The impact of caring for children with posterior urethral valves

• Published in: Acta Paediatrica Vol. 110; no. 3; pp. 1025 - 1031
• Main Authors: Tan, Peony Shih Pui, Mallitt, Kylie‐Ann, McCarthy, Hugh J., Kennedy, Sean E.
• Format: Journal Article
• Language: English
• Published: Norway Wiley Subscription Services, Inc 01-03-2021
• Subjects: Caregivers; Child; Child Health Services; Children; Children & youth; chronic kidney disease; congenital anomalies of the kidney and urinary tract; Cross-Sectional Studies; family‐centred care; Humans; Kidney diseases; Professional-Family Relations; quality of life; Surveys and Questionnaires; chronic kidney disease; congenital anomalies of the kidney and urinary tract; quality of life; family-centred care
• ISSN: 0803-5253; 1651-2227
• DOI: 10.1111/apa.15516

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.