복합만성질환을 가진 자녀를 둔 부모의 소아청소년 완화의료 요구도

Abstract

Purpose: The purpose of this study was to investigate the needs for pediatric palliative care (PPC) among parents of children with complex chronic conditions (CCCs) and to investigate differences in the needs for PPC according to their general characteristics. Methods: A cross-sectional survey was conducted between March 28 and May 18, 2018. Parents (N=96) who had a child under 18 years with a CCC were recruited. Data were analyzed using descriptive statistics, independent t-test, and one-way ANOVA. Results: The overall average need for PPC was 3.58±0.33 out of 4.00. In terms of care for the subjects' children, the highest need was physical care, followed by psychosocial and spiritual care. In the sub-dimensions, preservation of physical function received the highest score. Of the items, the highest need was for seizure control. In terms of care for the subjects themselves, the highest need was for psychosocial care, followed by bereavement and spiritual care. In the sub-dimensions, communication received the highest score. Of the items, the highest need was for smooth communication with medical staff. Differences in needs for PPC according to participants’ general characteristics were not statistically significant. Conclusion: Medical staff should provide PPC according to the priorities of parents’ perceived needs.