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.

Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study.

BACKGROUND: Immigrants experience significant challenges when in contact with healthcare and report less satisfaction with maternity care compared to native Swedes. Research that gives voice to pregnant immigrant women and their partners following a prenatal diagnosis of a fetal anomaly is scarce. Thus, the aim of this study was to explore experiences and preferences of care following a prenatal diagnosis of congenital heart defect among Swedish immigrants. METHODS: Pregnant immigrants and their partners were consecutively recruited following a prenatal diagnosis of a congenital heart defect in the fetus. Nine respondents were interviewed in five interviews, four with the aid of a professional interpreter. The material was analyzed using manifest qualitative content analysis. RESULTS: The analysis resulted in five categories: 1) "Trustworthy information", 2) "Language barriers", 3) "Psychosocial situation", 4) "Peer support", and 5) "Religious positions". CONCLUSION: The potential need for interpreter services, visual information, psychosocial support, coordination with welfare officers, and respect for religious positions about termination of pregnancy are all important aspects for health professionals to consider when consulting immigrants faced with a prenatal diagnosis of fetal anomaly in the fetus. Peer support within this context needs to be further explored in future studies.

Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: an explorative study to gain insights into perspectives on future research.

PLAIN ENGLISH SUMMARY: Ultrasound examinations during pregnancy have led to an increased number of detected heart defects in fetuses. Pregnant women and their partners are often unprepared for these news, and experience several difficulties following the diagnosis. We asked persons with personal experience to participate in group discussions about relevant future research topics. The discussions revealed that future research should investigate supplemental written information or follow-up appointments with health professionals. Researchers were also encouraged to focus their efforts on structures that offer emotional support. The emotional support could be from those that share similar experiences, or additional support from a health professional. The results of this study illustrate the need for researchers to continue their work to test ways to support persons faced with these diagnoses. ABSTRACT: Background A prenatal diagnosis of a congenital heart defect in the fetus is a traumatic life event for pregnant women and their partners. Previous research indicates a need for research that takes steps to support these individuals following the diagnosis. Patient and public involvement is a proposed method of identifying relevant research topics, leading to patient-focused research protocols and relevant support interventions.The overarching aim of this study was to gain insights into relevant future research topics among persons faced with a prenatal diagnosis of congenital heart defect in the fetus. Methods One group of parents to prenatally diagnosed children with a congenital heart defect (n = 5) and one group of individuals with experience of termination of a pregnancy following a prenatal diagnosis of a congenital heart defect (n = 5) were purposefully recruited. Each group of representatives was involved in a face-to-face focus group discussion, analyzed through qualitative content analysis. Results The representatives suggested a need for future research that addresses informational support in the forms as supplemental written information or follow-up consultations. Moreover, interventions that offer emotional support were suggested, in the forms of peer support or additional professional psychosocial support. Conclusion Several interventions were suggested by patient representatives, indicating a need for multiple intervention studies to be conducted in the context of a prenatal diagnosis of a congenital heart defect in the fetus. We recommend that future studies test supplemental written information, follow-up consultations, peer support, and additional professionals psychosocial support following the diagnosis.