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Parents’ experiences of postnatal diagnosis and care following the birth of a child with cleft lip and/or palate

Costa, Bruna; Martindale, A; Williams, JR; Stock, Nicola Marie

Authors

A Martindale

JR Williams



Abstract

Background: Receiving the news that their child has a health condition, such as a cleft lip and/or palate (CL/P), can have a considerable psychological impact on parents. Yet previous research has highlighted parental dissatisfaction and service-related issues.

Aims: To investigate the experiences of parents of children born with CL/P in relation to postnatal diagnosis and neonatal care.

Method: Data were collected from 470 parents using an online mixed-methods survey.

Findings: The majority of participants received their diagnosis and postnatal care from a midwife. 61% were satisfied with their overall diagnostic experience. However, participants also perceived a lack of sensitivity, knowledge and empathy from hospital staff. Further issues were raised regarding the implications of a ‘delayed’ diagnosis including feeding difficulties.

Conclusion: Better training and support for midwives is recommended to address the challenges associated with the postnatal diagnosis and neonatal care of children with CL/P.

Journal Article Type Article
Publication Date Mar 31, 2019
Journal British Journal of Midwifery
Print ISSN 0969-4900
Publisher Mark Allen Healthcare
Peer Reviewed Peer Reviewed
Volume 27
Issue 3
Pages 151-160
APA6 Citation Costa, B., Martindale, A., Williams, J., & Stock, N. M. (2019). Parents’ experiences of postnatal diagnosis and care following the birth of a child with cleft lip and/or palate. British Journal of Midwifery, 27(3), 151-160. https://doi.org/10.12968/bjom.2019.27.3.151
DOI https://doi.org/10.12968/bjom.2019.27.3.151
Keywords cleft lip and palate, parent experience, postnatal diagnosis, neonatal care, feeding, mixed-methods, visible difference
Publisher URL https://doi.org/10.12968/bjom.2019.27.3.151
Additional Information Additional Information : This document is the Accepted Manuscript version of a Published Work that appeared in final form in British Journal of Midwifery, copyright © MA Healthcare, after peer review and technical editing by the publisher. To access the final edited and published work see https://doi.org/10.12968/bjom.2019.27.3.151.
Corporate Creators : VTCT Foundation Research Team at the Centre for Appearance Research