慢性病患儿家属主观感受调查研究

目的了解慢性病患儿家属的主观感受，为制订能有效促进并提高家属的护理能力、应对能力的干预措施提供理论依据。方法应用中文版患儿家属感受量表在4所医院调查214名慢性病患儿家属的感受。结果情绪（支持、安慰）是慢性病患儿家属感知频率最高的因子，其次是内疚和担心、未知的悲哀和愤怒，长期不确定性是感知频率最低的因子；患儿家属感知频率较多、较少的条目中，情绪（支持、安慰）因子、长期不确定性因子各占60％。分别有49％、35．3％、31．4％名家属通过主动询问医护人员，医生、护士主动告知获得疾病信息和护理知识。结论情绪（支持、安慰）、长期不确定性分别是患儿家属感知频率最高与最低的因子，且医护人员给予家属的信息支持不能满足其需要，提示临床医护人员或社区卫生从业人员不仅要满足家属对疾病信息的需求，更要关注患儿家属个体主观的、体验到的或情感支持的需求，以增强家属护理患儿的自信心和应对能力，促进患儿疾病的恢复。

Investigation on the subject experience of parents having a child with chronic disease

Objective: To understand the subjective experience of parents having children with chronic diseases and to provide the theoretical basis for formulating interventions in promoting and enhancing the ability of nursing and response capacity.Methods: The feelings of 214 parents having children with chronic disease from four hospitals were investigated by the Chinese version of feeling scale.Results: The emotion(support,comfort) was the most frequently awared factor,followed by guilt and worry,unknown sorrow an...