
Facilitators and Barriers in the Acquisition of Self-Determination in Children with Intellectual Disabilities Who Exhibit Behaviors That Challenge: A Qualitative Study
References
- Alfaro Urrutia, Jorge Eduardo. 2022. “Estudiantes Con Discapacidad Entre Inclusión e Integración: Revisión Sistemática de 10 Años de Tensiones y Contradicciones.” Perspectiva Educacional 61 (1): 152–80. DOI: 10.4151/07189729-VOL.61-ISS.1-ART.1211
- Arango, Paulina Sofía, Andrés Aparicio, and Marcela Tenorio. 2018. “Developmental Trajectories of Children with Down Syndrome by Socio-Economic Status: The Case of Latin America.” Journal of Intellectual Disability Research 62 (9): 759–74. DOI: 10.1111/JIR.12516
- Bigby, Christine. 2012. “Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review.” Journal of Intellectual & Developmental Disability 37 (4): 360–74. DOI: 10.3109/13668250.2012.721878
- Braun, Virginia, and Victoria Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2): 77–101. DOI: 10.1191/1478088706QP063OA
- Callon, Michell. 2001.
“Cuatro Modelos de Dinámica de La Ciencia.” In Desafíos Y Tensiones Actuales En Ciencia, Tecnología Y Sociedad, edited by Andoni Ibarra Unzueta and José Antonio López Cerezo, 1st ed., 27–70. Madrid: Biblioteca Nueva. - Chan, Jeffrey, Phillip French, and Lynne Webber. 2011. “Positive Behavioural Support and the UNCRPD.” International Journal of Positive Behavioural Support 1 (1): 7–13.
https://www.ingentaconnect.com/content/bild/ijpbs/2011/00000001/00000001/art00002 . - Cheng, Erika Rose, Mari Palta, Milton Kotelchuck, Julie Poehlmann, and Whitney P. Witt. 2014. “Cognitive Delay and Behavior Problems Prior to School Age.” Pediatrics 134 (3): e749–57. DOI: 10.1542/PEDS.2014-0259
- Chu, Szu Yin. 2018. “Perspectives of Taiwanese Families: A Preliminary Study on Promoting Self-Determination Skills of Young Children with Disabilities.” Early Childhood Education Journal 46 (6): 673–81. DOI: 10.1007/S10643-018-0909-7/METRICS
- Coons, Kelly D., and Shelley L. Watson. 2013. “Conducting Research with Individuals Who Have Intellectual Disabilities: Ethical and Practical Implications for Qualitative Research.” Journal on Developmental Disabilities 19 (2): 14–24.
https://canfasd.ca/wp-content/uploads/publications/Coons-Watson-2013-Conducting-research-with-individuals-who-have-intellectual-disabilities-Ethical-and-practical-implications-for-qualitative-research.pdf . - Correa, Gonzalo. 2023.
“Ni Humanos Ni No-Humanos: De La Agencia Distribuida a La Pluralidad Multimodal de La Acción.” In La Teoría Del Actor Red Desde América Latína, edited by Leandro Rodriguez Medina, María de los Ángeles Pozas, and Lidia Girola, 1st ed., 125–53. México D.F.: El Colegio de México. DOI: 10.2307/jj.4449574.6 - Dew, Angela, Susan Collings, Leanne Dowse, Ariella Meltzer, and Louisa Smith. 2019. “I Don’t Feel like I’m in This on My Own’: Peer Support for Mothers of Children with Intellectual Disability and Challenging Behaviour.” Journal of Intellectual Disabilities 23 (3): 344–58. DOI: 10.1177/1744629519843012
- Emerson, Eric, and Steward L. Einfeld. 2011. Challenging Behaviour, 3rd ed. New York: Cambridge University Press. DOI: 10.1017/CBO9780511861178
- García Alonso, José Vidal. 2003. El Movimiento de Vida Independiente: Experiencias Internacionales, edited by José Vidal García Alonso, 1st ed., Vol. 1. Madrid: Fundación Luis Vives.
