Parental and health care professional views on psychosocial and educational outcomes in patients with cleft lip and/or cleft palate

Background Earlier research has investigated psychosocial and educational issues in populations of patients with cleft identifying several areas of concern. The objective of this study was to investigate current beliefs and knowledge about psychosocial and educational issues in parents and health care professionals (HCP) of children with cleft lip and/or palate (CL/P). Method Parents were interviewed concerning the view of society on people with visible differences, their child's social life, educational progress, and information regarding psychosocial care. Interviews with HCPs concerned characteristics related with educational achievement, behavior, and social relationships. Fifteen parents of children 9 to 13 years of age with CL/P and 10 HCPs and were interviewed. Data from interviews was analyzed with thematic analysis. Results Eight children were reported to have emotional issues related to their cleft. Eleven parents, however, did not perceive that their child was treated differently in society. HCPs expressed concerns regarding for example coping with being different, low self-esteem, shyness, disadvantage on first impression, and acceptance of themselves. A majority of the HCPs did not think patient cognition and behavioral or physical development were specifically affected. Conclusions The results revealed that parent experience and views were diverse-from no specific problems related to the cleft, to both emotional and educational issues. The beliefs and level of knowledge in HCPs also varied. All HCPs, however, wished for more information and training regarding psychosocial issues.