Minority ethnic community participation in needs assessment and service development in primary care: perceptions of Pakistani and Bangladeshi people about psychological distress

Objectives To promote community participation in exploring perceptions of psychological distress amongst Pakistani and Bangladeshi people, in order to develop appropriate services. Design Training and facilitation of resident community members (as community project workers), to define and conduct qualitative research involving semistructured interviews in their own communities, informing primary care led commissioning and service decision making. Setting A socio-economically disadvantaged inner-city locality in the UK. Participants One-hundred and four South Asian people (49 of Pakistani and 55 of Bangladeshi origin), interviewed by 13 resident community members. Results All community project workers completed training leading to a National Vocational Qualification, and successfully executed the research. Most study respondents located their main sources of stress within pervasive experience of racism and socio-economic disadvantage. They were positive about `talking' and neutral listening as helpful, but sought strategies beyond non-directive counselling services that embraced practical welfare advice and social support. The roles of primary health care professionals were believed to be restricted to physical ill health rather than personal distress. The importance of professionals' sex, age, ethnicity and social status were emphasized as affecting open communication. Practical recommendations for the re-orientation and provision of services were generated and implemented in response to the findings, through dialogue with a primary care commissioning group, Health and Local Authority, and voluntary agencies. Conclusions The work illustrates the feasibility and value of a community participation approach to research and service development in addressing a challenging and neglected area of minority ethnic health need. It offers one model for generating responsive service change in the context of current health policy in the UK, whilst also imparting skills and empowering community members. The study findings emphasize the need to recognize the social contexts in which distress is experienced and have implications for effective responses.