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Abstract

Parents who know they are carriers of a genetically transmitted disease because they gave birth to an affected child are being offered a number of reproductive options in a subsequent pregnancy. We describe the attitudes and motives of parents of children with cystic fibrosis (CF) who were initially determined to use prenatal testing but eventually refused it. Based on our observations and clinical impressions we built a model of change that entails a series of stages and depicts change as a process. This begins with the provision of comprehensive information and emotional support through health professionals (Stage 1). The parents then engage in intense confrontation with the impact of prenatal testing and are exposed to influences from many sides. The repeated comparing of the arguments results in uncertainty and distress (Stage 2). When pregnancy occurs a decision must be made and the process culminates in participating in a life-or-death decision. If the parents cannot cope with that responsibility then a change towards rejection of prenatal diagnosis is likely (Stage 3). This phenomenon seems to be the most decisive factor. A case vignette is used to illustrate this model which may be applicable to many individuals who face major and emotionally fraught decisions.

Keywords

cystic fibrosis preimplantation genetic diagnosis prenatal diagnosis theory of change

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How and Why Parents Change Their Attitudes to Prenatal Diagnosis

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