Effects of Empowerment Program on the Burden of Care in Mothers of Children with Phenylketonuria

Objectives Phenylketonuria (PKU) is a genetic disease of children that need a lifelong diet for its treatment. Because of the high burden of care, parents and particularly mothers are prone to mental disorders or psychiatric adverse reactions. We aimed to investigate the effect of empowerment of mothers on the burden of caring for children with PKU. Materials & Methods This was a semi-experimental (before-after with control group) study. Overall, 50 mothers of children with PKU that were referred to Endocrine Clinic in Qods Hospital of Qazvin City, northwestern Iran in 2016, were selected and randomly divided into intervention and control groups. Data collection was made by using demographic characteristics of mothers and children and also the Zarit burden interview questionnaires. Empowerment program was delivered during nine sessions of holistic and family oriented empowerment model in the intervention group. The control group received routine services. Data were analyzed using descriptive and inferential statistics through SPSS software. Results In intervention group, the mean score of overall care burden and its dimensions in the mothers of children with PKU in post-test was significantly lower than the pre-test (41.20 ± 5.04 vs. 58.24 ± 3.96; P<0.001); but pre-test and post-test scores in the control group had no significant difference (58.4 ± 5.22 vs. 58.96 ± 4; P=0.327). In other words empowerment program was able to reduce the burden of caring in mothers. conclusion. Empowerment program can reduce the burden of care in mothers of children with PKU. Thus empowerment training is necessary for this group of mothers in the form of workshops and educational pamphlets.