Starting a family: The experience of parents with cleft lip and/or palate

Stock, Nicola Marie; Rumsey, Nichola

Abstract

© 2015 American Cleft Palate-Craniofacial Association. Background: One of the key challenges facing young adults with cleft lip and/or palate is making decisions about starting a family, because there is an increased likelihood of their own child being diagnosed with cleft lip and/or palate. Should this occur, a second key challenge is how to deal with their child's diagnosis and subsequent treatment. Objective: To explore the views, experiences and possible support needs of this unique group of parents in order to inform the services provided by nonspecialist Health Professionals, cleft teams, and genetic counselors. Design: Individual telephone interviews eliciting qualitative data. Results: Qualitative thematic analysis identified five themes. Accessing accurate information and appropriate support around heritability presented a significant challenge. Parents described feelings of responsibility and distress at their child's diagnosis, as well as a number of factors that had helped or hindered their adjustment. Parents also described ways in which their own experiences had impacted their parenting style and how becoming a parent had changed the way they felt about their own cleft. Conclusions: Young adults' understanding of what it means to grow up with cleft lip and/or palate may impact their decision to start a family and their experiences of having children. Possible methods of supporting prospective parents through this potentially difficult stage will be discussed.

• Journal Article Type: Article
• Publication Date: Jan 1, 2015
• Deposit Date: Sep 26, 2014
• Publicly Available Date: Mar 28, 2018
• Journal: Cleft Palate-Craniofacial Journal
• Print ISSN: 1055-6656
• Electronic ISSN: 1545-1569
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 52
• Issue: 4
• Pages: 425-436
• DOI: https://doi.org/10.1597/13-314
• Keywords: adult, cleft, genetics, parent, psychological adjustment, qualitative, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/832230
• Publisher URL: http://journals.sagepub.com/doi/full/10.1597/13-314
• Additional Information: Additional Information : © 2015. Reprinted by permission of SAGE Publications
• Contract Date: Jul 20, 2017