- Gobierno de Chile. 2023. Ley Chile – Ley 21545- Biblioteca del Congreso Nacional. Diario Oficial de la Republica de Chile.
https://www.bcn.cl/leychile/navegar?idNorma=1190123 - Goodman, Robert. 1997. “The Strengths and Difficulties Questionnaire: A Research Note.” Journal of Child Psychology and Psychiatry 38 (5): 581–86. DOI: 10.1111/J.1469-7610.1997.TB01545.X
- Gore, Nick J., Peter McGill, Sandy Toogood, David Allen, J. Carl Hughes, Peter A. Baker, Richard P. Hastings, Stephen J. Noone, and Louise D. Denne. 2013. “Definition and Scope for Positive Behavioural Support.” International Journal of Positive Behavioural Support 2 (3,2): 5–13.
http://www.ingentaconnect.com/content/bild/ijpbs/2013/00000003/00000002/art00003 . - Grenier-Martin, Justine, and Mélina Rivard. 2022. “Managing Challenging Behaviors at Home without Services: The Perspective of Parents Having Young Children with Intellectual and Developmental Disability.” Journal of Developmental and Physical Disabilities 34 (2): 373–97. DOI: 10.1007/s10882-021-09804-x
- Grove, Lauren, Yingying Yang, Dai’jah Diggs, and Arielle Hershkovich. 2022. “Parental Participation in Intellectual and Developmental Disability Research: A Review of Diversity.” Disabilities 2 (2): 219–34. DOI: 10.3390/DISABILITIES2020016
- Grung, Rolf Magnus, Anna Odrowąż-Coates, Jude Tah, Paul Maloret, Julien Kiss, and Florica Ortan. 2021. “The Response to Challenging Behavior as a Barrier to Social Inclusion Erasmus+ Project Participants’ Perspectives on Policy and Practice.” Society Register 5 (3): 37–62. DOI: 10.14746/SR.2021.5.3.03
- Guest, Greg, Kathleen MacQueen, and Emily Namey. 2012. Applied Thematic Analysis. Thousand Oaks, CA: SAGE Publications Inc. DOI: 10.4135/9781483384436
- Hastings, Richard P., David Allen, Peter Baker, Nick J. Gore, J Carl Hughes, Peter McGill, Stephen J. Noone, and Sandy Toogood. 2013. “A Conceptual Framework for Understanding Why Challenging Behaviours Occur in People with Developmental Disabilities.” International Journal of Positive Behavioural Support 3(2): 5–13.
- Heerings, Marjolijn, Hester van de Bovenkamp, Mieke Cardol, and Roland Bal. 2022. “Ask Us! Adjusting Experience-Based Codesign to Be Responsive to People with Intellectual Disabilities, Serious Mental Illness or Older Persons Receiving Support with Independent Living.” Health Expectations 25 (5): 2246–54. DOI: 10.1111/HEX.13436
- Hernández Sampieri, Roberto, Carlos Fernández Collado, and María del Pilar Baptista Lucio. 2014. Metodología de La Investigación. Sexta Edición, edited by Miguel Ángel Toledo Castellano. 6th ed. Mexico D.F.
- Johannessen, Lars E.F., Erik Børve Rasmussen, and Marit Haldar. 2025. “Five Misconceptions About Interview Modes or: How to Improve Our Thinking About Face-to-Face Versus Remote Interviewing.” International Journal of Qualitative Methods 24 (January): 1–13. DOI: 10.1177/16094069251317808
- Jorgensen, Mikaela, Karen Nankervis, and Jeffrey Chan. 2023. “‘Environments of Concern’: Reframing Challenging Behaviour within a Human Rights Approach.” International Journal of Developmental Disabilities 69 (1): 95–100. DOI: 10.1080/20473869.2022.2118513
- Kaiser, Barbara, and Judy S. Raminsky. 2017. Challenging Behavior in Young Children Understanding, Preventing, and Responding Effectively, edited by Jeffrey W. Johnston, 4th ed. New York: Pearson.
