Title: Involving fathers in ante-natal screening for sickle cell disorders: improving informed decision making
Funder: Department of Health (England)

Abstract: Background Facilitating informed choice among those at risk of recessive disorders is a key NHS policy objective. In 2001, the Department of Health established the Sickle Cell and Thalassaemia Screening Programme. One of aims of the programme is to provide timely ante-natal sickle cell screening to all couples. If a mother is identified as a carrier, her partner should ideally be offered screening, thereby enabling the couple to make an informed choice on the future of the pregnancy. However, recent NHS trial evidence suggests fathers are tested in less than 6% of cases, when their partent is a known carrier. Little is known about why this is. Not engaging with fathers during ante-natal screening for sickle cell disorders creates local difficulties and threatens a national policy objective. Aims The study explores fathers’ attitudes and perceptions of the ante-natal screening and identifies potential factors, which could influence uptake of testing. The aims is to: * understand prospective fathers’ attitudes to ante-natal care and screening for recessive disorders, while comparing these views to those of prospective mothers; * examine fathers’ experience and understanding of ante-natal screening for sickle cell, when their partner is a known trait carrier; * explore the role and experiences of health care professionals in engaging fathers in screening; and * disseminate information to communities, third sector organisations, health care providers, commissioners and policy makers, as a means of facilitating a more successful engagement with fathers during ante-natal screening? Plan of Investigation This qualitative study will begin by conducting six focus group discussions with prospective fathers and mothers, aged between 18 and 34, to explore their attitudes towards men’s involvement in ante-natal screening. We will then use in-depth, semi-structured interviews to explore thirty fathers’ experience of the ante-natal screening process, when their partner is known to be a carrier. Finally, and to locate our findings within the realities of service delivery we will talk to practitioners and commissioners. The research will provide important evidence on how to facilitate choice among fathers, which will be actively disseminated, using local and national networks, to encourage more sensitive policy and practice. Potential Impact NHS policy aims to offer sickle cell screening to 90 per cent of mothers by ten weeks gestation. If a mother is identified as a carrier, her partner should be offered screening. The couple is then able to make an informed choice on the future of the pregnancy. However, recent trial evidence suggests fathers are rarely tested. Little is known about why this is and there is no policy or practice guidance on how to engage with fathers during ante-natal care. This research, by providing evidence that explores the attitudes and experiences of fathers, as well as the views of practitioners, will be able to ensure policy and practice is better equipped to engage with fathers, thereby supporting a national (and local) NHS policy objective, which, despite vast investment, is not been met.


Research activity codes: 4.3 INFLUENCES AND IMPACT
Health categories: BLOOD;REPRODUCTIVE HEALTH AND CHILDBIRTH