0.125), neither was the mean number of admissions (1.32 v. 1.20; mean difference=0.13, 95% CI -0.18, 0.43, p = 0.401). Mean Brief Psychiatric Rating Scale (BPRS) ratings at 1-year follow-up were significantly lower in the AOT group than in the TAU group (56.34 v. 63.62; mean difference = 7.27, 95% CI 0.66, 13.88, p = 0.032), and people were significantly more satisfied with AOT 24/29 (83%) than the generic services: 4/26 (15%), p<0.001.
While the AO service was highly culturally acceptable to Black people, there was no evidence that the provision of AOT reduces frequency or duration of hospital admission.
To investigate why mortality from stroke in people of Afro-Caribbean origin is twice the average for England and Wales, we examined 1166 European and Afro-Caribbean people in London. Age-standardized median systolic blood pressure was 6 mm Hg higher (128 versus 122 mm Hg) in Afro-Caribbean than European men and 17 mm Hg higher (135 versus 118 mm Hg) in Afro-Caribbean than European women. Migrants from West Africa and the Caribbean had similar blood pressures. Body mass index was higher in Afro-Caribbean than European women, accounting for 4 mm Hg of the systolic difference. Diabetes prevalence was 16% in Afro-Caribbeans and 5% in Europeans (P < .001), accounting for 1 mm Hg of the difference in systolic pressure in men and 2 mm Hg in women. In participants not taking antihypertensive medication, mean fall in ambulatory systolic pressure between daytime and nighttime, adjusted for resting blood pressures, was 24 mm Hg in Europeans and 18 mm Hg in Afro-Caribbeans (P = .05), and percent day-night fall in systolic blood pressure adjusted for resting systolic pressure was 17% in Europeans and 12% in Afro-Caribbeans (P < .05). This difference persisted when men and women and normotensive and hypertensive individuals were examined separately. We estimate that the differences in blood pressure between Afro-Caribbeans and Europeans may be enough to account for ethnic differences in stroke mortality in women but not men. The reasons for the high prevalence of hypertension and related morbidity in this and other populations of African descent remain to be established.
Type 2 diabetes is a growing problem in people of South Asian origin. It is associated with severe complications if it is not adequately controlled. This paper is a secondary assessment of 105 British Pakistani women within a larger randomized controlled trial of 200 Pakistani patients with diabetes. The trial used one-to-one structured diabetes health education, delivered by a linkworker with pictorial flashcards as a visual aid. Earlier published results from this study have shown that the women in the study knew less about diabetes and had poorer glycaemic control than men, which is why this assessment was performed to see what happened to them when they received appropriate health education. All patients were assessed before and 6 months after intervention by questionnaire and haemoglobin A1c blood tests to measure their overall blood sugar control. Nearly everyone improved their knowledge scores after 6 months in the intervention group, with women showing a catch-up improvement such that they equalled men. Multiple regression analysis found that glycaemic control improved in women receiving health education. Although this method of health education improved knowledge and glycaemic control in women in this sample, illiterate women did not do as well as their literate peers, continuing to score less on knowledge parameters. They also did not show an improvement in glycaemic control. Further work is needed to discover methods that will reach this sizeable subsection of the community.
To determine the effect of patient education on patient perspectives and outcome of depression in a sample of Asian women in primary care.
A randomised, clinical trial of "patient education" versus "usual care".
A general practice in London, which has a high proportion of Asians.
Seventy patients with psychiatric morbidity (a score of 3 or more on the General Health Questionnaire 12) were recruited for the trial.
Patient's explanatory models of illness (the patient's perspective on depression; recognition of depression as illness and recommend a medical intervention for this condition) and psychiatric morbidity at follow-up after two months were the primary outcome measures.
One hundred and fifty-five women of Asian decent were contacted. One hundred and forty-eight (95.5%) agreed to take part in the study. Seventy (47.3%) were classed as cases of common mental disorder using the General Health Questionnaire 12. Thirty-five were randomly allocated to receive education about the nature, causes, prevalence and treatment of depression, 35 did not receive such information. There were no statistical differences between the two groups on baseline characteristics. Sixty-six (94.3%) subjects were followed up at two months. An intention to treat analysis showed that there was no difference in explanatory model measures between the two groups at the end of the study. However, more patients who received education were no longer cases (a score of 2 or less on the GHQ) (15/35; 42.9%) compared to controls (7/35; 20%) (p < 0.05) as did those with lower GHQ scores at entry (p < 0.03). Receipt of educational intervention (OR 3.4; 95% CI 1.01, 11.5) and lower GHQ scores at entry (OR 7.1; 95% CI 1.05, 30.2) remained significantly associated with recovery after adjusting for baseline variables using logistic regression.
Patients with common mental disorders, especially those with milder forms of the condition, who received the educational material had a higher recovery rate than patients who do not receive such education. The mechanism for this improvement was unclear, not being reflected in patient's apparent understanding of depression nor explained by change in general practitioner's response. The results of this study need to be replicated.
People of non-European origin form around 7% of the total UK population. Most of these are of South Asian (that is, from the Indian subcontinent) or Black African (that is, from the Caribbean and West Africa) descent. For these migrants, as for virtually all population groups living in the western world, cardiovascular disease (CVD) is the main cause of death. But there are striking ethnic differences in CVD risk. Disease presentation may differ, challenging diagnostic skills, and therapeutic requirements and responses may also not be uniform. The study of ethnic differences in CVD has provided valuable aetiological clues, not just for ethnic minority groups but also for the majority population.
