Objectives: To explore the origins and content of service users' prior knowledge of universal antenatal and newborn screening for haemoglobin disorders; and to explore related familial communication and screening decisions, sources of support and the impact of carrier results on service users and their families.
Design: A cross-sectional, qualitative study using semi-structured interviews with 37 purposively sampled service users.
Results: Families influenced participants' screening knowledge, decisions and service use. Families often provided the knowledge base upon which service information was built, leading to some messages being dismissed or misunderstood. Families were involved in screening decisions explicitly when requested by participants, but also by imposing their views on participants. Families were often participants' main source of support. Implicit familial influences included withdrawing support, avoidance of conversations or controlling the information available to participants. Likewise some participants selectively disclosed information to the family in order to retain control.
Conclusions: Families were highly influential throughout the interviewees' screening experience. The explicit and implicit familial influences on understanding, adaptation, communication and decisions regarding screening need to be further researched to ensure that people undergoing screening are adequately informed and supported. This work highlights the challenges of directing antenatal and newborn screening largely towards individual mothers. Services are often providing information to users in competition with other actors and knowledge which may shape screening decisions and adaptation.