Johnson, J orcid.org/0000-0003-0431-013X, Adams-Spink, G, Arndt, T et al. (3 more authors) (2016) Providing Family-centred Care for Rare Diseases in Maternity Services: Parent Satisfaction and Preferences when Dysmelia is Identified. Women and Birth, 29 (6). e99-e104. ISSN 1871-5192
Abstract
Problem and background: Dysmelia is usually detected prenatally or postnatally in maternity services. The provision of family-centred care for parents at the time of initial diagnosis is crucial to facilitate decision making, access to appropriate services, and the provision of parental care-giving, but no research has investigated parent experiences or preferences in this population. Aims: The current research aimed to address this by investigating satisfaction with service, occurrence of signposting and preferences in this group. Methods: Two online surveys were conducted. In the first survey (n = 417), parents reported whether they were offered signposting information and their level of satisfaction with the service they received when initially diagnosed. In the second survey (n = 130), a subgroup of participants who completed the first survey reported their preferences for signposting and health service access after diagnosis. Findings: On average, participants were less than satisfied with the service they received and only 27% were offered signposting information. Satisfaction was higher amongst parents who had been offered signposting information. 91% of parents said they would have wanted signposting information and 67% would have wanted access to a support group. Conclusions: There is a need to improve the family-centeredness of care when dysmelia is identified. Offering signposting information to relevant third-sector organisations may increase parent satisfaction and address parent preferences. These findings could have implications for parents of children with other rare diseases identified in maternity services.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2016 Australian College of Midwives. This is an author produced version of a paper published in Women and Birth. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | Family-centred care; Prenatal care; Maternity services; Dysmelia; Rare diseases |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Psychology (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 14 Apr 2016 11:26 |
Last Modified: | 01 Jul 2017 22:22 |
Published Version: | https://doi.org/10.1016/j.wombi.2016.04.007 |
Status: | Published |
Publisher: | Elsevier |
Identification Number: | 10.1016/j.wombi.2016.04.007 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:98489 |