To investigate whether a secondary-primary care partnership education package could improve understanding of diabetes care among South Asians.
In a pilot randomized controlled trial, in the setting of eight general practices randomized to intervention or control, patients were invited to four or more rotating visits per year by one of a diabetes specialist nurse, dietician or chiropodist working with general practice staff. Participants were from lists of South Asian patients with known Type 2 diabetes in each (general) practice.
Patients and practice scores at baseline and 1-year follow-up, from an interview using a questionnaire on knowledge, awareness and self-management of diabetes. Responses were developed into educational packages used during intervention. Of the 411 patients listed at baseline only 211 were traced for interview (refusal only 4%). Mean age was 55.4 years, age of diabetes onset 47.1 years. Fourteen percent were employed and 35% were able to communicate in English fluently. Only 118 could be traced and interviewed at 1 year, although there was no significant difference in demography between those who completed the study and those who did not. Despite a mean of four visits/patient, intervention had no impact on scores for diabetes knowledge, or awareness [score change 0.14, 95% confidence interval (CI) -0.20, 0.49] or self-management (-0.05, 95% CI -0.48, 0.39) between baseline and 1 year.
This form of secondary/primary care support did not transfer information effectively, and we suspect similar problems would arise in other similar communities. Different methods of clinician/patient information exchange need to be developed for diabetes in this South Asian group.
Randomised controlled trials (RCTs) are considered to be the gold standard in evaluating medical interventions; however, people from ethnic minorities are frequently under-represented in such studies. The present paper addresses a previously neglected debate about the tensions which inform clinical trial participation amongst people from ethnic minorities, in particular, South Asians, the largest ethnic minority group in the UK. In a narrative review of the available literature, based mainly on US studies, the present authors aim to make sense of the issues around under-representation by providing a theoretical reconciliation. In addition, they identify a number of potential barriers to ethnic minority participation in clinical trials. In so doing, the authors recognise that the recent history of eugenic racism, and more general views on clinical trials as a form of experimentation, means that clinical trial participation among people from ethnic minorities becomes more problematic. Lack of participation and the importance of representational sampling are also considered, and the authors argue that health professionals need to be better informed about the issues. The paper concludes by offering a number of strategies for improving ethnic minority accrual rates in clinical trials, together with priorities for future research.
The frequency of asthma varies between countries, and may also vary between ethnic groups in more geographically confined areas. We sought evidence of such ethnic variations in the UK for asthma frequency, morbidity, and health-services use, and to understand possible reasons for any differences.
We searched MEDLINE, EMBASE, CINAHL, PSYCHInfo, PREMEDLINE, HEALTHSTAR, Cambridge Register of Conference Abstracts, the Dissertation and Thesis Database, and the National Registry of Research. Additionally, we searched the bibliographies of reports identified and websites of health authorities, and contacted experts in this discipline. Our main outcomes were comparisons of asthma rate, morbidity, and health-services use. We did meta-analyses using random-effects models.
13 studies contained relevant data. All prevalence studies were of children and showed that south Asian children had a lower frequency of symptoms suggestive of asthma compared with black and white children (pooled rate of history of wheeze in the previous 12 months: south Asians 9.6% [95%CI 8.0-11.2%], black people 16.2% [12.8-19.6%], white people 14.6% [11.5-17.8%]). The pooled frequency of clinician-diagnosed asthma in children followed a similar pattern (south Asians 7.6% [3.7-11.4%], black people 15.0% [3.5-26.5%], white people 10.6% [4.6-16.7%]. However, relative to white people, the risk of admission for asthma in children and adults was higher for south Asians (odds ratio 2.9 [2.4-3.4]) and black people (2.1 [1.8-2.5]).
The differences in admission are not explained by differences in asthma frequency between groups; they could relate to ethnic variations in asthma severity, differences in health-seeking behaviour, or difficulties in accessing high-quality primary care services.
There is now compelling evidence that migrant groups in several countries have an elevated risk of developing schizophrenia and other psychotic disorders. Though the findings of earlier studies were greeted with skepticism, and ascribed by some to have methodological shortcomings and diagnostic biases, the more rigorous recent studies, from a variety of countries, have still found markedly increased incidence rates. While this phenomenon is an important health issue in its own right, understanding the reasons for the increased rates may provide valuable insights into the causes of schizophrenia and other psychotic disorders in general. The challenge for the next phase of studies is to identify the relevant risk factors and how they might interact to increase the risk of psychosis, both in migrant groups and in the general population.
Immigration, population and ethnicity: the UK in International Perspective, Migration Observatory briefing.
- Coleman D.
- McNeil R.
Ethnic Diversity and Inequality: Ethical and Scientific Rigour in Social Research.
- Salway S.
- Barley R.
- Allmark P.
- Gerrish K.
- Higginbottom G.
- Ellison G.
Understanding the excess of psychosis among the African-Caribbean population in England. Review of current hypotheses.
- Sharpley M.
- McKenze K.
- Murray R.M.
Report of the Advisory Committee on Research on Women's Health, Fiscal Years 2013–2014: Office of Research on Women's Health and NIH Support for Research on Women's Health.
- Office of Research on Women's Health
Developing and evaluating training programme to increase recruitment of ethnic minority participants to mental health research: SHAMIL
- Waheed
Understanding the excess of psychosis among the African-Caribbean population in England. Review of current hypotheses
- Sharpley
Ethnic variations in UK asthma frequency, morbidity, and health-service use: a systematic review and meta-analysis
- Netuveli
The impact of an inability to communicate in English on the inclusion of ethnic minorities within mental health research
- A Hurrell
- W Waheed