Chinese caregivers’ attitudes towards ABA-based interventions for their autistic children: a qualitative exploration

References

• Acar, S., C.-I. Chen, and H. Xie. 2021. “Parental Involvement in Developmental Disabilities Across Three Cultures: A Systematic Review.” Research in Developmental Disabilities 110: 103861. https://doi.org/10.1016/j.ridd.2021.103861.
   PubMed Web of Science ®Google Scholar
• Adeoye‐Olatunde, O. A., and N. L. Olenik. 2021. “Research and Scholarly Methods: Semi‐Structured Interviews.” JACCP: Journal of the American College of Clinical Pharmacy 4 (10), 1358–1367. https://doi.org/10.1002/jac5.1441.
   Google Scholar
• APA (American Psychiatric Association). 1994. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington: American Psychiatric Association.
   Google Scholar
• APA (American Psychiatric Association). 2013. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington: American Psychiatric Association.
   Google Scholar
• Anderson-Chavarria, M. 2022. “The Autism Predicament: Models of Autism and Their Impact on Autistic Identity.” Disability & Society 37 (8), 1321–1341. https://doi.org/10.1080/09687599.2021.1877117.
   Web of Science ®Google Scholar
• Auert, E.-J., D. Trembath, J. Arciuli, and D. Thomas. 2012. “Parents’ Expectations, Awareness, and Experiences of Accessing Evidence-Based Speech-Language Pathology Services for Their Children With Autism.” International Journal of Speech-Language Pathology 14 (2): 109–118. https://doi.org/10.3109/17549507.2011.652673.
   PubMed Web of Science ®Google Scholar
• Ault, S., S. M. Breitenstein, S. Tucker, S. M. Havercamp, and J. L. Ford. 2021. “Caregivers of Children With Autism Spectrum Disorder in Rural Areas: A Literature Review of Mental Health and Social Support.” Journal of Pediatric Nursing 61: 229–239. https://doi.org/10.1016/j.pedn.2021.06.009.
   PubMed Web of Science ®Google Scholar
• BACB. 2022. “Region-Specific Certificant Data.” https://www.bacb.com/services/o.php?page=101134
   Google Scholar
• Baer, D. M., M. M. Wolf, and T. R. Risley. 1968. “Some Current Dimensions of Applied Behavior Analysis.” Journal of Applied Behavior Analysis 1 (1): 91–97. https://doi.org/10.1901/jaba.1968.1-91.
   PubMed Web of Science ®Google Scholar
• Bak, M. Y. S., A. M. Reilly, Y. Yang, H. Abas, Q. Pan, and M. L. Hugh. 2022. “Familiarity of Evidence Based Practices in Chinese Caregivers of Autistic Children.” International Journal of Developmental Disabilities 1–11. https://doi.org/10.1080/20473869.2022.2142374.
   PubMed Web of Science ®Google Scholar
• Benson, P., K. L. Karlof, and G. N. Siperstein. 2008. “Maternal Involvement in the Education of Young Children With Autism Spectrum Disorders.” Autism: The International Journal of Research and Practice 12 (1): 47–63. https://doi.org/10.1177/1362361307085269.
   PubMed Web of Science ®Google Scholar
• Braun, V., and V. Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2): 77–101. https://doi.org/10.1191/1478088706qp063oa.
   Google Scholar
• Braun, V., and V. Clarke. 2021. “One Size Fits All? What Counts as Quality Practice in (Reflexive) Thematic Analysis?” Qualitative Research in Psychology 18 (3): 328–352. https://doi.org/10.1080/14780887.2020.1769238.
   Web of Science ®Google Scholar
• Cassol, H., B. Pétré, S. Degrange, C. Martial, V. Charland-Verville, F. Lallier, I. Bragard, M. Guillaume, and S. Laureys. 2018. “Qualitative Thematic Analysis of the Phenomenology of Near-Death Experiences.” Plos ONE 13 (2): e0193001. https://doi.org/10.1371/journal.pone.0193001.
   PubMed Web of Science ®Google Scholar
• Chang, K., and C. M. Zaroff. 2017. “Applied Behavior Analysis in Autism Spectrum Disorders in China and Hong Kong.” Acta Psychopathologica 03 (05): 0–0. https://doi.org/10.4172/2469-6676.100124.
