Perceived burden of nurturing in pediatric organ transplantation in Japan

Abstract

【Objective】The aim of this study was to reveal relevant factors of parents' perceived burden of nurturing in pediatric organ transplantation (liver, kidney, or heart) in Japan.
【Design ' Methods】Cross-sectional surveys of self-report anonymous questionnaires and medical records were completed from September 2013 to March 2014. Perceived burden of nurturing was measured by existing transplant-nonspecific and newly developed transplant-specific scale.
【Results】We received 87 participation (participation rate: 83.7%). “Participation in support group" (standardized partial regression coefficients: β＝－0.19); “lower perceived stigma for organ transplantation from others" (β=0.37); “higher recipient age at survey" (β＝－0.42); “shorter commuting time between home and primary follow-up hospital" (β=0.19); “higher family functioning" (β＝－0.22); and “higher social support" (β＝－0.22) were related to lower perceived burden of nurturing (adjusted coefficients of determination=0.52).
【Conclusion】Based on these results, the facilitation of support from family, society, and support group and establishment of emergency procedures including local hospitals are important for decreasing parents' perceived burden of nurturing.