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.

Engaging minorities in researching sensitive health topics by using a participatory approach.

AIM: To report the use of a community participatory approach (PA) in a project investigating tuberculosis (TB) in UK Somali migrants. BACKGROUND: It is crucial to address health inequalities and persistent health problems, particularly in groups who are often excluded or seem hard to reach. TB is an illness stigmatised in the Somali population, making it a difficult topic for research. In this study, a community PA was used to investigate TB and members of the Somali community were recruited as co-researchers. DATA SOURCES: Four community researchers (CRs), eight focus groups (n=48), interviews with members of the community (n=24), people with TB and ex-TB patients (n=14), and healthcare practitioners (n=18). REVIEW METHODS: This is an informative paper. Discussion The paper describes the approach used in the recruitment of community researchers and how engaging early with community leaders using oral communication made it possible to research TB in the Somali community. CONCLUSION: The PA led to capacity building, trust and a longer sustainable partnership with members of the Somali community. The success of the approach in the study suggests that there are valuable lessons for those researching similar topics with minority groups. IMPLICATIONS FOR PRACTICE/RESEARCH: Involving people in health research topics with a stigma is possible. This paper highlights how this could be achieved using a community PA and the recruitment of community members as co-researchers. However, the PA is time-consuming and will depend on the skills of academic researchers in knowing and engaging with the community.

Long-term ill health and the social embeddedness of work: a study in a post-industrial, multi-ethnic locality in the UK.

Against the background of an increasingly individualising welfare-to-work regime, sociological studies of incapacity and health-related worklessness have called for an appreciation of the role of history and context in patterning individual experience. This article responds to that call by exploring the work experiences of long-term sick people in East London, a post-industrial, multi-ethnic locality. It demonstrates how the individual experiences of long-term sickness and work are embedded in social relations of class, generation, ethnicity and gender, which shape people's formal and informal routes to work protection, work-seeking practices and responses to worklessness. We argue that this social embeddedness requires greater attention in welfare-to-work policy.

Migration and maternity: insights of context, health policy, and research evidence on experiences and outcomes from a three country preliminary study across Germany, Canada, and the United kingdom.

A group from Germany, Canada, and the United Kingdom undertook country-specific scoping reviews and stakeholder consultations before joining to holistically compare migration and maternity in all three countries. We examined four interlinking dimensions to understand how international migrant/minority maternal health might be improved upon using transnational research: (a) wider sociopolitical context, (b) health policy arena, (c) constellation, outcomes, and experiences of maternity services, and (d) existing research contexts. There was clear evidence that the constellation and delivery of services may undermine good experiences and outcomes. Interventions to improve access and quality of care remain small scale, short term, and lacking in rigorous evaluation.

Improving capacity in ethnicity and health research: report of a tailored programme for NHS Public Health practitioners.

AIM: To determine whether an intervention designed to enhance research capacity among commissioners in the area of ethnicity and health was feasible and impactful, and to identify programme elements that might usefully be replicated elsewhere. BACKGROUND: How healthcare commissioners should be equipped to understand and address multiethnic needs has received little attention to-date. Being able to mobilise and apply evidence is a central element of the commissioning process that requires development. Researching ethnicity and health is widely recognised as challenging and several prior interventions have aimed to enhance competence in this area. These have, however, predominantly taken place in North America and have not been evaluated in detail. METHODS: An innovative research capacity development programme was delivered to public health staff within a large healthcare commissioning organisation in England. Evaluation methodology drew on 'pluralistic' evaluation principles and included formative and summative elements. Participant evaluation forms gave immediate feedback during the programme. Participants also provided feedback at two weeks and 12 months after the programme ended. In addition, one participant and one facilitator provided reflective accounts of the programme's strengths and weaknesses, and programme impact was traced through ongoing partnership work. FINDINGS: The programme was well received and had a tangible impact on knowledge, confidence and practice for most participants. Factors important to success included: embedding learning within the participants' work context; ensuring a balance between theory and practical tips to enhance confidence; and having sustained interaction between trainers and participants. Despite positive signs, the challenging nature of the topic was highlighted, as were wider structural and cultural factors that impede progress in this area. Although it is unrealistic to expect such programmes to have a major impact on commissioning practices, they may well make an important contribution to raising the confidence and competence of staff to undertake work in this area.