- Kassari, Connie, and Stephanny Freeman. 2001. “Task-Related Social Behavior in Children With Down Syndrome.” American Journal on Intellectual and Developmental Disabilities 106 (3): 253–64. DOI: 10.1352/0895-8017(2001)106<;0253:TRSBIC>2.0.CO;2
- Kúld, P.B., N. Frielink, C. Schuengel, and P.J.C.M. Embregts. 2024. “Supporting Self-Determination of Individuals with Severe or Profound Intellectual and Multiple Disabilities According to Relatives and Healthcare Professionals: A Concept Mapping Study.” Journal of Applied Research in Intellectual Disabilities 37 (4):
e13267 . DOI: 10.1111/JAR.13267 - Latour, Bruno. 2005. Reensamblar Lo Social: Una Introducción a La Teoría Del Actor-Red, edited by Daniela Gutierrez, 1st ed. Buenos Aires: Manantial.
- MacNeil, Morgan, Britney Benoit, Timothy Disher, Aaron J. Newman, and Marsha Campbell-Yeo. 2024. “Challenges and Best Practices for Recruiting Families of Children with Intellectual Disabilities for Health Research.” Journal of Intellectual Disabilities 3 (May): 1–14. DOI: 10.1177/17446295241255178
- McGill, Peter, Jill Bradshaw, Genevieve Smyth, Maria Hurman, and Ashok Roy. 2020. “Capable Environments.” Tizard Learning Disability Review 25 (3): 109–16. DOI: 10.1108/TLDR-05-2020-0007
- Mol, Annemarie. 2010. “Actor-Network Theory: Sensitive Terms and Enduring Tensions.” Kölner Zeitschrift Für Soziologie Und Sozialpsychologie. Sonderheft 50 (1): 253–69.
https://dare.uva.nl . - Mumbardó-Adam, Cristina, Araceli Arellano, Eva Vicente, and Ana Berástegui. 2023. “How Should We Support Families of People with Intellectual Disability to Promote Their Self-Determination? A Delphi Study on Critical Components for Intervention.” Journal of Intellectual & Developmental Disability 48 (4): 357–69. DOI: 10.3109/13668250.2023.2234547
- Nicholson, Clare, W. Mick L. Finlay, and Steven Stagg. 2021. “Forms of Resistance in People with Severe and Profound Intellectual Disabilities.” Sociology of Health & Illness 43 (3): 642–59. DOI: 10.1111/1467-9566.13246
- Nota, L., L. Ferrari, S. Soresi, and M. Wehmeyer. 2007. “Self-Determination, Social Abilities and the Quality of Life of People with Intellectual Disability.” Journal of Intellectual Disability Research 51 (11): 850–65. DOI: 10.1111/J.1365-2788.2006.00939.X
- Palacios, Agustina, and Javier Romañach. 2006. El Modelo de La Diversidad La Bioética y Los Derechos Humanos Como Herramientas Para Alcanzar La Plena Dignidad En La Diversidad Funcional, edited by Agustina Palacios and JAvier Romañach. Madrid: Ediciones Diversitas-AIES.
