Paediatric emergency department utilisation rates and maternal migration status in the Born in Bradford cohort: A cross-sectional study.

BACKGROUND: Globally, international migration is increasing. Population growth, along with other demographic changes, may be expected to put new pressures on healthcare systems. Some studies across Europe suggest that emergency departments (EDs) are used more, and differently, by migrants compared to non-migrant populations, which may be a result of unfamiliarity with the healthcare systems and difficulties accessing primary healthcare. However, little evidence exists to understand how migrant parents, who are typically young and of childbearing age, utilise EDs for their children. This study aimed to examine the association between paediatric ED utilisation in the first 5 years of life and maternal migration status in the Born in Bradford (BiB) cohort study. METHODS AND FINDINGS: We analysed linked data from the BiB study-an ongoing, multi-ethnic prospective birth cohort study in Bradford. Bradford is a large, ethnically diverse city in the north of England. In 2017, more than a third of births in Bradford were to mothers who were born outside the UK. Between March 2007 and December 2010, pregnant women were recruited to BiB during routine antenatal care, and the children born to these mothers have been, and continue to be, followed over time to assess how social, genetic, environmental, and behavioural factors impact on health from childhood to adulthood. Data analysed in this study included baseline questionnaire data from BiB mothers, and Bradford Royal Infirmary ED episode data for their children. Main outcomes were likelihood of paediatric ED use (no visits versus at least 1 ED visit in the first 5 years of life) and ED utilisation rates (number and frequency of ED visits) for children who have accessed the ED. The main explanatory variable was mother's migrant status (foreign-born versus UK/Irish-born). Multivariable analyses (logistic and zero-truncated negative binomial regression) were conducted adjusting for socio-demographic and socio-economic factors. The final dataset included 10,168 children born between April 2007 and June 2011, of whom 35.6% were born to migrant mothers. Foreign-born mothers originated from South Asia (28.6%), Europe/Central Asia (3.2%), Africa (2.1%), East Asia/Pacific (1.1%), and the Middle East (0.6%). At recruitment the mothers ranged in age from 15 to 49 years old. Overall, 3,104 (30.5%) children had at least 1 ED visit in the first 5 years of life, with the highest proportion of visits being in the first year of life (36.7%). The proportion of children who visited the ED at least once was lower for children of migrant mothers as compared to children of non-migrant mothers (29.4% versus 31.2%). Children of migrant mothers were found to be less likely to visit the ED (odds ratio 0.88 [95% CI 0.80 to 0.97], p = 0.012). However, among children who visited the ED, the utilisation rate was significantly higher for children of migrant mothers (incidence rate ratio [IRR] 1.19 [95% CI 1.01 to 1.40], p = 0.040). Utilisation rates were higher for children born to mothers from Europe (IRR 1.71 [95% CI 1.07 to 2.71], p = 0.024) and established migrants (≥5 years living in UK) (IRR 1.24 [95% CI 1.02 to 1.51], p = 0.032) compared to UK/Irish-born mothers. Important limitations include being unable to measure children's underlying health status and the urgency of ED attendance, as well as the analysis being limited by missing data. CONCLUSIONS: In this study we observed that there is no higher likelihood of first paediatric ED attendance in the first 5 years of life for children in the BiB cohort for migrant mothers. However, among ED users, children of migrant mothers attend the service more frequently than children of UK/Irish-born mothers. Our findings show that patterns of ED utilisation differ by mother's region of origin and time since arrival in the UK.

Modern slavery in the UK: how should the health sector be responding?

Modern slavery is crime of extreme exploitation. It includes the use of coercion, force, deception and abuse of vulnerability for such purposes as trafficking, labour, sexual exploitation, forced criminal activity and domestic servitude. It is a topic of growing interest in the UK and beyond as it has emerged as an issue of considerable scale and consequence. To date, debates have been dominated by a law enforcement perspective. Less apparent has been an articulation of the implications of modern slavery for the health sector. This is despite growing evidence of the dire physical and mental health consequences for survivors. This paper addresses this gap by examining a series of issues relevant to UK health systems. After describing what is modern slavery and the nature of the problem, we identify how the health sector has responded to date. We then articulate how health services and public health can more coherently and systematically meet the challenges of modern slavery through policy and practice. Finally, we present a call for the health sector to position itself as a central to the wellbeing of survivors and as a fundamental ally in modern slavery prevention.

