Psychological Well-being and Medical Guidance of Parents of Children With Cleft in Belgium During Feeding Problems of the Child: A Mixed Method Study.

ABSTRACT

PURPOSE: Cleft is one of the most common anomalies affecting 1 in every 500-750 newborns. Depending on the type of cleft and its size, these children may experience feeding problems immediately after birth. Cleft has consequences for the child, as well as for the parents. The aim of this study was to gain a better understanding on the factors influencing the psychological well-being of the parents. Also, the experiences of parents of children with feeding problems and the received medical guidance were studied. DESIGN AND METHODS: A mixed method convergent parallel design was used. In the quantitative study, a cross-sectional design was applied, in which parents completed 3 validated questionnaires about their psychological well-being. For the qualitative research a phenomenological design was used to conduct semi-structured interviews. Ninety parents agreed to join the quantitative study, of which 15 participated in the qualitative study as well. RESULTS: The timing of the diagnosis revealed a significant difference in the depression and stress scores, while the number of children was significant for depression, anxiety, and stress. Other parental- and child-related factors did not cause a significant difference in psychological well-being. Different opinions about medical guidance and feeding problems came up during the interviews. CONCLUSION: With these results, a recommendation toward future medical guidance can be given. The number of children and the timing of diagnosis were found to be significant variables determining the psychological well-being of the parents. All parents agreed on the need for a point of contact and an umbrella framework for a clearer guidance. Moreover, caregivers should have more knowledge about cleft and associated feeding problems.