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.

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.

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.