- Palmer, Susan B., Michael L. Wehmeyer, and Karrie A. Shogren. 2017. “The Development of Self-Determination During Childhood.” Development of Self-Determination Through the Life-Course January: 71–88. DOI: 10.1007/978-94-024-1042-6_6
- Piekema, Lotte, Annet ten Brug, Aly Waninge, and Annette van der Putten. 2024. “From Assistive to Inclusive? A Systematic Review of the Uses and Effects of Technology to Support People with Pervasive Support Needs.” Journal of Applied Research in Intellectual Disabilities 37 (2):
e13181 . DOI: 10.1111/JAR.13181 - Rotarou, Elena S., and Dikaios Sakellariou. 2017. “Inequalities in Access to Health Care for People with Disabilities in Chile: The Limits of Universal Health Coverage.” Critical Public Health 27 (5): 604–16. DOI: 10.1080/09581596.2016.1275524
- Ryan, Richard M., and Edward L. Deci. 2020. “Intrinsic and Extrinsic Motivation from a Self-Determination Theory Perspective: Definitions, Theory, Practices, and Future Directions.” Contemporary Educational Psychology 61 (April): 101860. DOI: 10.1016/J.CEDPSYCH.2020.101860
- Schalock, Robert L., Ruth Luckasson, and Karrie A. Shogren. 2020. “Going beyond Environment to Context: Leveraging the Power of Context to Produce Change.” International Journal of Environmental Research and Public Health 17(6): 1885. DOI: 10.3390/IJERPH17061885
- Scior, Katrina. 2016.
“Toward Understanding Intellectual Disability Stigma: Introduction.” In Intellectual Disability and Stigma, edited by K. Scior and S. Werner, 3–13. London: Palgrave Macmillan. DOI: 10.1057/978-1-137-52499-7_1 - Shogren, Karrie A., Michael L. Wehmeyer, and Kathryn M. Burke. 2017.
“Self-Determination.” In Handbook of Positive Psychology in Intellectual and Developmental Disabilities, edited by K. Shogren, M. Wehmeyer, and N. Singh, 49–64. Cham: Springer. DOI: 10.1007/978-3-319-59066-0_5 - Shogren, Karrie A., Michael L. Wehmeyer, and Susan B. Palmer. 2017. “Causal Agency Theory.” Development of Self-Determination Through the Life-Course, January: 55–67. DOI: 10.1007/978-94-024-1042-6_5
- Shogren, Karrie A., Michael Wehmeyer, Susan Palmer, Todd Little, Susana López, and Anjali J. Forber-Pratt. 2015. “Causal Agency Theory: Reconceptualizing a Functional Model of Self-Determination.” Education and Training in Autism and Developmental Disabilities 50 (3): 251–63.
https://psycnet.apa.org/record/2015-55785-001 - Soenens, Bart, Edward L. Deci, and Maarten Vansteenkiste. 2017. “How Parents Contribute to Children’s Psychological Health: The Critical Role of Psychological Need Support.” Development of Self-Determination Through the Life-Course January: 171–87. DOI: 10.1007/978-94-024-1042-6_13
- Soto, Mauro. 2023. “Ciencia, Tecnología y Discapacidad.” Revista Iberoamericana de Ciencia, Tecnología y Sociedad – CTS 18 (52): 43–62. DOI: 10.52712/ISSN.1850-0013-401
- Summers, Jean Ann, Mary Jane Brotherson, Elizabeth J. Erwin, Susan P. Maude, Susan B. Palmer, Shana J. Haines, Vera Stroup-Rentier, Hsiang-Yi Wu, Nancy Farstad Peck, and Yuzhu Z. Zheng. 2014. “Family Reflections on the Foundations of Self-Determination in Early Childhood.” Inclusion 2 (3): 175–94. DOI: 10.1352/2326-6988-2.03.175
- Taheri, A., A. Perry, and P. Minnes. 2017. “Exploring Factors That Impact Activity Participation of Children and Adolescents with Severe Developmental Disabilities.” Journal of Intellectual Disability Research 61 (12): 1151–61. DOI: 10.1111/JIR.12437
- Tenorio, Marcela, Paulina Sofía Arango, Andrés Aparicio, Afia Ali, and Angela Hassiotis. 2022. “As Far as Possible: The Relationship between Public Awareness, Social Distance, and Stigma towards People with Intellectual Disability.” Journal of Policy and Practice in Intellectual Disabilities 19 (4): 419–30. DOI: 10.1111/JPPI.12416
- Tirado Serrano, Francisco Javier, and Miquel Domènech i Argemí. 2005. “Asociaciones Heterogéneas y Actantes: El Giro Postsocial de La Teoría Del Actor-Red.” AIBR: Revista de Antropología Iberoamericana 1: 4–30.
