Investigation of the relationship between perception of uncertainty and the effect of the disease on the family of the parents of infants with cleft lip/palate

The study was carried out in two stages as methodological and relational descriptive in order to examine the relationship between the perception of uncertainty of the parents of infants diagnosed with cleft lip/palate and the effect of the disease on the family. The population of the study consisted of the parents of babies aged 0-3 months who applied to the plastic surgery polyclinics of a university hospital. In the first stage, the adaptation of the Parental Uncertainty Perception Scale-Diagnosis (PPUS-D) into Turkish, validity and reliability studies were carried out with 240 parents, and as a result of Confirmatory Factor Analysis, it was concluded that the scale was valid and reliable for the sample in the study. In the second stage, the relationship between the parents' perceptions of uncertainty and the effect of the disease on the family was examined with a new sample group (n=200) using the Parent and Infant Descriptive Information Form, PPUS-D, and the Family Impact Scale. Student-t Test, ANOVA, Bonferroni Test, Pearson Correlation Analysis and Chi-square were used in the analysis of the data. For the perception of uncertainty, the scale score average was found to be high (85.59 ±12.46). Uncertainty perceptions were found to be higher for parents whose babies could not be diagnosed before birth, who were not satisfied with the information provided, and whose income level was low. As the satisfaction of the parents with the hospital services decreased, the level of perception of uncertainty increased. The effect of the disease on the parents was found to be moderately high, with an average score of (52.22±7.70). The highest score in the Parents' Family Impact Scale sub-dimension mean score was found in the personal strain dimension with 30.07±3.84. A positive significant correlation was found between PPUS-D and Family Impact Scale total score (r=0,225) and financial burden (r=0,197), familial and social impact (r=0,180), personal strain (r=0,166) and coping (r=0,219) sub-items (p<0.05). The highest expectations from hospital management were 'competent health personnel' (27.1%). According to results of this study, recommendations for further studies included that how the uncertainty and illness affect families and measure care outcomes and also suggestions for making administrative arrangements that will increase the quality of nursing care in the care management of babies with cleft lip/palate.