This is a qualitative study exploring the perceptions of members from the Pakistani/Kashmiri community living in Luton, UK, on the adverse health risks associated with consanguineous marriages. Rates of stillbirths and infant mortality are higher than the national average in Luton and the existing evidence base suggests that these higher rates may be associated with consanguinity (especially first cousin marriages) in highly consanguineous populations, such as the Pakistani/Kashmiri ethnic group. This qualitative study included 9 focus groups and 10 one to one in-depth interviews (n = 58) with members from the Pakistani/Kashmiri community in Luton during 2012. Audio-recorded transcripts were analysed using framework analysis. Emerging themes included a limited knowledge, opposition to evidence and need for a more culturally sensitive health services approach. Findings from the focus group and interview discussions indicated that participants had a limited and varied understanding of genetic risk and indicated a lack of discussion within the community regarding genetic risk. They also opposed evidence that may link consanguineous marriages with infant mortality, stillbirth or genetic disorders that led to disability. The participants stressed the need for culturally sensitive and locally constructed services for information on genetic risk and services. These findings may be used to address higher rates of infant mortality and adverse health impacts associated with higher rates of consanguinity in Luton and elsewhere, through a partnership approach, improve upon current services and develop culturally appropriate services.
Keywords: Community engagement; Consanguinity; Genetic risk; Infant mortality; Stillbirth.