   Google Scholar
• Chen, X., J. Tong, B. Jiang, S. Ma, X. Wang, X. Sun, Y. Liu, D. Yan, and L. Wang. 2023. “Courtesy Stigma Among Primary Caregivers of Children With Autism Spectrum Disorder in Eastern China.” Frontiers in Psychiatry 14: 1236025. https://doi.org/10.3389/fpsyt.2023.1236025.
   PubMed Web of Science ®Google Scholar
• CDPF (China Disabled Persons’ Federation). 2021. “2020 Statistical Bulletin on the Development of Disabled Persons.” https://www.cdpf.org.cn/zwgk/zccx/tjgb/d4baf2be2102461e96259fdf13852841.htm
   Google Scholar
• Clark, E., and Z. Zhou. 2005. “Autism in China: From Acupuncture to Applied Behavior Analysis.” Psychology in the Schools 42 (3): 285–295. https://doi.org/10.1002/pits.20079.
   Web of Science ®Google Scholar
• Cooper, J. O., T. E. Heron, and W. L. Heward. 2019. Applied Behavior Analysis. 3rd ed. New Jersey: Pearson.
   Google Scholar
• Creswell, J., and C. Poth. 2017. Qualitative Inquiry and Research Design: Choosing Among Five Approaches. California: Sage.
   Google Scholar
• Cycyk, L. M., S. De Anda, H. Moore, and L. Huerta. 2021. “Cultural and Linguistic Adaptations of Early Language Interventions: Recommendations for Advancing Research and Practice.” American Journal of Speech-Language Pathology 30 (3): 1224–1246. https://doi.org/10.1044/2020_AJSLP-20-00101.
   PubMed Web of Science ®Google Scholar
• Dababnah, S., S. Ghosh, K. Campion, D. Hussein, and D. K. Downton. 2018. “Autism Interventions in India: A Systematic Review.” Review Journal of Autism and Developmental Disorders 5 (3): 260–267. https://doi.org/10.1007/s40489-018-0137-5.
   Web of Science ®Google Scholar
• Fong, E. H., S. Ficklin, and H. Y. Lee. 2017. “Increasing Cultural Understanding and Diversity in Applied Behavior Analysis.” Behavior Analysis: Research and Practice 17 (2): 103–113. https://doi.org/10.1037/bar0000076.
   Google Scholar
• Fu, W., Y. Xiao, C. Yin, and R. Xu. 2022. “Parents’ Perceptions of Autism and Their Challenges in China.” Advances in Developmental and Educational Psychology 4 (1): 130–142. https://doi.org/10.25082/ADEP.2022.01.001.
   Google Scholar
• Gitimoghaddam, M., N. Chichkine, L. McArthur, S. S. Sangha, and V. Symington. 2022. “Applied Behavior Analysis in Children and Youth With Autism Spectrum Disorders: A Scoping Review.” Perspectives on Behavior Science 45 (3): 521–557. https://doi.org/10.1007/s40614-022-00338-x.
   PubMed Web of Science ®Google Scholar
• Groenewald, T. 2004. “A Phenomenological Research Design Illustrated.” International Journal of Qualitative Methods 3 (1): 42–55. https://doi.org/10.1177/160940690400300104.
   Google Scholar
• Hernandez, C. D., N. F. W. Awodeha, and M. J. Cameron. 2023. “Culture and Language Inclusion in the Practice of Applied Behavior Analysis: Next Steps for Improving Outcomes for Autistic Clients.” Behavior Analysis in Practice 16 (4): 1280–1289. https://doi.org/10.1007/s40617-023-00791-3.
   PubMed Web of Science ®Google Scholar
• Hollway, W., and T. Jefferson. 2013. Doing Qualitative Research Differently: A Psychosocial Approach. 2nd ed. California: Sage.
   Google Scholar
• Horner, R. H., E. G. Carr, P. S. Strain, A. W. Todd, and H. K. Reed. 2002. “Problem Behavior Interventions for Young Children With Autism: A Research Synthesis.” Journal of Autism and Developmental Disorders 32 (5): 423–446. https://doi.org/10.1023/A:1020593922901.
