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

Stock, Nicola Marie; Rumsey, Nichola

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


Nicola Stock
Occasional Associate Lecturer - CHSS - HSS


© 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.


Stock, N. M., & Rumsey, N. (2015). Starting a family: The experience of parents with cleft lip and/or palate. Cleft Palate-Craniofacial Journal, 52(4), 425-436.

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
Keywords adult, cleft, genetics, parent, psychological adjustment, qualitative, visible difference
Public URL
Publisher URL
Additional Information Additional Information : © 2015. Reprinted by permission of SAGE Publications