Starting a Family: The Experience of Parents With Cleft Lip and/or Palate

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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.

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