ABSTRACT
This chapter describes how the research was designed, and demonstrates the value of adopting complementary methodologies. It discusses the research designed to evaluate the response of families with a confirmed positive result, details of the other studies will be published elsewhere. In a research setting where it is possible to adopt complementary methodologies, such as the newborn screening programme for Duchenne muscular dystrophy, the great advantage is that one gets the best of both worlds. The structure of the psychosocial evaluation was reflexively developed during its early years, with several quantitative measures being introduced as a result of feedback from the qualitative elements. There were strong arguments for adopting a purely qualitative design. A new, qualitative method of collecting secondary data which is called the 'Technique of Professional Accounting'. This technique involves including accounts of events in the case studies from health professionals who are working with the family.
