Mark Rd Johnson

Adapting health promotion interventions to meet the needs of ethnic minority groups: mixed-methods evidence synthesis

BACKGROUND There is now a considerable body of evidence revealing that a number of ethnic minority groups in the UK and other economically developed countries experience disproportionate levels of morbidity and mortality compared with the majority white European-origin population. Across these countries, health-promoting approaches are increasingly viewed as the long-term strategies most likely to prove clinically effective and cost-effective for preventing disease and improving health outcomes in those with established disease. OBJECTIVES To identify, appraise and interpret research on the approaches employed to maximise the cross-cultural appropriateness and effectiveness of health promotion interventions for smoking cessation, increasing physical activity and improving healthy eating for African-, Chinese- and South Asian-origin populations. DATA SOURCES Two national conferences; seven databases of UK guidelines and international systematic reviews of health promotion interventions aimed at the general population, including the Clinical Evidence, National Institute for Health and Clinical Excellence and Scottish Intercollegiate Guidelines Network databases (1950-2009); 11 databases of research on adapted health promotion interventions for ethnic minority populations, including BIOSIS, EMBASE and MEDLINE (1950-2009); and in-depth qualitative interviews with a purposive sample of researchers and health promoters. REVIEW METHODS Theoretically based, mixed-methods, phased programme of research that involved user engagement, systematic reviews and qualitative interviews, which were integrated through a realist synthesis. Following a launch conference, two reviewers independently identified and extracted data from guidelines and systematic reviews on the effectiveness of interventions for the general population and any guidance offered in relation to how to interpret this evidence for ethnic minority populations. Data were thematically analysed. Reviewers then independently identified and critically appraised studies of adapted interventions and summarised data to assess feasibility, acceptability, equity, clinical effectiveness and cost-effectiveness. Interviews were transcribed, coded and thematically analysed. The quantitative and qualitative data were then synthesised using a realist framework to understand better how adapted interventions work and to assess implementation considerations and prioritise future research. Our preliminary findings were refined through discussion and debate at an end-of-study national user engagement conference. RESULTS Initial user engagement emphasised the importance of extending this work beyond individual-centred behavioural interventions to also include examination of community- and ecological-level interventions; however, individual-centred behavioural approaches dominated the 15 relevant guidelines and 111 systematic reviews we identified. The most consistent evidence of effectiveness was for pharmacological interventions for smoking cessation. This body of work, however, provided scant evidence on the effectiveness of these interventions for ethnic minority groups. We identified 173 reports of adapted health promotion interventions, the majority of which focused on US-based African Americans. This body of evidence was used to develop a 46-item Typology of Adaptation and a Programme Theory of Adapted Health Promotion Interventions. Only nine empirical studies directly compared the effectiveness of culturally adapted interventions with standard health promotion interventions, these failing to yield any consistent evidence; no studies reported on cost-effectiveness. The 26 qualitative interviews highlighted the need to extend thinking on ethnicity from conventional dimensions to more contextual considerations. The realist synthesis enabled the production of a decision-making tool (RESET) to support future research. LIMITATIONS The lack of robust evidence of effectiveness for physical activity and healthy-eating interventions in the general population identified at the outset limited the comparative synthesis work we could undertake in the latter phases. Furthermore, the majority of studies undertaking an adapted intervention were conducted within African American populations; this raises important questions about the generalisability of findings to, for example, a UK context and other ethnic minority groups. Lastly, given our focus on three health areas and three populations, we have inevitably excluded many studies of adapted interventions for other health topics and other ethnic minority populations. CONCLUSIONS There is currently a lack of evidence on how best to deliver smoking cessation, physical activity and healthy eating-related health promotion interventions to ethnic minority populations. Although culturally adapting interventions can increase salience, acceptability and uptake, there is as yet insufficient evidence on the clinical effectiveness or cost-effectiveness of these adapted approaches. More head-to-head comparisons of adapted compared with standard interventions are warranted. The Typology of Adaptation, Programme Theory of Adapted Health Promotion Interventions and RESET tool should help researchers to develop more considered approaches to adapting interventions than has hitherto been the case. FUNDING The National Institute for Health Research Health Technology Assessment programme.

Development of alternative methods of data collection in South Asians with Type 2 diabetes.

