A Framework For Describing The Influence Of Service Organisation And Delivery On Participation In Fetal Anomaly Screening In England

Objective. The aim of this research was to explore the influence of service organisation and delivery on providers and users' interactions and decision-making in the context of Down's syndrome screening. Methods. A qualitative descriptive study involving online interviews conducted with a purposive sample of 34 community midwives, 35 pregnant women, and 15 partners from two maternity services in different health districts in England. Data were analysed using a combination of grounded theory principles and content analysis and a framework was developed. Results. The main emerging concepts were organisational constraints, power, routinisation, and tensions. Providers were concerned about being time-limited that encouraged routine, minimal information-giving and lacked skills to check users' understanding. Users reported their participation was influenced by providers' attitudes, the ambience of the environment, asymmetric power relations, and the offer and perception of screening as a routine test. Discordance between the national programme's policy of nondirective informed choice and providers' actions of recommending and arranging screening appointments was unexpected. Additionally, providers and users differing perceptions of emotional effects of information, beliefs, and expectations created tensions within them, between them, and in the antenatal environment. Conclusions. A move towards a social model of care may be beneficial to empower service users and create less tension for providers and users.