Stress and quality of life in parents of children with phenylketonuria

Abstract

Background: Phenylketonuria is a hereditary disease caused by the lack or deficiency of phenylalanine hydroxylase enzyme activity. Parents of children with phenylketonuria undergo significant stress during their childcare years. They are also responsible for controlling their children's dietary treatment and this may affect their quality of life. The purpose of this study was to investigate the relationship between stress and quality of life in parents of children with phenylketonuria.

Methods: The present cross-sectional study is a correlation-analytical research performed on parents of children with phenylketonuria in Kerman province in Iran in 2017. In total, 124 parents were chosen by consensus method. Parents completed the perceived stress scale and quality of life (SF36). SPSS software version 18 (https://www.presidion.com/software/ibm-spss-trial-downloads/) was used to analyze the data.

Results: Total scores of stress and quality of life were 28.81 ± 8.74 and 45.97 ± 21.22. There was a significant negative correlation between quality of life and perceived stress (p < 0.001 and ρ = -0.58).

Conclusion: Parents of children with phenylketonuria have moderate quality of life and relatively high stress. The medical community and authorities should take steps to improve the quality of life and reduce stress experienced by parents of children with phenylketonuria.

Keywords: parents; phenylketonuria; quality of life; stress.