家庭治疗和护理行为干预模式在血友病患儿中的应用

目的探讨适合地方血友病诊疗中心开展的儿童血友病家庭治疗和护理行为的干预模式。方法由血友病护士和2～18岁的血友病患儿及其父母组成护理干预小组，针对儿童血友病家庭治疗和护理中存在的问题进行讨论和归纳，通过文献回顾和专家咨询，制定综合性护理干预措施，包括个体化凝血因子注射培训指导、血友病知识讲座、血友病患儿家庭联谊会、家庭治疗护理行为随访等，并于干预前后对儿童血友病家庭治疗和护理行为进行测评比较，判断干预效果。结果干预后血友病患儿家庭的治疗和护理行为的测评显示，22个具体行为中，19个行为明显改善，干预前后比较，差异有统计学意义（χ2值分别为59．88，36．47，96．30，13．57，34．67，55．06，55．06，21．85，22．69，45．69，39．33，68．25，11．99，35．39，35．39，17．24，81．51，85．75，13．57；P〈0．01）；“准确记录每一次出血及处置经过”由干预前的2例（3．85％）上升至干预后的48例（92．31％），“按月向血友病护士报告出血及治疗护理信息”由干预前的5例（20％）上升至干预后的52例（100％），干预前后比较，差异均有统计学意义（χ2值分别为81．51，85．75；P〈0．01）。结论综合性护理干预措施可以在改善儿童血友病家庭治疗和护理的行为的同时实现血友病诊疗中心对血友病患儿病例信息的有效管理，适合在我国地方血友病诊疗中心开展。

Application of the intervention mode of family treatment and nursing behaviors on children hemophilia

Objective To explore the applicable nursing intervention mode of family treatment and nursing for children with hemophilia which was appropriate for local hemophilia treatment center （HTC）. Methods The nursing intervention group,which consisting of nurses, hemophilia patients aged 2 - 18 and their parents, discussed and summarized the problems in family treatment and nursing for children with hemophilia, through literature review and expert consultation, developed comprehensive nursing intervention measures, which including individualized coagulation factors injection training, hemophilia classes, children hemophilia families sodality and follow-up visiting of the family treatment and nursing behaviors. The effect of nursing intervention was judged through measuring and comparing the family treatment and nursing behaviors. Results After intervention, among 22 items of family treatment and nursing behaviors, 19 items were significantly improved than that of no intervention （ χ2 = 59.88,36.47,96.30,13.57,34.67,55.06,55.06,21.85,22.69,45.69,39.33, 68.25,11.99,35.39,35.39,17.24,81.51,85.75,13.57, respectively; P 〈 0.01 ）. Before intervention, the incidence of ＂correctly record every bleeding and treatment＂ among the patients was 2 cases （3.85%）, while after intervention,that was 48 cases （92.31%）, and the incidence of ＂monthly report the bleeding and therapy nursing information to nurses＂ was raised from 5 cases （20%） to 52 cases （ 100% ） after intervention, and the difference was statistically significant （ χ2 = 81.51,85.75, respectively; P 〈 0.01 ）. Conclusions Comprehensive nursing intervention measures can improve the families＇ treatment and nursing behaviors of children with hemophilia and achieve the effective management of patients＇ information at the sam time, which is applicable for local hemophilia treatment center.