Chahal Nita, Jelen Ahlexxi, Rush Janet, Manlhiot Cedric, Boydell Katherine M, Sananes Renee, McCrindle Brian W
J Pediatr Health Care. 2017 Jul-Aug;31(4):459-469. doi: 10.1016/j.pedhc.2016.11.007. Epub 2016 Dec 24.
For those living with Kawasaki disease and coronary artery aneurysms, little is known about the psychosocial burden faced by parents and their children.
Exploratory, descriptive, mixed-methods design examining survey and interview data about health-related uncertainty, intrusiveness, and self-efficacy.
Parents' uncertainty was associated with missed diagnosis, higher income, and maternal education. Higher uncertainty scores among children were associated with absence of chest pain and lower number of echocardiograms. High intrusiveness scores among parents were associated with previous cardiac catheterization, use of anticoagulants, lower parent education and income, and missed diagnosis. High intrusiveness scores among children were associated with high paternal education. Children's total self-efficacy scores increased with chest pain and larger aneurysm size. Qualitative analysis showed two central themes: Psychosocial Struggle and Cautious Optimism.
Negative illness impact is associated with a more intense medical experience and psychosocial limitations. Timely assessment and support are warranted to meet parents' and children's needs.
对于患有川崎病和冠状动脉瘤的患者，关于其父母及其子女所面临的心理社会负担，我们知之甚少。
采用探索性、描述性混合方法设计，对有关健康相关不确定性、侵扰性和自我效能感的调查及访谈数据进行研究。
父母的不确定性与漏诊、较高收入和母亲受教育程度有关。儿童较高的不确定性得分与无胸痛症状及较少的超声心动图检查次数有关。父母较高的侵扰性得分与既往心脏导管插入术、使用抗凝剂、父母较低的教育程度和收入以及漏诊有关。儿童较高的侵扰性得分与父亲较高的教育程度有关。儿童的总体自我效能感得分随着胸痛症状和较大的动脉瘤尺寸而增加。定性分析显示了两个核心主题：心理社会挣扎和谨慎乐观。
负面的疾病影响与更强烈的医疗经历和心理社会限制有关。需要进行及时评估并提供支持，以满足父母和儿童的需求。
