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

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

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
• Acceptance Date: Nov 1, 2018
• Online Publication Date: Mar 8, 2019
• Publication Date: Mar 31, 2019
• Deposit Date: Nov 1, 2018
• Publicly Available Date: Sep 9, 2019
• Journal: British Journal of Midwifery
• Print ISSN: 0969-4900
• Publisher: MA Healthcare
• Peer Reviewed: Peer Reviewed
• Volume: 27
• Issue: 3
• Pages: 151-160
• 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
• Public URL: https://uwe-repository.worktribe.com/output/849704
• 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
• Contract Date: Nov 1, 2018