Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study

BACKGROUND: An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project utilizing patient and public involvement to identify relevant research questions and develop suitable interventions. METHODS: Persons with experience of a prenatal diagnosis of congenital heart defect in the fetus were interviewed after their participation in a yearlong collaborative research project (n = 9) aiming to explore relevant research questions and develop interventions for expectant parents with a recent prenatal diagnosis. Interviews were analyzed with qualitative content analysis. RESULTS: Respondents acknowledged altruistic and personal value related to the collaboration. They valued the opportunity to contribute to future research so that the care of persons experiencing a prenatal diagnosis may be improved. Mixed feelings were described related to sharing and reliving experiences. While it had been emotionally difficult to relive a traumatic event, it also served as an opportunity to process experiences and psychologically adapt. Respondents with terminated pregnancies appreciated the possibility to meet peers, since it was difficult to find peers in everyday life and talk about their experiences with others. CONCLUSIONS: Researchers who plan to collaborate with persons who have experience of a prenatal diagnosis should be mindful of the potential associated emotional experiences. The appreciation related to meeting peers calls attention to the need for studies that explore peer support.