Abstract
Existing psychosocial research offers little information on the unique challenges and strengths of children adopted from China with cleft lip and/or palate (CL/P). The present study aimed to understand biopsychosocial factors that support positive self-concept in this population. Qualitative, semistructured interviews were conducted with children and their parents. Interpretive phenomenological analysis of transcribed interviews was utilized for data analysis. Participants were recruited in an outpatient, pediatric multidisciplinary cleft clinic during a standard team visit. Participants were ages 8 to 12 years with a diagnosis of isolated cleft lip-palate who were internationally adopted from China before the age of 2 years and English-speaking. Participants also included English-speaking parents. Themes reflecting data from the child and parent subsamples include: (1) child's characteristics, (2) family strengths, (3) adoption identity, (4) cultural identity, (5) coping with a cleft, and (6) social factors. Additional 2 to 3 subthemes were identified for the parent and child subsamples within each broader theme. Findings from this sample suggested factors supporting positive self-concept included pride and self-efficacy in activities, family support, instilment of family values, strategies for coping with a cleft, family belonging, cultural exposure, and normalization of differences. Medical providers can support patients and families by providing education on surgeries, CL/P sequelae and outcomes, and pediatric medical stress. Mental health providers can screen for social and emotional challenges and provide psychoeducation on racial/ethnic socialization, identity development, and coping.
Highlights
It is estimated that 1 in 500 births in China occurs with cleft lip and/or palate (CL/P)
When asked to describe themselves, participants often replied with their activity involvement, typically endorsing pride and self-efficacy in extra-curricular activities and interests
Child participants communicated they were accustomed to cleft lip–palate (CLP) as part of their lived experience, having never known anything else
Summary
It is estimated that 1 in 500 births in China occurs with cleft lip and/or palate (CL/P). Because China is one of the most populous countries in the world, this results in a high prevalence of individuals with CL/P of Chinese descent (Kling et al, 2014). Within the United States, it is common for children with CL/P to have been adopted from China and other East Asian countries (Hansson et al, 2012). Research has documented poorer medical outcomes for children with CL/P adopted from China, including receipt of initial repair surgeries later than recommended (Werker et al, 2017; Kaye et al, 2019) and greater likelihood of surgical revisions and higher fistula rate (Swanson et al, 2014), though some research has suggested similar rates of revisions and fistulas for those adopted children compared to nonadopted children (Goldstein et al, 2014).
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