Parents' experiences of having a child with cleft lip and palate

Background. Giving birth to a child with cleft lip and palate (CLP) can be emotionally traumatic for parents. The facial appearance awakens feelings and reactions in the family and other people. Feeding these children in the neonatal period is known to be difficult. Previous research has mainly dealt with visual defects, feeding and speech problems. There is a lack of studies about parents' experiences of having a child with CLP. Aims. This study was performed to investigate parents' experiences of having a child born with a cleft lip or CLP, and how they perceive encouragement and social and mental support from professionals, family and friends. Method. A phenomenographic approach was used. The study was performed at a university hospital in central Sweden. Twenty families (20 mothers and 12 fathers) were interviewed using guided interviews. Findings. Two categories, consisting of three and two subcategories, emerged. Informants described their experiences of having a child with CLP, how they slowly adapted to this situation, the first meeting with their child, support from professionals, and reactions from family and other people. Parents commented on the craniofacial team with satisfaction. Due to a low level of knowledge, other professionals often had difficulty in handling the situation and a poor quality of advice on feeding was reported. Family and friends commented on the child positively or by being neutral, which was seen as a lack of interest. A visible scar on the face was seen as a problem, especially for girls. Most informants expressed anxiety about possible problems with speech. Conclusions. Parents did not look upon their child as handicapped but as having a congenital defect or 'flaw'. The findings of this study could be used in staff education to promote understanding of parents' experiences and how best to help them. They could also be used in the general media to improve public understanding. Future research could explore staff perceptions of this sensitive clinical area.