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 •
吕娜(
)(
), 章玲丽, 任芳, 杨涵舒, 李斐(), 徐明玉()
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:
LÜ Na()(), ZHANG Lingli, REN Fang, YANG Hanshu, LI Fei(), XU Mingyu()
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: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。
中图分类号:
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.
| Adaptation content | Original version | Preliminary adapted version |
|---|---|---|
| Language | English | Chinese |
| Treatment format | Individual therapy | Group therapy |
| Treatment setting | 11 sessions*: ①Behavioral principles ②Prevention strategies ③Daily schedules ④Reinforcement 1 ⑤Reinforcement 2 ⑥Planned ignoring ⑦Compliance training ⑧Functional communication training ⑨Teaching skills 1 ⑩Teaching skills 2 ⑪Generalization and maintenance | 8 sessions: ①Course introduction and behavioral principles ②Prevention strategies ③Daily schedules ④Reinforcement ⑤Planned ignoring ⑥Compliance training ⑦Functional communication training ⑧Teaching skills |
表1 初步改编的RUBI-PT方案与原方案的差异
Tab 1 Differences between the preliminary adaptation of the RUBI-PT program and the original version
| Adaptation content | Original version | Preliminary adapted version |
|---|---|---|
| Language | English | Chinese |
| Treatment format | Individual therapy | Group therapy |
| Treatment setting | 11 sessions*: ①Behavioral principles ②Prevention strategies ③Daily schedules ④Reinforcement 1 ⑤Reinforcement 2 ⑥Planned ignoring ⑦Compliance training ⑧Functional communication training ⑨Teaching skills 1 ⑩Teaching skills 2 ⑪Generalization and maintenance | 8 sessions: ①Course introduction and behavioral principles ②Prevention strategies ③Daily schedules ④Reinforcement ⑤Planned ignoring ⑥Compliance training ⑦Functional communication training ⑧Teaching skills |
| 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) |
表2 ASD患儿家长的人口学信息（n=16）
Tab 2 Demographic information of parents of children with ASD （n=16）
| 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) |
| 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) |
表3 上课进度、上课过程、课后作业完成情况、作业点评情况的问卷结果统计（n=10）
Tab 3 Statistics of questionnaire results on lesson progress， lesson process， completion of homework and comments to homework （n=10）
| 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) |
| 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(%) | |
|---|---|---|
| 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) |
表4 总体课程难易程度评价
Tab 4 Evaluation of overall course difficulty level
| Lesson | Difficulty/n(%) | |
|---|---|---|
| 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) |
| Session | Theme | Main content |
|---|---|---|
| 1 | 课程介绍和行为原则 (Course introduction and behavioral principles) | 介绍总体治疗目标、行为功能的概念、行为的前因后果 (Introducing overall treatment goals, the concept of behavioral function, the causes and consequences of behavior) |
| 2 | 预防策略 (Prevention strategies) | 讨论行为问题的前因并制定预防策略 (Discussing antecedents to behavior problems and developing preventive strategies) |
| 3 | 每日时间表 (Daily schedules) | 制定每日时间表，使用视觉时间表以减少行为问题 (Developing a daily schedule, and using visual schedules to reduce behavioral problems) |
| 4 | 强化 (Reinforcement) | 引入强化物的概念，以促进合规性、增加期望行为，并教授新的行为 (Introducing the concept of reinforcer to promote compliance, strengthen desired behaviors, and teach new behaviors) |
| 5 | 计划忽视 (Planned ignoring) | 探索系统性地使用消退（通过有计划的忽视）来减少行为问题 [Exploring systematic use of extinction (via planned ignoring) to reduce behavioral problems] |
| 6 | 合规性训练 (Compliance training) | 分析不服从指令的原因、教授指令训练的步骤和要点，促进孩子的合规性 (Analyzing the causes of noncompliant behaviors, and teaching the steps and key points of command training to enhance children′s compliance) |