Aims  Previous research in the UK has established the difficulty of recruiting and collecting information from individuals whose main language is spoken and does not have an agreed written form. The aims of this study were (i) to develop culturally competent translations of two questionnaires measuring diabetes self‐care in languages with no written form and to establish their face validity and (ii) to develop acceptable methods of delivery with the potential for providing valid and reliable data for use in research studies.

Cross cultural evaluation of the Warwick-Edinburgh mental well-being scale (WEMWBS) -a mixed methods study

BackgroundWe aimed to validate the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) among English speaking adults representing two of the minority ethnic groups living in the UK, self-identified as Chinese or Pakistani by background, in a mixed methods study.MethodsQuantitative data were collected in two cities in the West Midlands, UK. Item response, dimensionality, internal consistency, and construct validity of the WEMWBS were assessed in Chinese and Pakistani groups separately, using data from both cities combined.Qualitative data were collected in the first city in eight focus groups of different ages recruited by the community workers. Three mixed sex Chinese and five single sex Pakistani groups discussed ease of completion and comprehension of items, together with overall reactions to the scale and underlying concept.Results of quantitative and qualitative analysis were examined for commonalities and differences.ResultsItem completion and item total correlations were satisfactory in both groups. In the Chinese data, Exploratory Factor Analysis showed a single factor with loadings ranging from 0.60 to 0.82 for all 14 items. In the Pakistani data, three factors reached statistical significance; however, a substantial drop in eigenvalues between the first and second factors and the limited variance explained by the second and third factors supported a one-factor model. All items loaded on this factor from 0.51 to 0.83.In the Chinese and Pakistani data respectively, Cronbach’s alpha was 0.92 (0.89 – 0.94) and 0.91 (0.88 – 0.94); Spearman’s correlation with GHQ-12 was - 0.63 (−0.73 to −0.49) and −0.55 (−0.70 to −0.36), and with the WHO-5 0.62 (0.46-0.75) and 0.64 (0.50 to 0.76).Qualitative analysis revealed good comprehension and ease of completion of almost all items. Some culturally determined differences in understanding of mental well-being, which varied both between and within communities, emerged.ConclusionsThe WEMWBS was well received by members of both Pakistani and Chinese communities. It showed high levels of consistency and reliability compared with accepted criteria. Data were sufficiently strong to recommend the WEMWBS for use in general population surveys.

Behavior Change Interventions to Improve the Health of Racial and Ethnic Minority Populations: A Tool Kit of Adaptation Approaches

CONTEXT Adapting behavior change interventions to meet the needs of racial and ethnic minority populations has the potential to enhance their effectiveness in the target populations. But because there is little guidance on how best to undertake these adaptations, work in this field has proceeded without any firm foundations. In this article, we present our Tool Kit of Adaptation Approaches as a framework for policymakers, practitioners, and researchers interested in delivering behavior change interventions to ethnically diverse, underserved populations in the United Kingdom. METHODS We undertook a mixed-method program of research on interventions for smoking cessation, increasing physical activity, and promoting healthy eating that had been adapted to improve salience and acceptability for African-, Chinese-, and South Asian-origin minority populations. This program included a systematic review (reported using PRISMA criteria), qualitative interviews, and a realist synthesis of data. FINDINGS We compiled a richly informative data set of 161 publications and twenty-six interviews detailing the adaptation of behavior change interventions and the contexts in which they were undertaken. On the basis of these data, we developed our Tool Kit of Adaptation Approaches, which contains (1) a forty-six-item Typology of Adaptation Approaches; (2) a Pathway to Adaptation, which shows how to use the Typology to create a generic behavior change intervention; and (3) RESET, a decision tool that provides practical guidance on which adaptations to use in different contexts. CONCLUSIONS Our Tool Kit of Adaptation Approaches provides the first evidence-derived suite of materials to support the development, design, implementation, and reporting of health behavior change interventions for minority groups. The Tool Kit now needs prospective, empirical evaluation in a range of intervention and population settings.

