Abstract
BackgroundEarlier 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).MethodParents 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.ResultsEight 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.ConclusionsThe 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.Level of Evidence: Level VI, Diagnostic/Qualitative study
Highlights
The manuscript was presented orally at the national meeting of the Swedish Society of Cleft Lip and Palate and Related Craniofacial Anomalies in Gothenburg on October 5, 2017.Previous studies have investigated psychosocial and educational issues in populations of patients with cleft identifying several areas of concern
In the absence of research focussing on the perceived relevance of wellbeing and academic outcomes in those affected by clefts, the objective of this study was to investigate current beliefs and knowledge of health care professionals (HCPs) and parents of children with cleft lip and/or palate (CL/P) in southern Sweden regarding psychosocial and educational issues related to growing up with a visible cleft
The aim of the study was to inform the development of a training package for HCPs relating to the psychological and educational issues associated with congenital anomalies and visual differences
Summary
Previous studies have investigated psychosocial and educational issues in populations of patients with cleft identifying several areas of concern. Health care professionals working with patients with visible differences have reported that 30– 60% of their patients experience psychosocial challenges. These professionals wished to be able to address patient psychosocial issues but felt hindered in doing so by a lack of time, absence of an appropriate environment, and by the lack of appropriate knowledge and education [1, 2]. 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.
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