Developing a theory-driven framework for a football intervention for men with severe, moderate or enduring mental health problems: a participatory realist synthesis.

Background: Physical activity interventions are an important adjunct therapy for people with severe to moderate and/or enduring mental health problems. Football is particularly popular for men in this group. Several interventions have emerged over the past decade and there is a need to clearly articulate how they are intended to work, for whom and in what circumstances.Aims: To develop a theory-driven framework for a football intervention for men with severe, moderate and/or enduring mental health problems using a participatory realist approach.Methods: A participatory literature review on playing football as a means of promoting mental health recovery with a realist synthesis. It included the accounts and input of 12 mental health service users and the contributions of other stakeholders including football coaches and occupational therapists.Results: Fourteen papers were included in the review. Analysis revealed that interventional mechanisms were social connectedness, identity security, normalising experiences and positive affectivity. These supported mental health recovery. Outcomes were moderated by social stigma and several interventional factors such as over-competitiveness.Conclusions: The context mechanism outcome configuration framework for these interventions map well onto social models of mental health recovery and provide insight into how they work. This now requires testing.

Sitting less at work: a qualitative study of barriers and enablers in organisations of different size and sector.

BACKGROUND: Prolonged sitting is associated with a range of chronic health conditions and working in office-based jobs is an important contributor to total daily sitting time. Consequently, interventions to reduce workplace sitting have been developed and tested; however, no single intervention strategy consistently produces reductions in workplace sitting time. Exploring barriers and enablers to sitting less at work has been shown to support the development of more effective interventions. In order to address these barriers and enablers during the development and implementation of sit less at work interventions, it is important to understand how they may differ in different types of organisation, an area which has not yet been explored. The main aim of this study was to determine whether barriers and enablers to sitting less at work varied between organisations of different size and sector. METHODS: A qualitative study design was used. Four organisations of different sizes and sectors participated: a small business, a charity, a local authority and a large corporation. A total of ten focus groups comprising 40 volunteer employees were conducted. Focus groups were audio-recorded and transcribed verbatim. Transcripts were then thematically analysed using pre-defined themes, but analysis also allowed for emergence of additional themes. RESULTS: Barriers and enablers which were consistently raised by participants across all four organisations primarily included: individual-level factors such as habits and routines, and personal motivations and preferences; and factors relating to the internal physical environment. Barriers and enablers that differed by organisation mainly related to: organisational-level factors such as organisational culture, organisation size, and ways of working; and factors relating to the broader social, economic and political context such as the idea of presenteeism, and the impact of wider economic and political issues. CONCLUSIONS: This study found that although some themes were consistently raised by participants from organisations of different size and sector, participants from these organisations also experienced some different barriers and enablers to sitting less at work. For future research or practice, the study findings highlight that organisation-specific barriers and enablers need to be identified and addressed during the development and implementation of sit less at work interventions.

The development, implementation and evaluation of interventions to reduce workplace sitting: a qualitative systematic review and evidence-based operational framework.

BACKGROUND: Prolonged sitting is associated with increased risks of cardiovascular disease, Type 2 diabetes, some cancers, musculoskeletal disorders and premature mortality. Workplaces contribute to a large proportion of daily sitting time, particularly among office-based workers. Interventions to reduce workplace sitting therefore represent important public health initiatives. Previous systematic reviews suggest such interventions can be effective but have reported wide variations. Further, there is uncertainty as to whether effectiveness in controlled trials can be replicated when implemented outside the research setting. The aims of this review are to identify factors important for the implementation of workplace sitting interventions and to translate these findings into a useful operational framework to support the future implementation of such interventions. METHODS: A qualitative systematic review was conducted. Four health and social science databases were searched for studies set in the workplace, with office-based employees and with the primary aim of reducing workplace sitting. Extracted data were primarily from author descriptions of interventions and their implementation. Inductive thematic analysis and synthesis was undertaken. RESULTS: Forty studies met the inclusion criteria. Nine descriptive themes were identified from which emerged three higher-order analytical themes, which related to the development, implementation and evaluation of workplace sitting interventions. Key findings included: the importance of grounding interventions in theory; utilising participative approaches during intervention development and implementation; and conducting comprehensive process and outcome evaluations. There was a general under-reporting of information relating to the context within which workplace sitting interventions were implemented, such as details of local organisation processes and structures, as well as the wider political and economic landscape, which if present would aid the translation of knowledge into "real-world" settings. CONCLUSIONS: These findings provided the basis for an operational framework, which is a representation of all nine descriptive themes and three higher-order analytical themes, to support workplace sitting intervention development, implementation and evaluation. Once tested and refined, this framework has the potential to be incorporated into a practical toolkit, which could be used by a range of organisations to develop, implement and evaluate their own interventions to reduce workplace sitting time amongst staff.