“Public” perceptions of gamete donation: a research review

This paper reviews the literature on “public” perceptions of the practice of gamete (egg and sperm) donation in the treatment of infertility. Despite regular “consultation” exercises in the UK on the manner in which infertility treatments should be regulated, there is little sense of how a range of public groups respond to developments in this area. The key themes from thirty-three articles, chapters and reports are discussed. The review reveals the limited nature of our current knowledge of public understandings of and attitudes towards gamete donation as a form of infertility treatment which has been readily available and widely practiced for many years. The review is critical of the methodological and epistemological basis of much of the work in this area and argues that there is a strong case for social scientific research to attempt to capture the perceptions of a wider range of people who are rarely included in formal public consultations and often similarly excluded from research studies.

British South Asian communities and infertility services

This paper presents key findings from the first major study of the provision of infertility services to South Asian communities in the UK. The research aimed to explore the social meanings of infertility and to examine the experiences of couples receiving fertility treatment. Focus groups with people from Pakistani, Bangladeshi and Indian communities (n = 93) revealed a strongly pro-natalist ideology and a relatively limited knowledge of infertility and treatments. Interviews with 50 participants from the same communities revealed a general satisfaction with secondary level infertility services. However, a minority felt inadequately informed about their condition, tests undertaken and treatment options; only one-third were given any written information about treatment; many were concerned about delays and waiting times; a minority felt that staff could be more sympathetic in their response to ‘failed’ treatment and several couples suggested that additional emotional support would be helpful. No information or resources were available in any South Asian language and the arrangements for communication support for non-English speakers were generally less than adequate. There was little evidence of the use of data on ethnic or religious background in infertility clinics. Recommendations for policy and practice are proposed.

Drinking in second generation black and asian communities in the english midlands

Previous research has suggested low levels of drinking and high rates of abstinence amongst members of ethnic minority groups in Britain, but it was not clear that those conclusions applied equally to those born or educated in Britain. Using quota sampling and street interviewing methods, a sample of 1684 second or subsequent generation men and women from Black (African), African-Caribbean, and Black (British), Indian Hindu, Indian Sikh, Bengali, and Pakistani communities in two Midlands cities completed a brief structured interview during February and March 1999. Results differed markedly by ethnic group, and sometimes by sex. Most Black men and women and most Sikh men were drinkers, and rates of heavy drinking in those groups were comparable to those found in national general population samples. The drinking of substantial minorities in those groups gives cause for concern on account, for example, of regular heavy drinking and associated behaviour carrying social or health risks. Hindu, Pakistani and Bengali men and women, and Sikh women, on the other hand, reported high levels of abstinence, with much smaller proportions of the total (but similar proportions of drinkers) drinking heavily and giving cause for concern. Both mens and womens drinking (ethnic groups combined) was correlated with a lower self-rated identity with religion, and in addition womens drinking was correlated with a range of other social and cultural variables (more qualified, employed, single, smaller household, fewer friends from own ethnic group). Large proportions of South Asian men and women drinkers believed their parents did not know about their drinking, and preferred that parents should not know. GPs and health centres were widely recognised as sources of external advice for drinking problems. Community centres and leaders and places of worship were very little mentioned as sources of such help, and in nearly all groups there was a high level of reluctance to seek help outside the family or friendship network. It is concluded that, whilst many second and subsequent generation South Asian people in Britain remain protected from indigenous patterns of drinking by cultural and religious norms, that is no longer the case for Sikh men nor for Black men and women, nor for small minorities of other South Asian groups who drink.

Smoking cessation interventions for ethnic minority groups - A systematic review of adapted interventions

OBJECTIVE Existing smoking cessation interventions tend to be under utilized by ethnic minority groups. We sought to identify smoking cessation interventions that have been adapted to meet the needs of African-, Chinese- and South Asian-origin populations, to increase understanding of the approaches used to promote behavior change, to assess their acceptability to the target populations, and to evaluate their effectiveness. METHODS Two reviewers independently searched for, identified, critically appraised and extracted data from studies identified from 11 databases (January 1950-April 2013). Study quality was assessed using validated instruments (EPHPP and STROBE). Adaptations were independently coded using an established typology, and findings descriptively summarized and thematically synthesized. RESULTS 23 studies described interventions adapted for African-Americans, and five for Chinese-origin populations. No intervention adapted for South-Asian populations was identified. Six studies directly compared a culturally adapted versus a non-adapted intervention. Adapted interventions were more acceptable to ethnic minority groups, but this did not translate into improvements in smoking cessation outcomes. CONCLUSIONS Given the evidence of greater acceptability of adapted interventions, it may be ethically preferable to use these. There is, however, no clear evidence of the effectiveness of adapted interventions in promoting smoking cessation in ethnic minority groups.

