Tieffenberg J A, Wood E I, Alonso A, Tossutti M S, Vicente M F
Research Division, Self-Help Training Project of ACINDES, Association for Health Research and Development, Buenos Aires, Argentina.
J Urban Health. 2000 Jun;77(2):280-97. doi: 10.1007/BF02390539.
A randomized field trial of a child-centered model of training for self-management of chronic illnesses was conducted of 355 Spanish-speaking school-aged children, between 6 and 15 years old, with moderate to severe asthma and epilepsy, in Buenos Aires, Argentina. The model, based on play techniques, consists of five weekly meetings of 8-10 families, with children's and parents' groups held simultaneously, coordinated by specially trained teachers and outside the hospital environment. Children are trained to assume a leading role in the management of their health; parents learn to be facilitators; and physicians provide guidance, acting as counselors. Group activities include games, drawings, stories, videos, and role-playing. Children and parents were interviewed at home before the program and 6 and 12 months after the program, and medical and school records were monitored for emergency and routine visits, hospitalizations, and school absenteeism. In asthma and epilepsy, children in the experiment showed significant improvements in knowledge, beliefs, attitudes, and behaviors compared to controls (probability of experimental gain over controls = .69 for epilepsy and .56 for asthma, with sigma2 = .007 and .016, respectively). Parent participants in the experiment had improved knowledge of asthma (39% before vs. 58% after) and epilepsy (22% before vs. 56% after), with a probability of gain = .62 (sigma2 = .0026) with respect to the control group. Similar positive outcomes were found in fears of child death (experimental 39% before vs. 4% after for asthma, 69% before vs. 30% after for epilepsy), as well as in disruption of family life and patient-physician relationship, while controls showed no change. Regarding clinical variables, for both asthma and epilepsy, children in the experimental group had significantly fewer crises than the controls after the groups (P = .036 and P = .026). Visits to physicians showed a significant decrease for those with asthma (P = .048), and emergency visits decreased for those with epilepsy (P = .046). An 18-item Children Health Locus of Control Scale (CHLCS) showed a significant increase in internality in experimental group children with asthma and epilepsy (P < .01), while controls did not change or performed worse 12 months after the program. School absenteeism was reduced significantly for those with asthma and epilepsy (for the group with asthma, fall/winter P = .006, and spring P = .029; for the group with epilepsy, P = .011).
The program was successful in improving the health, activity, and quality of life of children with asthma and epilepsy. The data suggested that an autonomous (Piagetian) model of training is a key to this success, reinforcing children's autonomous decision making.
在阿根廷布宜诺斯艾利斯,针对355名6至15岁、患有中度至重度哮喘和癫痫的讲西班牙语学龄儿童,开展了一项以儿童为中心的慢性病自我管理培训模式的随机现场试验。该模式基于游戏技巧,包括8 - 10个家庭每周进行一次共五次的会面,同时设有儿童组和家长组,由经过专门培训的教师协调,且在医院环境之外进行。儿童接受培训以在自身健康管理中发挥主导作用;家长学习成为促进者;医生提供指导,充当顾问。小组活动包括游戏、绘画、故事、视频和角色扮演。在项目开始前、项目进行6个月和12个月后,对儿童和家长进行了家访,并监测了医疗和学校记录中的急诊和常规就诊、住院情况以及学校缺勤情况。在哮喘和癫痫方面,与对照组相比,试验组儿童在知识、信念、态度和行为方面有显著改善(癫痫试验组比对照组改善的概率为0.69,哮喘为0.56,分别对应σ² = 0.007和0.016)。试验组的家长参与者对哮喘(之前39% vs. 之后58%)和癫痫(之前22% vs. 之后56%)的知识有所提高,与对照组相比改善概率为0.62(σ² = 0.0026)。在对儿童死亡的恐惧方面(哮喘试验组之前39% vs. 之后4%,癫痫之前69% vs. 之后30%)以及家庭生活和医患关系的干扰方面也发现了类似的积极结果,而对照组则没有变化。关于临床变量,对于哮喘和癫痫,试验组儿童在分组后危机次数均显著少于对照组(P = 0.036和P = 0.026)。哮喘患者看医生的次数显著减少(P = 0.048),癫痫患者的急诊次数减少(P = 0.046)。一个包含18个项目的儿童健康控制源量表(CHLCS)显示,哮喘和癫痫试验组儿童的内控性显著增加(P < 0.01),而对照组在项目12个月后没有变化或表现更差。哮喘和癫痫患者的学校缺勤率显著降低(哮喘组,秋冬P = 0.006,春季P = 0.029;癫痫组,P = 0.011)。
该项目成功改善了哮喘和癫痫儿童的健康、活动及生活质量。数据表明,自主(皮亚杰式)培训模式是取得这一成功的关键,强化了儿童的自主决策能力。