孤独症谱系障碍RUBI-PT方案的改编及适应性调查

doi:10.3969/j.issn.1674-8115.2024.03.001

上海交通大学学报（医学版） ›› 2024, Vol. 44 ›› Issue (3): 291-300.doi: 10.3969/j.issn.1674-8115.2024.03.001

• 创新团队成果专栏 •

孤独症谱系障碍RUBI-PT方案的改编及适应性调查

吕娜()(), 章玲丽, 任芳, 杨涵舒, 李斐(), 徐明玉()

上海交通大学医学院附属新华医院发育行为儿童保健科，教育部-上海市环境与儿童健康重点实验室，上海 200092

收稿日期:2023-07-09 接受日期:2024-01-12 出版日期:2024-03-28 发布日期:2024-04-29
通讯作者: 李斐,徐明玉 E-mail:lyuna@foxmail.com;feili@shsmu.edu.cn;ningxiner_2003@aliyun.com
作者简介:吕娜（1997—），女，初级心理治疗师，硕士；电子信箱：lyuna@foxmail.com。
基金资助:
上海交通大学医学院高水平地方高校创新团队(SHSMU-ZDCX-2021-1100);国家自然科学基金(82125032);上海市卫生健康委员会项目(2020CXJQ01)

Adaptation and adaptability survey of the RUBI-PT program for autism spectrum disorders

LÜ Na()(), ZHANG Lingli, REN Fang, YANG Hanshu, LI Fei(), XU Mingyu()

Department of Developmental Behavioral Child Health, Xinhua Hospital, Shanghai Jiao Tong University School of Medicine, MOE-Shanghai Key Laboratory of Children′s Environmental Health, Shanghai 200092, China

Received:2023-07-09 Accepted:2024-01-12 Online:2024-03-28 Published:2024-04-29
Contact: LI Fei,XU Mingyu E-mail:lyuna@foxmail.com;feili@shsmu.edu.cn;ningxiner_2003@aliyun.com
Supported by:
Innovative Research Team of High-level Local Universities in Shanghai(SHSMU-ZDCX-2021-1100);National Natural Science Foundation of China(82125032);Project of Shanghai Municipal Health Commission(2020CXJQ01)

摘要/Abstract

摘要：

目的·探究“行为干预研究单位孤独症网络家长培训”［the Research Units in Behavioral Intervention（RUBI）Autism Network Parent Training，RUBI-PT］方案的中国本土化改编并对其适应性进行调查。方法·按照文化改编的4个步骤对RUBI-PT方案进行改编，包括信息收集、初步改编设计、初步改编测试、进一步调整。信息收集阶段邀请了6位儿科专家和2位心理治疗师进行6次焦点小组访谈，并根据专家意见从语言、治疗形式、治疗设置等方面对RUBI-PT方案进行初步改编；初步改编测试阶段招募了16位孤独症谱系障碍（autism spectrum disorder，ASD）患儿的家长，分2批参加线上RUBI-PT，结束后收集项目反馈问卷并行适应性调查分析，最后根据测试结果进行方案的进一步调整。结果·RUBI-PT的初步改编方案由个体培训调整为团体培训，包含8次核心技能课程，采用线上会议形式实施。初步测试结果显示，家长对于上课进度、上课过程、课后作业完成情况、作业点评情况的满意度分别为90%、80%、100%和100%；课程难度方面，第7次课（功能性沟通训练）和第8次课（教授技能）的难度最大。依据上述调查结果和专家小组意见完成进一步调整，最终形成本土化RUBI-PT的改编方案。结论·经过改编和适应性调查，形成了适用于中国ASD儿童家庭的家长行为训练策略即RUBI-PT。

关键词: 孤独症谱系障碍, 家长行为训练, 行为干预研究单位孤独症网络家长培训, 文化改编, 适应性调查

Abstract:

Objective ·To explore the adaptation and adaptability of RUBI-PT (the Research Units in Behavioral Intervention Autism Network Parent Training) program in China. Methods ·According to the four steps of cultural adaptation, the RUBI-PT program was adapted, including information collection, preliminary adaptation design, preliminary adaptation test and further adjustment. In the information collection phase, six pediatricians and two psychotherapists were invited to conduct six focus group interviews, and according to the expert opinions, the RUBI-PT program was preliminarily adapted from the aspects of language, treatment format and treatment setting. In the preliminary adaptation test phase, 16 parents of autism spectrum disorder (ASD) children were recruited and divided into two batches to participate in the online RUBI-PT. After the treatment, the project feedback questionnaires were collected, and the adaptability was investigated and analyzed. Finally, the scheme was further adjusted according to the test results. Results ·The preliminary adaptation program of RUBI-PT was adjusted from individual training to group training, including eight core skills sessions, which were implemented in the form of online meetings. The preliminary test results showed that parents′ satisfaction with lesson progress, lesson process, completion of homework and comments to homework were 90%, 80%, 100% and 100%, respectively; in terms of the course difficulty, parents reported that the 7th session (functional communication training) and the 8th session (teaching skills) were the most difficult. Based on the above survey results and the opinions of the expert group, further adjustments were completed, and an adaptation program for localized RUBI-PT was ultimately formed. Conclusion ·After adaptation and adaptability investigation, the RUBI-PT, which is suitable for Chinese families with ASD children to conduct behavioral parent training, has been formed.

Key words: autism spectrum disorder (ASD), behavioral parent training (BPT), the Research Units in Behavioral Intervention Autism Network Parent Training (RUBI-PT), cultural adaptation, adaptive survey

中图分类号:

R749.94

吕娜, 章玲丽, 任芳, 杨涵舒, 李斐, 徐明玉. 孤独症谱系障碍RUBI-PT方案的改编及适应性调查[J]. 上海交通大学学报（医学版）, 2024, 44(3): 291-300.

LÜ Na, ZHANG Lingli, REN Fang, YANG Hanshu, LI Fei, XU Mingyu. Adaptation and adaptability survey of the RUBI-PT program for autism spectrum disorders[J]. Journal of Shanghai Jiao Tong University (Medical Science), 2024, 44(3): 291-300.

图/表 5

参考文献 25

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Item	Demographic information
ASD child
Age/year	3.94 ± 1.53
Gender/n(%)
Male	13 (81.25)
Female	3 (18.75)
Only child or not/n(%)
Yes	7 (43.75)
No	9 (56.25)
Primary caregiver/n(%)
Mother	9 (56.25)
Father	2 (12.50)
Both mother and father	4 (25.00)
Grandmother	1 (6.25)
Parent
Age of mother/year	35.53 ± 4.22
Age of father/year	34.69 ± 4.50
Daily interaction time with the child/n(%)
30 min‒1 h	3 (18.75)
1‒2 h	7 (43.75)
More than 2 h	6 (37.50)
Mother′s education level/n(%)
Bachelor′s degree and above	6 (37.50)
Associate′s degree	5 (31.25)
High school and below	5 (31.25)
Father′s education level/n(%)
Bachelor′s degree and above	7 (43.75)
Associate′s degree	2 (12.50)
High school and below	7 (43.75)
Total household income last year/n(%)
Below RMB 100 000 yuan	4 (25.00)
RMB 100 000‒200 000 yuan	5 (31.25)
Above RMB 200 000 yuan	7 (43.75)

