The effect of nursing empowerment program applied to families of children with phenylketonuria on coping attitudes of families and phenylalanine levels of children

The study was carried out experimentally to examine the effects of the strengthening program applied to the families of 0-3 year old children diagnosed with phenylketonuria (PKU), on the families' coping attitudes, their knowledge about the disease, and the phenylalanine levels of the children. The data of the study were collected in Family Health Centers affiliated to Van Provincial Health Directorate between 24.11.2021-28.02.2023. The study was completed with the families of 36 children with PKU, 19 of whom were in the experimental group and 17 in the control group, who met the inclusion criteria. Nursing empowerment program (HGP) was applied to the families in the experimental group for 10 weeks. The scope of this program; It consists of face-to-face training on disease management, the delivery of the training guide (booklet) prepared for the families of children diagnosed with PKU, phone calls and counseling services during the education process. The families in the control group were given a routine practice (regular blood monitoring, taking into account the recommendations of the relevant physician / dietitian, etc.) during the application of the study, and the same training and booklet were given after the application. Data; It was collected with "Information Form Introducing Children and Family", "Assessment of Knowledge Levels of Families About PKU", "Evaluation Scale of Coping Attitudes". The mean level of knowledge about PKU of the families in the experimental group (93.15±40.15) was found to be statistically significantly higher than that of the control group (53.24±18.20) (p<0.05). The mean blood FA levels of the children in the experimental group (325.17±161.10 µmol/L) were found to be statistically significantly lower than the control group (525.59±330.76 µmol/L) (p<0.05). It was determined that the total mean score of the families in the experimental group on the post-test coping attitudes after HGP (96.95±8.08) was higher than the mean score of the families in the control group (83.29±9.03) (p<0.05). As a result, it was determined that HGP was effective in keeping the blood FA value of children in the reference range, and it increased the level of knowledge and coping attitudes of families about the disease.