Optimizing the surgical treatment of the internationally adopted child with cleft lip and/or palate: Understanding the family experience

Abstract

<underline>Background:</underline> Seattle Children's Hospital has seen a 5-fold increase in the number of internationally adopted children who present with cleft lip and/or palate over the past 15 years. Many of these children have unrepaired clefts and would benefit from surgery as soon as feasible after arrival. Little is known about the surgical experience following adoption however, and the ideal timing for proceeding with surgery is unclear. The benefits for speech outcome from an early repair must be weighed against the evolving family relationships, communication challenges and culture adjustments experienced by newly adopted children and their adoptive families. This study was conducted to investigate the experience of families with children undergoing cleft surgery soon after adopting the child from another country. <underline>Methods:</underline> Semi-structured qualitative interviews were conducted with parents of internationally adopted children post-primary repair of cleft lip and/or palate. Interviews were audio-recorded and transcribed and transcripts coded by pairs of investigators from a multidisciplinary study team. Mixed methods using both qualitative and quantitative data sources were used to further contextualize themes relating to timing of surgery that were derived from the parent interviews. <underline>Results:</underline> Twenty parent interviews were conducted and four core themes were identified: 1) parent sources of anxieties prior to surgery, 2) considerations for the timing of surgery, 3) impact of surgical experience on child and family, and 4) modifiable socio-contextual factors. Parents experienced numerous anxieties prior to cleft surgery such as their ability to communicate with their child and their child feeling like he/she may be abandoned. Parents considered a strong child bond with at least one parent and the ability of the child to communicate basic needs to be important before undergoing surgery. In retrospect, parents generally felt the surgical experience did not negatively impact their child or their families, and the majority of parents felt that the surgical experience facilitated bonding and attachment with their child. No difference was found in perceived bonding before or after surgery in families who had initiated surgery sooner after adoption compared to families that waited longer, but surgery was found to facilitate perceived bonding more often in families with children older than 2 years old. <underline>Conclusion:</underline> In our study sample, parents reported that cleft surgery soon after international adoption did not appear to impair child bonding or adjustment. Specific family and provider factors that could optimize the experience for families were identified.