Johnson, J. orcid.org/0000-0003-0431-013X, Johnson, O., Heyhoe, J. et al. (2 more authors) (2018) 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, 24 (2). pp. 271-293. ISSN 1074-8407
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.
Metadata
Item Type: | Article |
---|---|
Authors/Creators: |
|
Copyright, Publisher and Additional Information: | © 2018 The Author(s). This is an author produced version of a paper subsequently published in Journal of Family Nursing. Uploaded in accordance with the publisher's self-archiving policy. Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/). |
Keywords: | communication; dysmelia; family nursing; family-centered care; parents; rare diseases; Adult; Child; Decision Making; Family Nursing; Female; Humans; Infant; Limb Deformities, Congenital; Male; Parents; Perinatal Care; Pregnancy; Prenatal Care; Prenatal Diagnosis; Qualitative Research; Rare Diseases |
Dates: |
|
Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 10 May 2023 11:09 |
Last Modified: | 10 May 2023 11:09 |
Status: | Published |
Publisher: | SAGE Publications |
Refereed: | Yes |
Identification Number: | 10.1177/1074840718772808 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:198919 |