Key considerations when involving children in health intervention design: reflections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study.

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child's needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the 'evidence base', making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children's perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach.

Involving families in health research gives children the opportunity to have more control over their healthcare and can help researchers/clinicians to better understand a child's needs. However, involving children in research is still an uncommon practice despite international pressures to include children in decision making. This paper reflects on the development of the Management and Intervention for Asthma study, which worked with communities to develop a framework for planning health interventions for South Asian children with asthma. There are currently 1 million children in the UK being treated for asthma, making it one of the most common chronic childhood illnesses. Symptoms of asthma are overlooked in children from South Asian communities in the UK, leading to worse health outcomes and more visits to the emergency department. We worked with the community to identify the key concerns and priorities they had, and then jointly designed the framework around their needs. We identified several key things to consider when co-developing interventions with children: Power dynamics Consent/Assent Parental involvement Time and location Engagement Diversity of needs Ethnicity and Culture Adapting our research and engagement methods to suit children's needs enabled us to involve them in the study in a way that allowed us to effectively explore their views, priorities, and experiences of their illness. However, researchers need to make sure that they have the expertise, time, and resources to be able to support the needs of child participants.

Interventions to improve therapeutic communications between Black and minority ethnic patients and professionals in psychiatric services: systematic review.

BACKGROUND: Communication may be an influential determinant of inequality of access to, engagement with and benefit from psychiatric services. AIMS: To 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. RESULTS: Twenty-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.

Interventions designed to improve therapeutic communications between black and minority ethnic people and professionals working in psychiatric services: a systematic review of the evidence for their effectiveness.

BACKGROUND: Black and minority ethnic (BME) people using psychiatric services are at greater risk of non-engagement, dropout from care and not receiving evidence-based interventions than white British people. OBJECTIVES: To identify effective interventions designed to improve therapeutic communications (TCs) for BME patients using psychiatric services in the UK, to identify gaps in the research literature and to recommend future research. PARTICIPANTS: Black African, black Caribbean, black British, white British, Pakistani and Bangladeshi patients in psychiatric services in the UK, or recruited from the community to enter psychiatric care. Some studies from the USA included Hispanic, Latino, Chinese, Vietnamese, Cambodian and African American people. INTERVENTIONS: Any that improve TCs between BME patients and staff in psychiatric services. DATA SOURCES: The published literature, 'grey' literature, an expert survey, and patients' and carers' perspectives on the evidence base. Databases were searched from their inception to 4 February 2013. Databases included MEDLINE, Applied Social Sciences Index and Abstracts, The Cochrane Library, Social Science Citation Index, Allied and Complementary Medicine Database, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, EMBASE, The Campbell Collaboration and ProQuest for dissertations. REVIEW METHODS: Studies were included if they reported evaluation data about interventions designed to improve therapeutic outcomes by improving communication between BME patients and psychiatric professionals. Qualitative studies and reports in the grey literature were included only if they gave a critical evaluative statement. Two members of the team selected studies against pre-established criteria and any differences were resolved by consensus or by a third reviewer, if necessary. Data were extracted independently by two people and summarised in tables by specific study designs. Studies were subjected to a narrative synthesis that included a thematic analysis contrasting populations, countries and the strength of evidence for any intervention. The components of the interventions were compared. Patient perspectives on acceptability were considered alongside quality scores and methodological strengths and weaknesses. RESULTS: Twenty-one studies (19 from the published literature and two from the grey literature) met the inclusion criteria. There were 12 trials, two observational quantitative studies, three case series, a qualitative study and three descriptive case studies. Only two studies, one a pilot trial and one a case series, included economic data; in both, a favourable but weak economic case could be made for the intervention. The trials tested interventions to prepare patients for therapeutic interventions, variable levels of ethnic matching (of professional to patient), cultural adaptation of therapies, and interventions that included social community systems in order to facilitate access to services. Empowering interventions favoured by patients and carers included adapted cognitive-behavioural therapy, assessments of explanatory models, cultural consultation, ethnographic and motivational interviews, and a telepsychiatry intervention. LIMITATIONS: Studies tended to have small sample sizes or to be pilot studies, and to use proxy rather than direct measures for TCs. CONCLUSIONS: Empowering interventions should be further researched and brought to the attention of commissioners. Several promising interventions need further evaluative research and economic evaluations are needed. STUDY REGISTRATION: The study is registered as PROSPERO CRD42011001661. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

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.

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.

Cluster randomised controlled trial of an educational outreach visit to improve influenza and pneumococcal immunisation rates in primary care.

BACKGROUND: Improvement in the delivery of influenza and pneumococcal vaccinations to high-risk groups is an important aspect of preventive care for primary healthcare teams. AIM: To investigate the effect of an educational outreach visit to primary healthcare teams on influenza and pneumococcal vaccination uptake in high-risk patients. DESIGN: Cluster randomised controlled trial. SETTING: Thirty general practices in the Trent region, UK. METHODS: Fifteen practices were randomised to intervention and 15 to the control group after stratifying for baseline vaccination rate. All intervention practices were offered and received an educational outreach visit to primary healthcare teams, in addition to audit and feedback directed at improving influenza and pneumococcal vaccination rates in high-risk groups. Control practices received audit and feedback alone. All practices measured influenza and pneumococcal vaccination rates in high-risk groups. Primary outcomes were improvements in vaccination rates in patients aged 65 years and over, and patients with coronary heart disease (CHD), diabetes and a history of splenectomy. RESULTS: Improvements in pneumococcal vaccination rates in the intervention practices were significantly greater compared with controls in patients with CHD, 14.8% versus 6.5% (odds ratio [OR] = 1.23, 95% confidence interval [CI] = 1.13 to 1.34) and diabetes, 15.5% versus 6.8% (OR = 1.18, 95% CI = 1.08 to 1.29) but not splenectomy, 6.5% versus 4.7% (OR = 0.96, 95% CI = 0.65 to 1.42). Improvements for influenza vaccination were also usually greater in intervention practices but did not reach statistical significance. The increases for influenza vaccination in intervention versus control practices were for CHD, 18.1% versus 13.1% (OR = 1.06, 95% CI = 0.99 to 1.12); diabetes, 15.5% versus 12.0% (OR = 1.07, 95% CI = 0.99 to 1.16), splenectomy 16.1% versus 2.9% (OR = 1.22, 95% CI = 0.78 to 1.93); and those over 65 years 20.7% versus 25.4% (OR = 0.99, 95% CI = 0.96 to 1.02). CONCLUSION: Practices where primary care teams received an educational outreach visit demonstrated a significantly greater improvement in uptake in high-risk groups for pneumococcal but not influenza vaccine.