International migrants' use of emergency departments in Europe compared with non-migrants' use: a systematic review.

Background: International migration across Europe is increasing. High rates of net migration may be expected to increase pressure on healthcare services, including emergency services. However, the extent to which immigration creates additional pressure on emergency departments (EDs) is widely debated. This review synthesizes the evidence relating to international migrants' use of EDs in European Economic Area (EEA) countries as compared with that of non-migrants. Methods: MEDLINE, EMBASE, CINAHL, The Cochrane Library and The Web of Science were searched for the years 2000-16. Studies reporting on ED service utilization by international immigrants, as compared with non-migrants, were eligible for inclusion. Included studies were restricted to those conducted in EEA countries and English language publications only. Results: Twenty-two articles (from six host countries) were included. Thirteen of 18 articles reported higher volume of ED service use by immigrants, or some immigrant sub-groups. Migrants were seen to be significantly more likely to present to the ED during unsocial hours and more likely than non-migrants to use the ED for low-acuity presentations. Differences in presenting conditions were seen in 4/7 articles; notably a higher rate of obstetric and gynaecology presentations among migrant women. Conclusions: The principal finding of this review is that migrants utilize the ED more, and differently, to the native populations in EEA countries. The higher use of the ED for low-acuity presentations and the use of the ED during unsocial hours suggest that barriers to primary healthcare may be driving the higher use of these emergency services although further research is needed.

Evaluating participant experiences of Community Panels to scrutinise policy modelling for health inequalities: the SIPHER Consortium.

Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and deliver involvement for these types of research which are highly technical, and where researchers are at a distance from the people whose lives data depicts. This article describes our experiences involving members of the public in the SIPHER Consortium, a data-intensive policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. We focus on evaluating people's experiences as part of Community Panels for SIPHER. Key issues familiar from general public involvement efforts include practical details, careful facilitation of meetings, and payment for participants. We also describe some of the more particular learning around how to communicate technical research to non-academic audiences, in order to enable public scrutiny of research decisions. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and properly resourced.

Actively involving members of the public is less common in 'data-intensive health research' (health research which does not create new data but focuses on analysing big existing datasets of statistics) than in conventional health research. 'Computational policy modelling' is an example of data-intensive health research where public involvement is not yet standard practice. This article describes our experiences involving members of the public in the SIPHER Consortium, a policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. This paper focuses on evaluating people's experiences as part of Community Panels for SIPHER. We brought together people with lived experience of health inequalities into three Community Panels, and we met for half a day 3-4 times a year to discuss and give feedback on the research. At first, it was difficult for Panel members to understand the research. Researchers had to try harder to avoid jargon, explain their work in plain English, and focus on the impact of the research in the 'real world'. Both the researchers and the Panel members learned how to communicate better over repeated meetings. Over time, we managed to have meaningful discussion of the choices researchers were making, so Panels could see their impact on the research. It was important that details of the meetings ­ planning meetings carefully so everyone feels welcome and valued, providing support with digital technology, financially rewarding people for their time ­ were taken seriously. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and takes time and money to get right.

Self-Compassion during COVID-19 in Non-WEIRD Countries: A Narrative Review.