   PubMed Web of Science ®Google Scholar
• Howlin, P., I. Magiati, and T. Charman. 2009. “Systematic Review of Early Intensive Behavioral Interventions for Children With Autism.” American Journal on Intellectual and Developmental Disabilities 114 (1): 23–41. https://doi.org/10.1352/2009.114:23-41.
   PubMedGoogle Scholar
• Huang, A. X., M. Jia, and J. J. Wheeler. 2013. “Children With Autism in the People’s Republic of China: Diagnosis, Legal Issues, and Educational Services.” Journal of Autism and Developmental Disorders 43 (9): 1991–2001. https://doi.org/10.1007/s10803-012-1722-6.
   PubMed Web of Science ®Google Scholar
• Huang, M., and Z. Zhou. 2016. “Perceived Self-Efficacy, Cultural Values, and Coping Styles Among Chinese Families of Children With Autism.” International Journal of School & Educational Psychology 4 (2): 61–70. https://doi.org/10.1080/21683603.2016.1130562.
   Google Scholar
• Huang, W., G. T. Lee, and X. Zhang. 2023. “Current Dimensions of Applied Behavior Analysis in Mainland China: A Review of 20 Years of Research.” Behavior Analysis in Practice 16 (2): 437–449. https://doi.org/10.1007/s40617-022-00751-3.
   PubMed Web of Science ®Google Scholar
• Jimenez-Gomez, C., and L. Beaulieu. 2022. “Cultural Responsiveness in Applied Behavior Analysis: Research and Practice.” Journal of Applied Behavior Analysis 55 (3): 650–673. https://doi.org/10.1002/jaba.920.
   PubMed Web of Science ®Google Scholar
• Johnston, J. M., J. E. Carr, and F. H. Mellichamp. 2017. “A History of the Professional Credentialing of Applied Behavior Analysts.” The Behavior Analyst 40 (2): 523–538. https://doi.org/10.1007/s40614-017-0106-9.
   PubMedGoogle Scholar
• Liao, Y., K. Dillenburger, and I. Buchanan. 2018. “Does Culture Matter in Aba-Based Autism Interventions? Parent and Professional Experiences in the UK and China.” European Journal of Behavior Analysis 19 (1): 11–29. https://doi.org/10.1080/15021149.2017.1399657.
   Google Scholar
• Liao, Y., K. Dillenburger, W. He, Y. Xu, and H. Cai. 2020. “A Systematic Review of Applied Behavior Analytic Interventions for Children With Autism in Mainland China.” Review Journal of Autism and Developmental Disorders 7 (4): 333–351. https://doi.org/10.1007/s40489-020-00196-w.
   Web of Science ®Google Scholar
• Liao, Y., K. Dillenburger, and X. Hu. 2022. “Behavior Analytic Interventions for Children With Autism: Policy and Practice in the United Kingdom and China.” Autism: The International Journal of Research and Practice 26 (1): 101–120. https://doi.org/10.1177/13623613211020976.
   PubMed Web of Science ®Google Scholar
• Liu, H., and Y. Li. 2007. “The Use of Applied Behavior Analysis in Rehabilitation Training for Children With Autism.” Chinese Journal of Special Education 81: 33–37.
   Google Scholar
• Liu, J., F. Yang, and M. Liu. 2022. “Screening and Services for Autism Among Children in China.” The Lancet Psychiatry 9 (12): e53. https://doi.org/10.1016/S2215-0366(22)00366-2.
   PubMed Web of Science ®Google Scholar
• Makrygianni, M. K., A. Gena, S. Katoudi, and P. Galanis. 2018. “The Effectiveness of Applied Behavior Analytic Interventions for Children With Autism Spectrum Disorder: A Meta-Analytic Study.” Research in Autism Spectrum Disorders 51: 18–31. https://doi.org/10.1016/j.rasd.2018.03.006.
   Web of Science ®Google Scholar
• Matson, J. L., and K. R. Smith. 2008. “Current Status of Intensive Behavioral Interventions for Young Children With Autism and PDD-NOS.” Research in Autism Spectrum Disorders 2 (1): 60–74. https://doi.org/10.1016/j.rasd.2007.03.003.
