Involving fathers in ante-natal screening for sickle-cell disorders: improving informed decision making

Facilitating informed choice among those at risk of recessive genetic disorders is a key NHS policy objective. Recessive genetic disorders occur when both parents carry a genetic trait, which can be passed on to their offspring. If both carry the trait, there is a one-in-four chance in every pregnancy that their child will be born with the disorder. Sickle cell disorders represent one such recessive genetic disorder. There are estimated to be 240,000 sickle cell trait carriers in the UK and over 15,000 people with the condition.

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 testing to all couples (that is screening when a woman is pregnant). If a mother is identified as a carrier, during her pregnancy her partner should ideally be offered screening. However, recent evidence suggests fathers are rarely tested. 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.

This two year qualitative study explores fathers' attitudes, experiences and perceptions of ante-natal screening; and identifies potential factors which could influence uptake of testing. The specific aims are 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

Funding

Funder(s):  National Institute for Health Research – Research for Patient Benefit
Start Date: January 2012
Expiry Date: December 2013 

Members

Internal Staff

Collaborative Staff

  • Simon Dyson (DeMontfort University)
  • Chris Bennett (Leeds teaching Hospitals NHS Trust)

Project Advisory Group

  • Abdul Alim, Organisation for Sickle Cell Anaemia Research and Thalassaemia Support (OSCAR), Sandwell
  • Elizabeth Anionwu, Emeritus Professor of Nursing: University of West London
  • Liz Aram, NHS Sickle Cell and Thalassaemia Screening Programme
  • Cathy Coppinger, NHS Sickle Cell and Thalassaemia Screening Programme
  • Verna Davis, Sickle Cell Counsellor, Manchester PCT
  • Sue Dyson, De Monfort University
  • Sue Jammeh, Leeds Sickle Cell Patient Support Group
  • Nighat Khan, Sheffield Sickle Cell and Thalassaemia Foundation
  • Joe Kai, University of Nottingham
  • Khudeja Khanom, Organisation for Sickle Cell Anaemia Research and Thalassaemia Support (OSCAR), Sandwell
  • Claire Laurent, NHS Sickle Cell and Thalassaemia Screening Programme
  • Rachel McFee,Organisation for Sickle Cell Anaemia Research and Thalassaemia Support (OSCAR), Sandwell
  • Olivier Mmounda, ASYABI, Leeds
  • Comfort Ndive, Sickle Cell Society
  • Stella Obadi, Leeds Sickle Cell Patient Support Group
  • Kate Reed, University of Sheffield
  • Iyamide Thomas, Sickle Cell Society
  • Jill Walker, Regional antenatal/child Health Screening Manager, NHS Yorkshire and the Humber

Public Health and Society Research in the Department of Health Sciences