https://dialnet.unirioja.es/servlet/articulo?codigo=1382237&info=resumen&idioma=SPA . - United Nations. 2006. “Convención Sobre Los Derechos de Las Personas Con Discapacidad.” December 2006.
https://www.un.org/esa/socdev/enable/documents/tccconvs.pdf . - van den Bogaard, Kjhm, M. Lugtenberg, S. Nijs, and P.J.C.M. Embregts. 2019. “Attributions of People with Intellectual Disabilities of Their Own or Other Clients’ Challenging Behavior: A Systematic Review of Qualitative Studies.” Journal of Mental Health Research in Intellectual Disabilities 12 (3–4): 126–51. DOI: 10.1080/19315864.2019.1636911
- van Tuyll van Serooskerken, Jacqueline M., Agnes M. Willemen, Anne de la Croix, Petri J.C.M. Embregts, and Carlo Schuengel. 2022. “Satisfying Basic Psychological Needs among People with Complex Support Needs: A Self-Determination Theory-Guided Analysis of Primary Relatives’ Perspectives.” Disabilities 2 (2): 330–47. DOI: 10.3390/DISABILITIES2020024
- Vega Córdova, Vanessa, Izaskun Álvarez-Aguado, Félix González Carrasco, Herbert Spencer González, Marcela Jarpa Azagra, and Katherine Exss Cid. 2023. “Experiences of Adults with Intellectual Disabilities on the Right to Independent Living: A Case Study.” Interdisciplinaria 40 (2): 281–318. DOI: 10.16888/INTERD.2023.40.2.18
- Vicente, Eva, Cristina Mumbardó-Adam, Verónica M. Guillén, Teresa Coma-Roselló, María Ángeles Bravo-álvarez, and Sergio Sánchez. 2020. “Self-Determination in People with Intellectual Disability: The Mediating Role of Opportunities.” International Journal of Environmental Research and Public Health 17 (17): 6201. DOI: 10.3390/IJERPH17176201
- Vicente, Eva, Patricia Pérez-Curiel, Cristina Mumbardó-Adam, Verónica M. Guillén, and María Ángeles Bravo-Álvarez. 2023. “Personal Factors, Living Environments, and Specialized Supports: Their Role in the Self-Determination of People with Intellectual Disability.” Behavioral Sciences 13 (7): 530. DOI: 10.3390/BS13070530
- Watson, Jo. 2012.
“Supported Decision Making for People with Severe to Profound Intellectual Disability We’re All in This Together Aren’t We?” In Services and Families Working Together to Support Adults with Intellectual Disability, edited by Christine Bigby and Chris Fyffe, 1st ed., Vol. 1, 28–48. Bundoora: Living with Disability Group, School of Allied Health, La Trobe University. - Wehmeyer, Michael. 2008. “Autodeterminación y la Tercera Generación de prácticas de inclusión.” December 4, 2008.
https://www.educacionfpydeportes.gob.es/revista-de-educacion/numeros-revista-educacion/numeros-anteriores/2009/re349/re349–03.html . - Zapico Lafuente, Julieta. 2020. “Análisis Teórico y Aplicado Del Principio de Autonomía Progresiva En La Primera Infancia.” Revista de Estudios Ius Novum 13 (2): 158–85.
https://www.revistaiusnovum.cl/index.php/REIN/article/view/85 .
DOI: https://doi.org/10.16993/sjdr.1189 | Journal eISSN: 1745-3011
Language: English
Page range: 619 - 634
Submitted on: Sep 2, 2024
Accepted on: Jan 3, 2025
Published on: Nov 17, 2025
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
© 2025 Ignacio Alfredo Veron-Schmidt, Paulina Sofía Arango-Uribe, Nicolas Schongut-Grollmus, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.