Life story of Iranian parents of a child with phenylketonuria: a qualitative study

Parents of a child with phenylketonuria (PKU) face many challenges in childcare. It is crucial for health care workers to understand the situation of parents of a child with PKU and their needs. The purpose of this study was to explore the life story of parents with a child with PKU. This qualitative study has been done with a conventional content analysis approach. Twenty-four parents were selected purposefully. A semi-structured interview was conducted. Data analysis identified three main themes, which included parental reactions, consequences of a child with PKU in parents, and parents’ needs. Parents of children with PKU can be considered people at risk for mental health because of their feelings of isolation and their lonely struggle to manage the disease and its effects on their child. This study shows that mothers need more support due to the misconceptions in and attitudes of their social environment. Therefore, it is necessary to understand this group, their needs and lives, and provide further support and promote empathy in the health system for the parents.