Contributions and challenges of cross-national comparative research in migration, ethnicity and health: insights from a preliminary study of maternal health in Germany, Canada and the UK.

BACKGROUND: Public health researchers are increasingly encouraged to establish international collaborations and to undertake cross-national comparative studies. To-date relatively few such studies have addressed migration, ethnicity and health, but their number is growing. While it is clear that divergent approaches to such comparative research are emerging, public health researchers have not so far given considered attention to the opportunities and challenges presented by such work. This paper contributes to this debate by drawing on the experience of a recent study focused on maternal health in Canada, Germany and the UK. DISCUSSION: The paper highlights various ways in which cross-national comparative research can potentially enhance the rigour and utility of research into migration, ethnicity and health, including by: forcing researchers to engage in both ideological and methodological critical reflexivity; raising awareness of the socially and historically embedded nature of concepts, methods and generated 'knowledge'; increasing appreciation of the need to situate analyses of health within the wider socio-political setting; helping researchers (and research users) to see familiar issues from new perspectives and find innovative solutions; encouraging researchers to move beyond fixed 'groups' and 'categories' to look at processes of identification, inclusion and exclusion; promoting a multi-level analysis of local, national and global influences on migrant/minority health; and enabling conceptual and methodological development through the exchange of ideas and experience between diverse research teams. At the same time, the paper alerts researchers to potential downsides, including: significant challenges to developing conceptual frameworks that are meaningful across contexts; a tendency to reify concepts and essentialise migrant/minority 'groups' in an effort to harmonize across countries; a danger that analyses are superficial, being restricted to independent country descriptions rather than generating integrated insights; difficulties of balancing the need for meaningful findings at country level and more holistic products; and increased logistical complexity and costs. SUMMARY: In view of these pros and cons, the paper encourages researchers to reflect more on the rationale for, feasibility and likely contribution of proposed cross-national comparative research that engages with migration, ethnicity and health and suggests some principles that could support such reflection.

Long-term health conditions and Disability Living Allowance: exploring ethnic differences and similarities in access.

Long-term health conditions affect a substantial proportion of working-age adults, often reducing their employment chances and their incomes. As a result, welfare benefits including those intended to off-set additional expenditure (primarily Disability Living Allowance [DLA]) can make an essential contribution towards maintaining living standards. Given the differences in rates of long-term health conditions for different ethnic groups, issues of access to relevant benefits may be particularly salient for certain communities. We lack, however, detailed examination of the factors that influence take-up of DLA across ethnic groups. In this paper, secondary analysis of Labour Force Survey data is combined with detailed new qualitative work, to examine patterns of receipt and issues of access to DLA across four ethnic groups. DLA receipt among individuals reporting long-term health conditions is low; but Bangladeshi, Pakistani and Black African individuals have significantly lower levels of receipt than White British respondents with comparable health and socioeconomic characteristics. Common factors that appeared to discourage DLA claims across the ethnic groups considered included: a desire to conceal impairment and a reluctance to assume a 'disabled' identity; limited benefit knowledge or specialist support; perceptions that the benefits system is complex and stressful; and concerns about the legitimacy of claiming. But our findings also suggest differences between the groups. For example, 'being' Ghanaian appeared to place particular constraints upon the assumption of a disabled identity. Ethnic identity also implied processes of inclusion and exclusion in social networks resulting in differential access to information and 'know-how' in relation to the benefits system. Policy clearly has a role in legitimising claiming and improving accurate information flows and thereby improving take-up of benefit among those in great need.