The coronavirus disease 2019 (COVID-19) pandemic impacted people's mental health negatively worldwide, including in non-WEIRD (Western, Educated, Industrialised, Rich and Democratic) countries. Self-compassion, kindness and understanding towards oneself in difficult times have received increasing attention in the field of mental health. Self-compassion is strongly associated with good mental health in various populations. This narrative review aimed to synthesise the evidence on self-compassion and mental health in non-WEIRD countries during the COVID-19 pandemic. MEDLINE and PsycINFO were searched for empirical studies. Self-compassion was consistently associated with positive mental health in non-WEIRD countries too. However, how, and to what degree, each component of self-compassion impacts mental health remains to be evaluated across different cultures. Future research such as multi-national intervention studies, or component network meta-analysis, is needed to advance our understanding of how self-compassion improves mental health in different populations.

Framing the wider determinants of health: Reflections and learning from a knowledge mobilisation exercise with an English local authority.

Background: Health inequalities remain a persistent problem in the UK. One contributing factor may be how health inequalities are framed in professional and public debate. Dominant understandings of health focus on the individual, personal choice, lifestyle and (un)healthy behaviour. This project sought to reframe health inequalities as a 'systemic' or structural problem using extant guidance. This was intended to support the work of a local authority in England working to address health inequalities. Project design: An academic-practitioner participatory knowledge mobilisation exercise with a local authority public health team using recent guidance and reflective feedback and the iterative development of actionable tools. There were four discrete stages to the exercise. Methods: Two on-line and one face-to-face participatory, deliberative workshops designed to co-create reframed public health challenges and solutions based on team portfolios. Iterative feedback provided by the researcher to support the development of actionable tools. Results: Six topic areas were developed with a systemic framing: 1. Food insecurity, 2. Obesity, 3. Prostate cancer among Black men, 4. Cost of living, 5. Mental health, suicide prevention and Gypsy, Roma, Traveller communities, 6. Healthy streets. Reflections from the process revealed some perceived advantages of engaging in a systemic framing of the wider determinants of health, some limitations and issues to consider in a local setting. Benefits included: Clarity in a complex field; structured thinking about what to communicate and how; eliminated jargon; could be made locally relevant. Challenges included: Sustaining a consistent framing; maintaining the technique; knowing if was making a difference; slipping back into dominant (individualised) framings, especially in free-flowing discussion. Conclusions: The process of reframing the wider determinants of health using recent guidance in a local authority setting was broadly helpful in developing coherence and consistency across the public health team. There were challenges to adopting the approach and evaluation of its impact locally would be beneficial.

Governance of Intersectoral Collaborations for Population Health and to Reduce Health Inequalities in High-Income Countries: A Complexity-Informed Systematic Review.

BACKGROUND: A 'Health in All Policies' (HiAP) approach has been widely advocated as a way to involve multiple government sectors in addressing health inequalities, but implementation attempts have not always produced the expected results. Explaining how HiAP-style collaborations have been governed may offer insights into how to improve population health and reduce health inequalities. METHODS: Theoretically focused systematic review. Synthesis of evidence from evaluative studies into a causal logic model. RESULTS: Thirty-one publications based on 40 case studies from nine high-income countries were included. Intersectoral collaborations for population health and equity were multi-component and multi-dimensional with collaborative activity spanning policy, strategy, service design and service delivery. Governance of intersectoral collaboration included structural and relational components. Both internal and external legitimacy and credibility delivered collaborative power, which in turn enabled intersectoral collaboration. Internal legitimacy was driven by multiple structural elements and processes. Many of these were instrumental in developing (often-fragile) relational trust. Internal credibility was supported by multi-level collaborations that were adequately resourced and shared power. External legitimacy and credibility was created through meaningful community engagement, leadership that championed collaborations and the identification of 'win-win' strategies. External factors such as economic shocks and short political cycles reduced collaborative power. CONCLUSION: This novel review, using systems thinking and causal loop representations, offers insights into how collaborations can generate internal and external legitimacy and credibility. This offers promise for future collaborative activity for population health and equity; it presents a clearer picture of what structural and relational components and dynamics collaborative partners can focus on when planning and implementing HiAP initiatives. The limits of the literature base, however, does not make it possible to identify if or how this might deliver improved population health or health equity.

