Relationship Between Perceived Social Support and Distress Tolerance in Parents with Phenylketonuria Children: Mediating Role of Self-Compassion

Background: Phenylketonuria (PKU) is an autosomal recessive disorder in the metabolism of the amino acid phenylalanine. This disease affects not only the life of the child but also the life of the parents. Objectives: The current study aimed to examine the direct and indirect relationships between perceived social support, self-compassion, and distress tolerance in a sample of parents with PKU children. Methods: One hundred and fifty-seven parents were recruited from the Province Metabolic Patients Support Charity in Zanjan (Iran) through available sampling. The study utilized three instruments: The Multidimensional Scale of Perceived Social Support (MSPSS), the Self-Compassion Scale (SCS), and the Distress Tolerance Scale (DTS). Results: The data were analyzed using SmartPLS software (version 3.3), and the relationship between variables was assessed through partial least squares structural equation modeling. According to the bootstrapped results, the direct effects of perceived support from significant others on distress tolerance (β = 0.39, P = 0.0001) and self-compassion on distress tolerance (β = 0.68, P = 0.0001) significant others (β = 0.26, P = 0.0001) via self-compassion on distress tolerance were significant and positive. Conclusions: The study indicates that joining support groups and exchanging experiences with other parents of PKU children can enhance feelings of effectiveness and reduce isolation among these individuals as parents. Self-compassion plays a crucial role in perceiving challenges as part of the human experience, providing a valuable defense against personal distress that might arise while caring for a child with PKU.