   Web of Science ®Google Scholar
• McCabe, H. 2013. “Bamboo Shoots After The Rain: Development and Challenges of Autism Intervention in China.” Autism: The International Journal of Research and Practice 17 (5): 510–526. https://doi.org/10.1177/1362361312436849.
   PubMed Web of Science ®Google Scholar
• McCabe, H., R. E. Barnes, and T. Jiang. 2023. “Ethical Issues in ABA-Based Service Provision for Autism in Limited-Resource Contexts: A Case Example of the People’s Republic of China.” Behavior Analysis in Practice 16 (1): 40–50. https://doi.org/10.1007/s40617-022-00692-x.
   PubMedGoogle Scholar
• McConkey, R. 2022. “Responding to Autism in Low and Middle Income Countries (LMIC): What to Do and What Not to Do.” Brain Sciences 12 (11): 1475. https://doi.org/10.3390/brainsci12111475.
   PubMed Web of Science ®Google Scholar
• McDonald, N., S. Schoenebeck, and A. Forte. 2019. “Reliability and Inter-Rater Reliability in Qualitative Research: Norms and Guidelines for CSCW and HCI Practice.” Proceedings of the ACM on Human-Computer Interaction 3 (CSCW): 1–23. https://doi.org/10.1145/3359174.
   PubMedGoogle Scholar
• McPhilemy, C., and K. Dillenburger. 2013. “Parents’ Experiences of Applied Behaviour Analysis (ABA)‐Based Interventions for Children Diagnosed With Autistic Spectrum Disorder.” British Journal of Special Education 40 (4): 154–161. https://doi.org/10.1111/1467-8578.12038.
   Google Scholar
• Miller, K. L., A. Re Cruz, and S. Ala’i-Rosales. 2019. “Inherent Tensions and Possibilities: Behavior Analysis and Cultural Responsiveness.” Behavior and Social Issues 28 (1): 16–36. https://doi.org/10.1007/s42822-019-00010-1.
   Web of Science ®Google Scholar
• The Ministry of Education. 2021. “The Special Education Development and Improvement Plan in the 14th Five-Year Plan Period.” The Ministry of Education. http://www.gov.cn/zhengce/content/2022-01/25/content_5670341.htm
   Google Scholar
• Moodie-Dyer, A., H. D. Joyce, D. Anderson-Butcher, and J. Hoffman. 2014. “Parent–Caregiver Experiences With the Autism Spectrum Disorder Service Delivery System.” Journal of Family Social Work 17 (4): 344–362. https://doi.org/10.1080/10522158.2014.903581.
   Google Scholar
• O’Connor, C., and H. Joffe. 2020. “Intercoder Reliability in Qualitative Research: Debates and Practical Guidelines.” International Journal of Qualitative Methods 19: 160940691989922 https://doi.org/10.1177/1609406919899220.
   Web of Science ®Google Scholar
• QSR International Pty Ltd. 2022. Nvivo Qualitative Data Analysis Software, Version 12. QSR International Pty Ltd.
   Google Scholar
• Reimers, T. M., D. P. Wacker, L. J. Cooper, and A. O. DeRaad. 1992. “Clinical Evaluation of The Variables Associated With Treatment Acceptability and Their Relation to Compliance.” Behavioral Disorders 18 (1): 67–76. https://doi.org/10.1177/019874299201800108.
   Google Scholar
• Rohrer, J. L., K. B. Marshall, C. Suzio, and M. J. Weiss. 2021. “Soft Skills: The Case for Compassionate Approaches or How Behavior Analysis Keeps Finding Its Heart.” Behavior Analysis in Practice 14 (4): 1135–1143. https://doi.org/10.1007/s40617-021-00563-x.
   PubMed Web of Science ®Google Scholar
• Shorey, S., E. D. Ng, G. Haugan, and E. Law. 2020. “The Parenting Experiences and Needs of Asian Primary Caregivers of Children With Autism: A Meta-Synthesis.” Autism: The International Journal of Research and Practice 24 (3): 591–604. https://doi.org/10.1177/1362361319886513.
