Akard Terrah Foster, Dietrich Mary S, Friedman Debra L, Hinds Pamela S, Given Barbara, Wray Sarah, Gilmer Mary Jo
Vanderbilt University School of Nursing, Nashville, Tennessee.
Pediatr Blood Cancer. 2015 Apr;62(4):658-65. doi: 10.1002/pbc.25337. Epub 2015 Jan 13.
This study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life.
Children (N = 28) ages 7-17 years completed a baseline QOL questionnaire (PedsQL) at T1. After baseline, the intervention group (n = 15) completed a randomized intervention that guided children to answer questions about legacy-making and create a digital story about themselves. A final copy of the digital story was provided to the families. A control group (n = 13) received customary care. Children repeated the questionnaire at T2. Parents (N = 22) of children who completed the intervention completed follow-up survey questions regarding intervention effects.
Feasibility was strong (78% participation; 1 attrition). While differences between the groups in physical, emotional, social, or school functioning change was not statistically significant, the intervention group showed slightly better emotional and school functioning compared to controls. Parents reported that their child's digital story provided emotional comfort to them (n = 11, 46%), facilitated communication between parents and children (n = 9, 38%), and was a coping strategy for them (n = 4, 17%). Parents reported that the intervention helped children express their feelings (n = 19, 79%), cope (n = 6, 27%), and feel better emotionally (n = 5, 23%).
Our intervention is feasible for children with cancer, is developmentally appropriate for children 7-17 years of age, and demonstrates promise to improve quality of life outcomes for children with cancer and their parents.
本研究探讨了为癌症患儿开展遗产留存干预措施的可行性及其对生活质量相关结果的初步影响。
7至17岁的儿童（N = 28）在T1时完成了一份基线生活质量问卷（儿童生活质量量表）。基线之后，干预组（n = 15）完成了一项随机干预，引导儿童回答有关遗产留存的问题，并创作一个关于自己的数字故事。数字故事的最终版本提供给了家庭。对照组（n = 13）接受常规护理。儿童在T2时再次填写问卷。完成干预的儿童的家长（N = 22）完成了关于干预效果的随访调查问题。
可行性很强（参与率78%；1人退出）。虽然两组在身体、情感、社交或学校功能变化方面的差异无统计学意义，但与对照组相比，干预组在情感和学校功能方面表现略好。家长报告称，孩子的数字故事给他们带来了情感上的慰藉（n = 11，46%），促进了亲子沟通（n = 9，38%），并且是他们的一种应对策略（n = 4，17%）。家长报告称，干预帮助孩子表达了自己的感受（n = 19，79%），学会了应对（n = 6，27%），并且在情感上感觉更好（n = 5，23%）。
我们的干预措施对癌症患儿是可行的，在发育上适合7至17岁的儿童，并且有望改善癌症患儿及其家长的生活质量结果。
