居家胆道闭锁患儿父母积极感受与照护能力的相关性研究

Relationship Between Parents’Positive Feelings and Nursing Ability of Children with Biliary Atresia at Home

目的:探讨居家胆道闭锁(BA)患儿父母积极感受与照护能力的现状,并分析其相关性。方法:采用便利抽样法抽取2019年1月1日—2022年12月31日河南省儿童医院普通外科二病区132例门诊复诊的胆道闭锁Kasai术后患儿父母作为研究对象。分别采用中文版家庭照护测量量表、照顾者积极感受量表、疾病知识了解程度调查表、药物依从性量表、复诊依从性量表进行横断面问卷调查。结果:居家BA患儿父母积极感受得分为(28.16±4.91)分,处于中等偏低水平;疾病照护能力得分为(30.56±7.20)分,处于偏低水平;疾病管理困难得分为(49.52±7.68)分,处于较高水平;Pear-son相关分析结果表明,积极感受与疾病照护能力得分呈正相关(r=0.302,P<0.05),积极感受与疾病管理困难得分呈负相关(r=-0.222,P<0.05)。结论:居家BA患儿父母的积极感受和照护能力均亟需进一步提高,医护人员应为其提供相应的居家康复护理和心理社会支持,减轻患儿父母的身心压力和照顾负担,改善其积极感受水平和照护能力,进而提升其照护质量,促进患儿及其父母的身心健康。

Objective:To explore the status quo of parents’positive feeling and caring ability of children with biliary atresia at home,and to analyze its correlation.Methods:A total of 132 cases of parents of children with biliary atresia after Kasai surgery in Henan Children’s Hospital from January 1,2019 to December 31,2022 were selected by convenience sampling method.The Chinese version of the Family Care Scale,the Caregiver Positive Perception Scale,the Disease Knowledge Level Questionnaire,the Medication Compliance Scale,and the Return Visit Compliance Scale were used for cross-sectional questionnaire survey.Results:The total score of positive feelings of parents with biliary atresia at home was(28.16±4.91),which was at a medium low level.The score of disease care ability was(30.56±7.20),which was low.The disease management difficulty score was(49.52±7.68),which was high.Pearson correlation analysis showed that positive perception was positively correlated with the score of disease care ability(r=0.302,P<0.05),while positive perception was negatively correlated with the score of disease management difficulty(r=-0.222,P<0.05).Conclusion:The positive feelings and caring ability of parents of children with biliary atresia at home need to be further improved.Medical staff should provide appropriate home rehabilitation nursing and psychosocial support to reduce the physical and mental pressure and caring burden of parents of children with biliary atresia at home,improve their positive feelings and caring ability,improve the quality of care,and promote the physical and mental health of children and their parents.