Parental experience and understanding of parent-provider discussions of treatment for infants with ureteropelvic junction obstruction

OBJECTIVE: The purpose of the current study was to understand what families identify as necessary information to guide decision-making in the treatment of their child with UPJO. METHODS: We conducted semi-structured interviews with parents of children with UPJO using phenomenological methodology. Data were systematically analyzed according to principles of thematic analysis, using a team-based inductive approach. RESULTS: 32 parents were interviewed. Findings are organized by three major themes including barriers to meaningful participation in decision making, logistical aspects of the decision, and psychosocial aspects of the decision. CONCLUSION: These findings suggest the need to increase parent education and understanding around medical and surgical decision-making, and the need to enhance psychosocial support for more meaningful parental engagement in the surgical decision-making process. PRACTICE IMPLICATIONS: The findings from the interviews highlight the importance of caregivers needing clear and accurate information in order to engage in meaningful discussions related to surgical decision-making for decisions around surgery for UPJO treatment.