Study Protocol for a Randomized Controlled Trial Evaluating the Effectiveness of a Group-Based Self-Determination Enhancement Intervention for Adults with Mild Intellectual Disability and Their Caregivers

Phyllis King Shui Wong, Phyllis King Shui Wong

Abstract

Self-determination is regarded as an adult outcome for people with an intellectual disability (ID). However, self-determination curricula are rarely available in Hong Kong. This paper outlines a protocol for an experimental study that examines the effectiveness of a group-based self-determination enhancement intervention for adults with mild ID and their caregivers. A randomized controlled trial with pre-test, post-test and three-month follow-up is proposed. A total of 120 participants will be randomly assigned to three conditions: self-determination enhancement group, self-determination enhancement PLUS group (with caregivers in a parallel group) and leisure activity group as a control condition. Five groups will be organized for each of the three conditions. There will be 10 sessions per group covering the core components of self-determination including self-knowledge, goal setting and attaining goals, self-regulating and adjusting plans. Components for caregivers include understanding how self-determination and REACH responding skills can support their children to exercise self-determination through positive interaction. Self-determination competencies and personal well-being will be measured at three points in time. The proposed study is the first evidence-based local study aimed at examining a culturally tailored self-determination enhancement intervention for people with ID and fills a research gap in existing interventions. If the intervention is demonstrated to be effective, it will provide new knowledge for a group-based intervention and will be used with Chinese-speaking people with ID in different parts of the world. (Trial registration: ClinicalTrials.gov: NCT05167929).

Keywords: Hong Kong adults with ID; caregivers; group-based intervention; personal well-being; randomized controlled trial; self-determination.

Conflict of interest statement

The author declares no conflict of interest.

Figures

Figure 1
Figure 1
Conceptual Framework of the Group-Based SD Enhancement Intervention.
Figure 2
Figure 2
Design Structure of the Study.