Item	Demographic information
ASD child
Age/year	3.94 ± 1.53
Gender/n(%)
Male	13 (81.25)
Female	3 (18.75)
Only child or not/n(%)
Yes	7 (43.75)
No	9 (56.25)
Primary caregiver/n(%)
Mother	9 (56.25)
Father	2 (12.50)
Both mother and father	4 (25.00)
Grandmother	1 (6.25)
Parent
Age of mother/year	35.53 ± 4.22
Age of father/year	34.69 ± 4.50
Daily interaction time with the child/n(%)
30 min‒1 h	3 (18.75)
1‒2 h	7 (43.75)
More than 2 h	6 (37.50)
Mother′s education level/n(%)
Bachelor′s degree and above	6 (37.50)
Associate′s degree	5 (31.25)
High school and below	5 (31.25)
Father′s education level/n(%)
Bachelor′s degree and above	7 (43.75)
Associate′s degree	2 (12.50)
High school and below	7 (43.75)
Total household income last year/n(%)
Below RMB 100 000 yuan	4 (25.00)
RMB 100 000‒200 000 yuan	5 (31.25)
Above RMB 200 000 yuan	7 (43.75)

Evaluation dimension	Option (single choice)	n (%)
Lesson progress	1. The lesson progress is well grasped. Learners can follow the rhythm of the therapist to complete learning	9 (90)
	2. The lesson progress is a little fast. Learning is a little difficult for learners	1 (10)
	3. The lesson progress is slow and could be appropriately accelerated	0 (0)
	4. The progress of some lessons is a bit fast or slow	0 (0)
Lesson process	1. Well-prepared lessons with clear presentations and objectives	8 (80)
	2. Rich examples, assisting in understanding intervention techniques	1 (10)
	3. High level of participation and full interaction	1 (10)
	4. Few examples, difficult to understand	0 (0)
	5. Few interactions, not much participation	0 (0)
Completion of homework	1. Easy to complete, helping learners to learn intervention skills better	10 (100)
Completion of homework	2. Difficult to complete, difficult to achieve the expected goals	0 (0)
Comments to homework	1. The comments are timely and helpful in answering questions and solving problems	10 (100)
	2. The comments are timely, but the comments do not help solving the problems that arise in the assignment	0 (0)
	3. The comments are not timely enough, but the contents of the comments help answering questions and solving problems	0 (0)
	4. The comments are not timely enough, but sloppy and perfunctory, and do not help solving problems that arise in the assignment	0 (0)

Evaluation dimension	Option (single choice)	n (%)
Lesson progress	1. The lesson progress is well grasped. Learners can follow the rhythm of the therapist to complete learning	9 (90)
	2. The lesson progress is a little fast. Learning is a little difficult for learners	1 (10)
	3. The lesson progress is slow and could be appropriately accelerated	0 (0)
	4. The progress of some lessons is a bit fast or slow	0 (0)
Lesson process	1. Well-prepared lessons with clear presentations and objectives	8 (80)
	2. Rich examples, assisting in understanding intervention techniques	1 (10)
	3. High level of participation and full interaction	1 (10)
	4. Few examples, difficult to understand	0 (0)
	5. Few interactions, not much participation	0 (0)
Completion of homework	1. Easy to complete, helping learners to learn intervention skills better	10 (100)
Completion of homework	2. Difficult to complete, difficult to achieve the expected goals	0 (0)
Comments to homework	1. The comments are timely and helpful in answering questions and solving problems	10 (100)
	2. The comments are timely, but the comments do not help solving the problems that arise in the assignment	0 (0)
	3. The comments are not timely enough, but the contents of the comments help answering questions and solving problems	0 (0)
	4. The comments are not timely enough, but sloppy and perfunctory, and do not help solving problems that arise in the assignment	0 (0)

Lesson	Difficulty/n(%)
Lesson	The easiest lesson	The hardest lesson
Course introduction and behavioral principles	7 (70)	1 (10)
Prevention strategies	8 (80)	1 (10)
Daily schedules	8 (80)	2 (20)
Reinforcement	6 (60)	3 (30)
Planned ignoring	7 (70)	2 (20)
Compliance training	10 (100)	1 (10)
Functional communication training	4 (40)	6 (60)
Teaching skills	3 (30)	8 (80)

孤独症谱系障碍RUBI-PT方案的改编及适应性调查

Adaptation and adaptability survey of the RUBI-PT program for autism spectrum disorders

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