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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
Uppsala universitet.
Uppsala universitet.
Uppsala universitet.
Karolinska institutet.
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2016 (English)In: Research Involvement and Engagement, E-ISSN 2056-7529, Vol. 2, no 35Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2016. Vol. 2, no 35
Keyword [en]
Congenital heart defects, Needs assessment, Patient participation, Prenatal diagnosis
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-6494DOI: 10.1186/s40900-016-0048-5OAI: oai:DiVA.org:esh-6494DiVA: diva2:1162349
Available from: 2017-12-04 Created: 2017-12-04 Last updated: 2017-12-04Bibliographically approved

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