The impact of caring for children with posterior urethral valves

Aim: To investigate and describe factors contributing to the impact of caring for a child with posterior urethral valves and to determine the extent to which families view their care as family-centred, and whether this can affect the impact of care. Methods: A cross-sectional, survey-based study involving primary caregivers of children with posterior urethral valves. Caregivers completed the Impact on Family Scale (IOFS) and the Measure of Processes of Care (MPOC). Regression analyses were used to assess the relationship between child-related variables, demographic variables, MPOC and IOFS scores. Results: Thirty-one primary caregivers completed both questionnaires. Caregivers of children with moderate/severe chronic kidney disease (CKD) scored higher on the IOFS compared to those caring for children with mild CKD. Caregivers rated care received highly but reported lower scores in subscales related to information provision. Receiving less respectful and supportive care was significantly associated with lower IOFS scores. Conclusion: The impact of caring for a child with posterior urethral valves is variable and is strongly determined by the severity of the associated CKD. Further research is required to show whether improving family centredness of care can reduce the impact of caring for children with posterior urethral valves.