References

    1. United Nations . The International Covenant on Civil and Political Rights. UN; New York, NY, USA: 1967.
    1. Nirje B. The Right to Self-Determination. In: Wolfensberger W., editor. The Principle of Normalization in Human Services. National Institute on Mental Retardation; Toronto, ON, Canada: 1972. pp. 176–193.
    1. United Nations . The UN Convention on the Rights of Persons with Disabilities 2006. UN; New York, NY, USA: 2006.
    1. World Health Organization . How to use the ICF: A Practical Manual for Using the International Classification of Functioning, Disability and Health (ICF) Exposure Draft for Comment. WHO; Geneva, Switzerland: 2013.
    1. Lee S.H., Wehmeyer M.L., Soukup J.H., Palmer S.B. Impact of Curriculum Modifications on Access to the General Education Curriculum for Students with Disabilities. Except. Child. 2010;76:213–233. doi: 10.1177/001440291007600205.
    1. Loon J.V., Hove G.V. Emancipation and Self-Determination of People with Learning Disabilities and Down-Sizing Institutional Care. Disabil. Soc. 2001;16:233–254. doi: 10.1080/09687590120035825.
    1. Schalock R.L., Harper R.S. A Systems Approach to Community Living Skills Training. In: Bruininks R.H., Meyers C.E., Sigford B.B., Lakin K.C., editors. Deinstitutionalization and Community Adjustment of Mentally Retarded People. American Association on Mental Deficiency; Washington, DC, USA: 1981. pp. 316–336.
    1. Wehmeyer M.L., Palmer S.B. Adult Outcomes for Students with Cognitive Disabilities Three-years After High School: The Impact of Self-Determination. Educ. Train. Dev. Disabil. 2003;38:131–144.
    1. Shogren K.A., Wehmeyer M.L., Palmer S.B., Rifenbark G.G., Little T.D. Relationship Between Self-Determination and Postschool Outcomes for Youth with Disabilities. J. Spec. Educ. 2015;48:256–267. doi: 10.1177/0022466913489733.
    1. Powers L.E., Geenen S., Powers J., Pommier-Satya S., Turner A., Dalton L.D., Drummond D., Swank P. My Life: Effects of a Longitudinal, Randomized Study of Self-Determination Enhancement on the Transition Outcomes of Youth in Foster Care and Special Education. Child. Youth Serv. Rev. 2012;34:2179–2187. doi: 10.1016/j.childyouth.2012.07.018.
    1. Lachapelle Y., Wehmeyer M.L., Haelewyck M.C., Courbois Y., Keith K.D., Schalock R., Verdugo M.A., Walsh P.N. The Relationship Between Quality of Life and Self Determination: An International Study. J. Intellect. Disabil. Res. 2005;49:740–744. doi: 10.1111/j.1365-2788.2005.00743.x.
    1. Schalock R.L., Felce D. Quality of Life and Subjective Well-being: Conceptual and Measurement Issues. In: Emerson E., Hatton C., Thompson T., Parmenter T.R., editors. The International Handbook of Applied Research in Intellectual Disabilities. Wiley; Chichester, UK: 2004. pp. 261–279.
    1. Taylor S.J. In Support of Research on Quality of Life, but against QoL. In: Goode D., editor. Quality of Life for Persons with Disabilities: International Perspectives and Issues. Brooklin Books; Cambridge, MA, USA: 1994. pp. 260–265.
    1. Wehmeyer M.L., Schalock R.L. Self-determination and Quality of Life: Implications for Special Education Services and Supports. Focus Except. Child. 2001;33:1–16.
    1. Wehmeyer M.L., Schwartz M. The Relationship Between Self-Determination and Quality of Life for Adults with Mental Retardation. Educ. Train. Ment. Retard. Dev. Disabil. 1998;33:3–12.
    1. Wong P.K.S., Chow A.Y.M. Self-Determination Competencies, (Dis)Agreement in Decision-Making, and Personal Well-Being of Adults with Mild Intellectual Disabilities in Hong Kong. Int. J. Environ. Res. Public Health. 2021;18:10721. doi: 10.3390/ijerph182010721.
    1. Wehmeyer M.L., Shogren K.A., Palmer S.B., Williams-Diehm K.L., Little T.D., Boulton A. The impact of the self-determined learning model of instruction on student self-determination. Except. Child. 2012;78:135–153. doi: 10.1177/001440291207800201.
    1. Deci E.L., Ryan R.M. Intrinsic Motivation and Self-Determination in Human Behaviour. Plenum Press; New York, NY, USA: 1985.
    1. Ryan R.M., Deci E.L. Intrinsic and Extrinsic Motivation from a Self-Determination Theory Perspective: Definitions, Theory, Practices, and Future Directions. Contemp. Educ. Psychol. 2020;61:101860. doi: 10.1016/j.cedpsych.2020.101860.
    1. Ryan R.M., Deci E.L. Self-Determination Theory: Basic Psychological Needs in Motivation, Development, and Wellness. Guilford Press; New York, NY, USA: London, UK: 2017.
    1. Deci E.L., Ryan R.M. Motivation, Personality, and Development within Embedded Social Contexts: An Overview of Self-Determination Theory. In: Ryan R.M., editor. Oxford Handbook of Human Motivation. Oxford University Press; New York, NY, USA: 2012. pp. 85–107.