   PubMed Web of Science ®Google Scholar
• Singh, N. N., W. J. Curtis, C. R. Ellis, M. W. Nicholson, T. M. Villani, and H. A. Wechsler. 1995. “Psychometric Analysis of the Family Empowerment Scale.” Journal of Emotional and Behavioral Disorders 3 (2): 85–91. https://doi.org/10.1177/106342669500300203.
   Web of Science ®Google Scholar
• Smith, J., A. S. Rabba, L. Cong, P. Datta, E. Dresens, G. Hall, M. Heyworth, et al. 2022. “‘They Were Saying That I Was A Typical Chinese Mum’: Chinese Parents’ Experiences of Parent-Teacher Partnerships for Their Autistic Children.” Journal of Autism and Developmental Disorders 53 (12): 4888–4900. https://doi.org/10.1007/s10803-022-05748-z.
   PubMedGoogle Scholar
• Smith, T., R. Klorman, and D. W. Mruzek. 2015. “Predicting Outcome of Community-Based Early Intensive Behavioral Intervention for Children With Autism.” Journal of Abnormal Child Psychology 43 (7): 1271–1282. https://doi.org/10.1007/s10802-015-0002-2.
   PubMed Web of Science ®Google Scholar
• Solish, A., and A. Perry. 2008. “Parents’ Involvement in Their Children’s Behavioral Intervention Programs: Parent and Therapist Perspectives.” Research in Autism Spectrum Disorders 2 (4): 728–738. https://doi.org/10.1016/j.rasd.2008.03.001.
   Web of Science ®Google Scholar
• Sullivan, O. A., and C. Wang. 2020. “Autism Spectrum Disorder Interventions in Mainland China: A Systematic Review.” Review Journal of Autism and Developmental Disorders 7 (3): 263–277. https://doi.org/10.1007/s40489-019-00191-w.
   Web of Science ®Google Scholar
• Sun, X., C. Allison, B. Auyeung, S. Baron-Cohen, and C. Brayne. 2013. “A Review of Healthcare Service and Education Provision of Autism Spectrum Condition in Mainland China.” Research in Developmental Disabilities 34 (1): 469–479. https://doi.org/10.1016/j.ridd.2012.08.013.
   PubMed Web of Science ®Google Scholar
• Sundler, A. J., E. Lindberg, C. Nilsson, and L. Palmér. 2019. “Qualitative Thematic Analysis Based on Descriptive Phenomenology.” Nursing Open 6 (3): 733–739. https://doi.org/10.1002/nop2.275.
   PubMed Web of Science ®Google Scholar
• Tang, L., and B. Bie. 2016. “The Stigma of Autism in China: An Analysis of Newspaper Portrayals of Autism Between 2003 and 2012.” Health Communication 31 (4): 445–452. https://doi.org/10.1080/10410236.2014.965381.
   PubMed Web of Science ®Google Scholar
• WHO (World Health Organization). 2023. Covid-19 Dashboard: China. Switzerland: World Health Organization. https://covid19.who.int/region/wpro/country/cn
   Google Scholar
• Yan, T., Y. Hou, M. Deng, and Feiyi Han. 2023. “The Effect of Family Capital on Psychological Adjustment of Chinese Children With Autism Spectrum Disorder in The Transition From Kindergarten to Primary School.” International Journal of Developmental Disabilities 1–10. https://doi.org/10.1080/20473869.2023.2233753.
   PubMed Web of Science ®Google Scholar
• Zhao, Y., Y. Luo, R. Zhang, and X. Zheng. 2023. “Direct and Indirect Costs for Families of Children With Autism Spectrum Disorder in China.” Autism: The International Journal of Research and Practice 27 (8): 2337–2347. https://doi.org/10.1177/13623613231158862.
   PubMed Web of Science ®Google Scholar
• Zhou, H., X. Xu, W. Yan, X. Zou, L. Wu, X. Luo, T. Li, et al. 2020. “Prevalence of Autism Spectrum Disorder in China: A Nationwide Multi-Center Population-Based Study Among Children Aged 6 to 12 Years.” Neuroscience Bulletin 36 (9): 961–971. https://doi.org/10.1007/s12264-020-00530-6.
   PubMed Web of Science ®Google Scholar