DECIGEN - Developing a decision aid to support informed family planning decisions for parents of children with a rare genetic condition.

Project lead - Dr Hilary Piercy

Other project staff - Dr Katarzyna Machaczek

Background

The parents of a child diagnosed with a rare genetic condition through the newborn screening programme faces difficult decisions about future pregnancies. Making reproductive decisions in this situation is complex because of the options available and the acceptability of those options.

A Patient decision aid (PtDA) offers a means to support parents' in making their reproductive decisions and assist them in negotiating with healthcare providers to access the services they require.

Aims

This project aims to develop and test the usefulness of a decision aid to assist family planning decision making for parents who have a child diagnosed with a rare genetic condition through the New Born Screening programme.

Project summary

There are two phases to the project. 

Phase 1 involves interviews with key stakeholders including parents, voluntary organisations, healthcare providers in order to gain a detailed understanding of the complexity of reproductive decision making process and identify how a PtDA could best assist that process.

Phase 2 involves working collaboratively with key stakeholders to determine a specification for the PtDA, develop it in line with that specification and then undertake some preliminary testing.

CLAHRC project partners

Sheffield Children's Hospital