| 7 | 功能性沟通训练 (Functional communication training) | 通过系统性强化策略，教授替代性沟通技能，以取代问题行为 (Through systematic reinforcement, teaching alternative communicative skills to replace problematic behaviors) |
| 8 | 教授技能 (Teaching skills) | 使用任务分析和链式教学法，以促进新的适应性技能。在教授技能的同时，教授各种提示程序 (Using task analysis and chaining to promote new adaptive skills. Teaching various prompting procedures as well as skills) |
表5 改编后的RUBI-PT
Tab 5 RUB-PT after adaptation
| Session | Theme | Main content |
|---|---|---|
| 1 | 课程介绍和行为原则 (Course introduction and behavioral principles) | 介绍总体治疗目标、行为功能的概念、行为的前因后果 (Introducing overall treatment goals, the concept of behavioral function, the causes and consequences of behavior) |
| 2 | 预防策略 (Prevention strategies) | 讨论行为问题的前因并制定预防策略 (Discussing antecedents to behavior problems and developing preventive strategies) |
| 3 | 每日时间表 (Daily schedules) | 制定每日时间表，使用视觉时间表以减少行为问题 (Developing a daily schedule, and using visual schedules to reduce behavioral problems) |
| 4 | 强化 (Reinforcement) | 引入强化物的概念，以促进合规性、增加期望行为，并教授新的行为 (Introducing the concept of reinforcer to promote compliance, strengthen desired behaviors, and teach new behaviors) |
| 5 | 计划忽视 (Planned ignoring) | 探索系统性地使用消退（通过有计划的忽视）来减少行为问题 [Exploring systematic use of extinction (via planned ignoring) to reduce behavioral problems] |
| 6 | 合规性训练 (Compliance training) | 分析不服从指令的原因、教授指令训练的步骤和要点，促进孩子的合规性 (Analyzing the causes of noncompliant behaviors, and teaching the steps and key points of command training to enhance children′s compliance) |
| 7 | 功能性沟通训练 (Functional communication training) | 通过系统性强化策略，教授替代性沟通技能，以取代问题行为 (Through systematic reinforcement, teaching alternative communicative skills to replace problematic behaviors) |
| 8 | 教授技能 (Teaching skills) | 使用任务分析和链式教学法，以促进新的适应性技能。在教授技能的同时，教授各种提示程序 (Using task analysis and chaining to promote new adaptive skills. Teaching various prompting procedures as well as skills) |
| 1 | American Psychiatric Association. Diagnostic and statistical manual of mental disorders[M]. 5th ed. Washington, DC: American Psychiatric Association, 2013. |
| 2 | SIMÓ-PINATELLA D, MUMBARDÓ-ADAM C, ALOMAR-KURZ E, et al. Prevalence of challenging behaviors exhibited by children with disabilities: mapping the literature[J]. J Behav Educ, 2019, 28(3): 323-343. |
| 3 | BROWN C E, BORDUIN C M, DOPP A R, et al. The social ecology of aggression in youths with autism spectrum disorder[J]. Autism Res, 2019, 12(11): 1636-1647. |
| 4 | HOSSAIN M M, KHAN N, SULTANA A, et al. Prevalence of comorbid psychiatric disorders among people with autism spectrum disorder: an umbrella review of systematic reviews and meta-analyses[J]. Psychiatry Res, 2020, 287: 112922. |
| 5 | STORCH E A, ARNOLD E B, JONES A M, et al. The role of co-occurring disruptive behavior in the clinical presentation of children and adolescents with anxiety in the context of autism spectrum disorders[J]. Child Psychiatry Hum Dev, 2012, 43(5): 734-746. |
| 6 | ZAIDMAN-ZAIT A, MIRENDA P, DUKU E, et al. Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder[J]. Autism, 2017, 21(2): 155-166. |
| 7 | YORKE I, WHITE P, WESTON A, et al. The association between emotional and behavioral problems in children with autism spectrum disorder and psychological distress in their parents: a systematic review and meta-analysis[J]. J Autism Dev Disord, 2018, 48(10): 3393-3415. |
| 8 | NEVILL R E, ISTVAN E M, HAVERCAMP S M. The effects of aggression subtypes on burnout and caregiver instability in direct support professionals[J]. J Posit Behav Interv, 2022, 24(2): 99-109. |
| 9 | BEARSS K, JOHNSON C, SMITH T, et al. Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial[J]. JAMA, 2015, 313(15): 1524-1533. |