The unequal impact of Covid-19 on the lives and rights of the children of modern slavery survivors, children in exploitation and children at risk of entering exploitation.

This article discusses the unequal impact of Covid-19 on the lives of the children of survivors of modern slavery, child victims of exploitation and children at risk of exploitation in the UK. It draws on research that has analysed the risks and impacts of Covid-19 on victims and survivors of modern slavery. It explores how pandemic responses may have hindered these children's rights to education, food, safety, development and participation and representation in legal processes. It suggests that the pandemic should be used as an impetus to address inequalities that existed pre-Covid-19 and those that have been exacerbated by it.

Understanding the Implementation of "Sit Less at Work" Interventions in Three Organisations: A Mixed Methods Process Evaluation.

Long periods of workplace sitting are associated with poor health outcomes. Interventions to reduce workplace sitting time have had variable impacts, the reasons for which require further investigation. In this paper, we report on a process evaluation aiming to determine the intervention fidelity of three "sit less at work" interventions and to explore barriers and enablers to implementation, using a mixed methods "before and after" intervention study design. Convenience samples of staff were recruited from three diverse organisations to participate in pre- and post-intervention online questionnaires, objective measures of sitting time (using activPAL3™ devices) and post-intervention focus groups. Intervention implementers and key personnel were also recruited to participate in post-intervention focus groups and interviews. The process evaluation found that none of the interventions were implemented as intended, with no consistent reductions in sitting time. Contextual and organisational cultural barriers included workload pressures and the social norms of sitting, competing priorities, lack of management buy-in, and perceptions of where the responsibility for behaviour change should come from. To ensure effective implementation of future initiatives, deeper organisational-level change, requiring buy-in from all levels of management and staff, may be needed to shift organisational culture and associated social norms.

Using Co-Production to Develop "Sit Less at Work" Interventions in a Range of Organisations.

Prolonged periods of sitting are associated with negative health outcomes, so the increase in sedentary jobs is a public health concern. Evaluation of interventions to reduce workplace sitting have suggested that participatory approaches may be more effective. This paper describes the use of co-production in four diverse organisations. Workshops with staff in each organisation were conducted to develop an organisation-specific strategy. The first workshop involved creative activities to encourage participants to develop innovative suggestions. The second workshop then developed a feasible and acceptable action plan. An ecological approach was used to consider behaviour change determinants at a range of different levels including intrapersonal, interpersonal, organisational, and environmental-level factors. 41 staff volunteered for workshops (seven in a small business, 16 in a charity, 15 in a local authority, and three in a large corporation). Of those, 27 were able to attend the first workshops and 16 were able to attend the second. Whilst there were some similarities across organisations, the smaller organisations developed a more tailored and innovative strategy than large organisations where there were more barriers to change and a more diverse workforce. Co-production resulted in bespoke interventions, tailored for different organisational contexts, maximising their potential feasibility and acceptability.

Enhancing health literacy through co-design: development of culturally appropriate materials on genetic risk and customary consanguineous marriage.

AimTo develop a simple health literacy intervention aimed at supporting informed reproductive choice among members of UK communities practising customary consanguineous marriage. BACKGROUND: The contribution of 'health literacy' to reducing health inequalities and improving primary health-care efficiency is increasingly recognised. Enhancing genetic literacy has received particular attention recently. Consanguineous marriage is customarily practised among some UK minority ethnic communities and carries some increased risk of recessive genetic disorders among offspring compared with unions among unrelated partners. The need to enhance genetic literacy on this issue has been highlighted, but no national response has ensued. Instead, a range of undocumented local responses are emerging. Important knowledge gaps remain regarding how the development and implementation of culturally appropriate, effective and sustainable responses can be achieved. METHODS: Our co-design approach involved active participation by local people. Initial insight generation employed six focus group discussions and 14 individual interviews to describe current understandings and information needs. A total of 11 personas (heuristic narrative portraits of community 'segments') resulted; four participatory workshops provided further understanding of: preferred information channels; feasible information conveyance; and responses to existing materials. Prototype information resources were then developed and feedback gathered via two workshops. Following further refinement, final feedback from health-care professionals and community members ensured accuracy and appropriateness.FindingsThe project demonstrated the utility of co-design for addressing an issue often considered complex and sensitive. With careful planning and orchestration, active participation by diverse community members was achieved. Key learning included: the importance of establishing trusting and respectful relationships; responding to diversity within the community; and engendering a creative and enjoyable experience. The resultant materials were heavily shaped by local involvement. Evaluative work is now needed to assess impacts on knowledge and service uptake. Longer term sustainability will depend on whether innovative community-level work is accompanied by broader strategy including investment in services and professional development.