Consideration of ethnicity in guidelines and systematic reviews promoting lifestyle interventions: a thematic analysis

BACKGROUND There is a growing body of evidence supporting lifestyle interventions for the prevention of chronic disease. However, it is unclear to what extent these evidence-derived recommendations are applicable to ethnic minority populations. We sought to assess the degree of consideration of ethnicity in systematic reviews and guidelines for lifestyle interventions. METHODS Two reviewers systematically searched seven databases to identify systematic reviews (n = 111) and UK evidence-based guidelines (n = 15) on smoking cessation, increasing physical activity and promoting healthy diet, which were then scrutinized for ethnicity-related considerations. Evidence statements were independently extracted and thematically analysed. RESULTS Forty-one of 111 (37%) systematic reviews and 12 of 15 (80%) guidelines provided an evidence statement relating to ethnicity; however, these were often cursory and focused mainly on the need for better evidence. Five major themes emerged: (i) acknowledging the importance of diversity and how risk factors vary by ethnicity; (ii) noting evidence gaps in the effectiveness and cost-effectiveness of interventions for ethnic minorities; (iii) observing differential effects of interventions where these have been trialled with ethnic minority populations; (iv) suggesting adaptation of interventions for ethnic minority groups; (v) proposing improvements in research on interventions involving ethnic minority populations. CONCLUSIONS Despite increasing recognition of the challenges posed by ethnic health inequalities, there remains a lack of guidance on the extent to which generic recommendations are applicable to, and how best to promote lifestyle changes in, ethnic minority populations. These important evidence gaps need to be bridged and tools developed to ensure that equity and population context is appropriately considered within evidence syntheses.

A systematic review of explanatory factors of barriers and facilitators to improving asthma management in South Asian children

BackgroundSouth Asian children with asthma are less likely to receive prescriptions and more likely to suffer uncontrolled symptoms and acute asthma admissions compared with White British children. Understanding barriers are therefore vital in addressing health inequalities. We undertook a systematic review identifying explanatory factors for barriers and facilitators to asthma management in South Asian children. South Asians were defined as individuals of Indian, Pakistani or Bangladeshi descent.MethodsData Sources - Medline, HMIC, EMBASE, ASSIA, Web of Science, BNI, CINAHL, PsycINFO, OpenSIGLE, CRD, Scopus, NHS Evidence, Cochrane Library, Campbell Collaboration, RCPCH, ATS, ERS, Asthma UK, Google Scholar & Asthma Guidelines (BTS, GINA, ATS, Monash, NAEPP, Singapore & New Zealand) to August 2013.Inclusion Criteria – Qualitative, quantitative or mixed methods research with primary focus on identifying explanations for barriers and/or facilitators to asthma management in South Asian children aged 0–18 years with diagnosed/suspected asthma and/or carers and/or healthcare professionals.Data Extraction – Three authors independently reviewed, selected & extracted eligible articles with disagreements resolved by research team discussion.Results15 studies encompassing 25,755 children, 18,483 parents/carers and 239 healthcare professionals were included. Barriers and explanatory factors identified were:1. Lack of asthma knowledge in families and healthcare professionals.2. Under-use of preventer medications.3. Non-acceptance/denial of asthma.4. Over-reliance on Emergency Department management.5. Communication problems.6. Non-adherence to medication.7. Use of complementary therapies.Little facilitators regarding asthma management were identified.ConclusionsSeveral key issues were identified as likely to be ethnic-specific to South Asian families, rather than a reflection of minority status: impact of parental and professional knowledge and beliefs, health service utilisation pattern explanations and the impact of prejudice and stigmatisation. Other explanations such as language barriers are not strictly ethnic specific but instead reflect a minority position.Further research is required to identify why barriers exist, the mechanisms by which they impact on asthma management and how they can be overcome. Furthermore, understanding the difference between barriers and explanations that are ethnic-specific and those that are related to being a minority will enable the application of generic system-wide interventions where ethnicity is not the issue and ethnically-tailored interventions where needed.