| 10 | SCHROTT B, KASPERZACK D, WEBER L, et al. Effectiveness of the stepping stones triple P group parenting program as an additional intervention in the treatment of autism spectrum disorders: effects on parenting variables[J]. J Autism Dev Disord, 2019, 49(3): 913-923. |
| 11 | POSTORINO V, SHARP W G, MCCRACKEN C E, et al. A systematic review and meta-analysis of parent training for disruptive behavior in children with autism spectrum disorder[J]. Clin Child Fam Psychol Rev, 2017, 20(4): 391-402. |
| 12 | BEARSS K, JOHNSON C, HANDEN B, et al. A pilot study of parent training in young children with autism spectrum disorders and disruptive behavior[J]. J Autism Dev Disord, 2013, 43(4): 829-840. |
| 13 | SCAHILL L, BEARSS K, LECAVALIER L, et al. Effect of parent training on adaptive behavior in children with autism spectrum disorder and disruptive behavior: results of a randomized trial[J]. J Am Acad Child Adolesc Psychiatry, 2016, 55(7): 602-609.e3. |
| 14 | IADAROLA S, LEVATO L, HARRISON B, et al. Teaching parents behavioral strategies for autism spectrum disorder (ASD): effects on stress, strain, and competence[J]. J Autism Dev Disord, 2018, 48(4): 1031-1040. |
| 15 | JOHNSON C R, TURNER K S, FOLDES E, et al. Behavioral parent training to address sleep disturbances in young children with autism spectrum disorder: a pilot trial[J]. Sleep Med, 2013, 14(10): 995-1004. |
| 16 | JOHNSON C R, BROWN K, HYMAN S L, et al. Parent training for feeding problems in children with autism spectrum disorder: initial randomized trial[J]. J Pediatr Psychol, 2019, 44(2): 164-175. |
| 17 | WEI Q, MACHALICEK W, ZHU J L. Treatment acceptability for interventions addressing challenging behavior among Chinese caregivers of children with autism spectrum disorder[J]. J Autism Dev Disord, 2023, 53(4): 1483-1494. |
| 18 | BARRERA M, CASTRO F G. A heuristic framework for the cultural adaptation of interventions[J]. Clin Psychol Sci Pract, 2006, 13(4): 311-316. |
| 19 | CASTRO F G, BARRERA M Jr, HOLLERAN STEIKER L K. Issues and challenges in the design of culturally adapted evidence-based interventions[J]. Annu Rev Clin Psychol, 2010, 6: 213-239. |
| 20 | 徐秀, 邹小兵, 柯晓燕, 等. 孤独症谱系障碍婴幼儿家庭实施早期干预专家共识[J]. 中国循证儿科杂志, 2021, 16(5): 327-332. |
| XU X, ZOU X B, KE X Y, et al. Expert consensus on the implementation of early intervention in families of infants and toddlers with autism spectrum disorders[J]. Chinese Journal of Evidence Based Pediatrics, 2021, 16(5): 327-332. | |
| 21 | 张晓艺, 郭启华. 美国自闭症儿童家长培训的实施程序及启示[J]. 绥化学院学报, 2022, 42(4): 86-89. |
| ZHANG X Y, GUO Q H. The implementation procedure and enlightenment of parent training for autistic children in the United States[J]. Journal of Suihua University, 2022, 42(4): 86-89. | |
| 22 | MARTIN R J, CROWLEY-ZALAKET J, GOULD K, et al. Behavioral parent training via telehealth for autistic children: further exploration of feasibility during the COVID-19 pandemic[J]. Adv Neurodev Disord, 2023: 1-14. |
| 23 | GORDON-LIPKIN E, FOSTER J, PEACOCK G. Whittling down the wait time: exploring models to minimize the delay from initial concern to diagnosis and treatment of autism spectrum disorder[J]. Pediatr Clin North Am, 2016, 63(5): 851-859. |
| 24 | GROSS D, BELCHER H M E, BUDHATHOKI C, et al. Reducing preschool behavior problems in an urban mental health clinic: a pragmatic, non-inferiority trial[J]. J Am Acad Child Adolesc Psychiatry, 2019, 58(6): 572-581.e1. |
| 25 | BURRELL T L, POSTORINO V, SCAHILL L, et al. Feasibility of group parent training for children with autism spectrum disorder and disruptive behavior: a demonstration pilot[J]. J Autism Dev Disord, 2020, 50(11): 3883-3894. |
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