Roma populations and health inequalities: a new perspective.

PURPOSE: The purpose of this paper is to explore the emergence of "Roma health and wellbeing" as a focus of attention in European research and in policy and the possible detrimental consequences of action founded on a generic representation of "Roma health." DESIGN/METHODOLOGY/APPROACH: Based on discussions with and research conducted by scholars who work directly with Roma communities across European regions from a wide range of academic disciplines it suggests how future research might inform: a more nuanced understanding of the causes of poor health and wellbeing among diverse Roma populations and; actions that may have greater potential to improve the health and wellbeing among these populations. FINDINGS: In summary, the authors promote three types of research: first critical analyses that unpick the implications of current and past representations of "Roma" and "Roma health." Second, applied participatory research that meaningfully involves people from specific self-defined Roma populations to identify important issues for their health and wellbeing. Third, learning about processes that might impact on the health and wellbeing of Roma populations from research with other populations in similarly excluded situations. ORIGINALITY/VALUE: The authors provide a multidisciplinary perspective to inform research that does not perpetuate further alienation and prejudice, but promotes urgent action to redress the social and health injustices experienced by diverse Roma populations across Europe.

The SIPHER Consortium: Introducing the new UK hub for systems science in public health and health economic research.

The conditions in which we are born, grow, live, work and age are key drivers of health and inequalities in life chances. To maximise health and wellbeing across the whole population, we need well-coordinated action across government sectors, in areas including economic, education, welfare, labour market and housing policy. Current research struggles to offer effective decision support on the cross-sector strategic alignment of policies, and to generate evidence that gives budget holders the confidence to change the way major investment decisions are made. This open letter introduces a new research initiative in this space. The SIPHER ( Systems Science in Public Health and Health Economics Research) Consortium brings together a multi-disciplinary group of scientists from across six universities, three government partners at local, regional and national level, and ten practice partner organisations. The Consortium's vision is a shift from health policy to healthy public policy, where the wellbeing impacts of policies are a core consideration across government sectors. Researchers and policy makers will jointly tackle fundamental questions about: a) the complex causal relationships between upstream policies and wellbeing, economic and equality outcomes; b) the multi-sectoral appraisal of costs and benefits of alternative investment options; c) public values and preferences for different outcomes, and how necessary trade-offs can be negotiated; and d) creating the conditions for intelligence-led adaptive policy design that maximises progress against economic, social and health goals. Whilst our methods will be adaptable across policy topics and jurisdictions, we will initially focus on four policy areas: Inclusive Economic Growth, Adverse Childhood Experiences, Mental Wellbeing and Housing.

Adapting primary care for new migrants: a formative assessment.

BACKGROUND: Immigration rates have increased recently in the UK. Migrant patients may have particular needs that are inadequately met by existing primary care provision. In the absence of national guidance, local adaptations are emerging in response to these new demands. AIM: To formatively assess the primary care services offered to new migrants and the ways in which practitioners and practices are adapting to meet need. DESIGN & SETTING: Online survey and case studies of current practice across primary care in the UK. Case studies were selected from mainstream and specialist general practice as well as primary care provision in the third sector. METHOD: Non-probability sample survey of primary care practitioners (n = 70) with descriptive statistical analysis. Qualitative case studies (n = 8) selected purposively; in-depth exploration of organisational and practitioner adaptations to services. Analysis is structured around the principles of equitable care. RESULTS: Survey results indicated that practitioners focused on working with communities and external agencies and adapting processes of, for example, screening, vaccination, and health checks. Lack of funding was cited most frequently as a barrier to service development (n = 51; 73%). Case studies highlighted the prominence partnership working and of an organisational and practitioner focus on equitable care. Adaptations centred on addressing wider social determinants, trauma, and violence, and additional individual needs; and on delivering culturally-competent care. CONCLUSION: Despite significant resource constraints, some primary care services are adapting to the needs of new migrants. Many adapted approaches can be characterised as equity-oriented.

Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England.

Populations practising customary consanguineous marriage have a higher incidence of autosomal recessive genetic disorders than those in which reproductive partners are usually unrelated. In the absence of any national-level response, English service developments to address the additional needs of families living with or at risk of such disorders have been locally led. These interventions remain in their infancy here, as elsewhere in Europe, and important questions remain regarding how appropriate, effective and sustainable responses can be operationalised in practice. This formative service review employed four local case studies together with wider consultation exercises over a 4-year period (2011-2015) to document recent responses to this area of need, issues arising and lessons to inform future work. Service components included the following: enhancements to genetic services to provide family-centred, culturally competent approaches to counselling and testing; community genetic literacy approaches; and capacity development among health professionals. Local approaches were, however, very varied in their detail, scope, level of investment and longevity. The provisions of culturally competent genetic counselling services and community-level genetic literacy interventions were generally well received by those who accessed them. Coordinated action across all service components appeared important for an effective service, but healthcare professionals, particularly general practitioners, were often difficult to engage in this agenda. An evaluative culture and engagement in a wider community of practice had supported service development across sites. However, sustaining investment was challenging, particularly where new services were not well integrated into core provision and where commissioning was driven by expectations of short-term reductions in infant mortality and disability.

Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an 'inclusive' research approach.

PLAIN ENGLISH SUMMARY: Public health research sometimes uses members of communities as researchers. These are called Community Researchers. The advantage of using Community Researchers is that it enables people who live in communities to participate in research by designing the research, gathering data and being involved in analysis. This 'participatory' approach also has the potential to reach communities that might otherwise not be included in research. There are few studies that report the experiences of Community Researchers who take part in such research. This study helps fill this gap by exploring the issues and challenges faced by Community Researchers involved in a study of health and poverty in ethnically mixed areas of east London, UK. Through the accounts of 12 researchers, the study reveals that being a community 'insider' had advantages: many felt they had been able to gain the trust of respondents and access people for the research that would have otherwise been missed. The role of Community Researcher was, however, difficult to manage with some researchers feeling burdened by their role and the increased knowledge they had about the lives of those in their community. In addition to the personal challenges for the Community Researchers, the findings raise various ethical and methodological issues that need consideration in participatory research. ABSTRACT: Background Inclusive research approaches are increasingly employed by public health researchers. Recent methodological development includes the engagement of Community Researchers (CRs), who use their knowledge and networks to facilitate research with the community with which they identify. Few studies have explored the experiences of CRs in the research process, an important element of any comprehensive assessment of the pros and cons of such research endeavours. We report here on the experiences of CRs engaged in a study of health inequalities and poverty in ethnically diverse and disadvantaged areas of London, UK. Methods We draw on the experiences of 12 CRs. Two sets of data were generated, analysed and integrated: debriefing/active reflection exercises throughout the 18-month research process and individual qualitative interviews with CRs, conducted at the end of the project (n = 9). Data were organised using NVivo10 and coded line-by-line using a framework developed iteratively. Synthesis and interpretation were achieved through a series of reflective team exercises involving input from 4 of the CRs. Final consolidation of key themes was conducted by SS and ES. Results Being an 'insider' to the communities brought distinct advantages to the research process but also generated complexities. CRs highlighted how 'something would be lost' without their involvement but still faced challenges in gathering and analysing data. Some CRs found it difficult to practice reflexivity, and problems of ethnic stereotyping were revealed. Conflict between roles as community members and investigators was at times problematic. The approach promoted some aspects of personal empowerment, but CRs were frustrated by the limited impact of the research at the local level. Conclusions Working with CRs offers distinct practical, ethical and methodological advantages to public health researchers, but these are limited by a range of challenges related to 'closeness', orthodox research structures and practices and the complexities of dynamic identities. For research of this type to meet its full potential and avoid harm, there is a need for careful support to CRs and long-term engagement between funders, research institutions and communities.