Parent Experiences and Preferences When Dysmelia Is Identified During the Prenatal and Perinatal Periods: A Qualitative Study Into Family Nursing Care for Rare Diseases

Journal of Family Nursing
Judith JohnsonAlice Dunning

Abstract

Several rare diseases are regularly identified during the prenatal and perinatal periods, including dysmelia. How these are communicated to parents has a marked emotional impact, but minimal research has investigated this. The purpose of this study was to explore parent experiences and preferences when their baby was diagnosed with dysmelia. Mothers and fathers were interviewed. Data were analyzed using thematic analysis. The overriding emotion parents experienced was shock, but the extent of this was influenced by several factors including their previous experience of disability. Four key needs of parents were identified, including the need for signposting to peer support organizations, for information, for sensitive communication, and for a plan regarding their child's care. Parents wanted immediate information provision and signposting to peer support, and for discussions regarding possible causes of the dysmelia or termination (in the case of prenatal identification) to be delayed until they had processed the news.

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Citations

Jun 8, 2018·Academic Medicine : Journal of the Association of American Medical Colleges·Judith Johnson, Maria Panagioti
Feb 19, 2019·Ultrasound : Journal of the British Medical Ultrasound Society·Judith JohnsonLouise Hall
Feb 18, 2020·Ultrasound : Journal of the British Medical Ultrasound Society·Liz TomlinJudith Johnson
Oct 17, 2020·American Journal of Medical Genetics. Part a·Chelsea M WithersAideen McInerney-Leo
Aug 19, 2021·Scandinavian Journal of Caring Sciences·Suja SomanadhanPhilip J Larkin

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