    1. Vansteenkiste M., Lens W., Soenens B., Luyckx K. Autonomy and Relatedness among Chinese Sojourners and Applicants: Conflictual or Independent Predictors of Well-Being and Adjustment? Motiv. Emot. 2006;20:273–282. doi: 10.1007/s11031-006-9041-x.
    1. Ryan R.M., Deci E.L. Overview of Self-Determination Theory: An Organism Dialectical Perspective. In: Deci E.L., Ryan R.M., editors. Handbook of Self-Determination Research. University of Rochester Press; Rochester, NY, USA: 2002.
    1. Ryan R.M., Deci E.L. Self-Determination Theory and the Facilitation of Intrinsic Motivation, Social Development, and Wellbeing. Am. Psychol. 2000;55:68–78. doi: 10.1037/0003-066X.55.1.68.
    1. Wehmeyer M.L. A functional theory of self-determination: Definition and categorization. In: Wehmeyer M.L., Abery B.H., Mithaug D.E., Stancliffe R.J., editors. Theory in Self-Determination: Foundations for Educational Practice. Charles C Thomas; Springfield, IL, USA: 2003. pp. 174–181.
    1. Wehmeyer M.L. A functional theory of self-determination: Model overview. In: Wehmeyer M.L., Abery B.H., Mithaug D.E., Stancliffe R.J., editors. Theory in Self-Determination: Foundations for Educational Practice. Charles C Thomas; Springfield, IL, USA: 2003. pp. 182–201.
    1. Wehmeyer M.L., Abery B.H. Self-determination and choice. Intellect. Dev. Disabil. 2013;51:399–411. doi: 10.1352/1934-9556-51.5.399.
    1. Abery B., Stancliffe R. An ecological theory of self-determination: Theoretical foundations. In: Wehmeyer M.L., Abery B.H., Mithaug D.E., Stancliffe R.J., editors. Theory in Self-Determination: Foundations for Educational Practice. Charles C Thomas; Springfield, IL, USA: 2003. pp. 25–42.
    1. Wehmeyer M.L., Abery B.H., Zhang D., Ward K., Willis D., Hossain W.A., Balcazar F., Ball A., Bacon A., Calkins C., et al. Personal self-determination and moderating variables that impact efforts to promote self-determination. Exceptionality. 2011;19:19–30. doi: 10.1080/09362835.2011.537225.
    1. Mithaug D.E., Mithaug D.K., Agran M., Martin J.E., Wehmeyer M.L. Self-Determined Learning Theory: Construction, Verification, and Evaluation. Lawrence Erlbaum Associates; Mahwah, NJ, USA: 2003.
    1. Wehmeyer M.L., Abery B.H., Mithaug D.E., Stancliffe R.J. Theory in Self-Determination: Foundations for Educational Practice. Charles C Thomas; Springfield, IL, USA: 2003.
    1. Wong P.K.S., Wong D.F.K., Zhuang X.Y., Liu Y. Psychometric Properties of the AIR Self-Determination Scale: The Chinese Version (AIR SDS-C) for Chinese people with Intellectual Disabilities. J. Intellect. Disabil. Res. 2017;61:233–244. doi: 10.1111/jir.12343.
    1. Shogren K.A. A Social-Ecological Analysis of the Self-Determination Literature. Intellect. Dev. Disabil. 2013;51:496–511. doi: 10.1352/1934-9556-51.6.496.
    1. Walker H.M., Calkins C., Wehmeyer M.L., Walker L., Bacon A., Palmer S.B., Jesien G.S., Nygren M.A., Heller T., Gotto G.S., et al. A Social-Ecological Approach to Promote Self-Determination. Exceptionality. 2011;19:6–18. doi: 10.1080/09362835.2011.537220.
    1. Carter E.W., Lane K.L., Cooney M., Weir K., Moss C.K., Machalicek W. Parent Assessments of Self-Determination Importance and Performance for Students with Autism or Intellectual Disability. Am. J. Intellect. Dev. Disabil. 2011;116:16–31. doi: 10.1352/1944-7558-118.1.16.
    1. Leake D., Boone R. Multicultural Perspectives on Self-Determination from Youth, Parent, and Teacher Focus Groups. Career Dev. Except. Individ. 2007;30:104–115. doi: 10.1177/08857288070300020101.
    1. Shogren K.A. Hispanic Mothers’ Perceptions of Self-Determination. Res. Pract. Pers. Sev. Disabil. 2012;37:170–184. doi: 10.2511/027494812804153561.
    1. Chu S.-Y. Family Voices: Promoting Foundation Skills of Self-Determination for Young Children with Disabilities in Taiwan. Asia Pac. Educ. Rev. 2018;19:91–101. doi: 10.1007/s12564-018-9519-8.
    1. Zhang D. Parent Practices in Facilitating Self-Determination Skills: The Influences of Culture, Socioeconomic Status, and Children’s Special Education Status. Res. Pract. Pers. Sev. Disabil. 2005;30:154–162. doi: 10.2511/rpsd.30.3.154.
    1. Cudré-Mauroux A., Piérart G., Vaucher C. The Importance of the Relational Needs of People with Learning Disabilities in the Promotion of Self-Determination. Br. J. Learn. Disabil. 2019;47:174–180. doi: 10.1111/bld.12268.
    1. Cudré-Mauroux A., Piérart G., Vaucher C. Partnership with Social Care Professionals as a Context for Promoting Self-Determination among People with Intellectual Disabilities. Res. Dev. Disabil. 2020;99:103602. doi: 10.1016/j.ridd.2020.103602.
    1. Pelletier J.E., Joussemet M. The Benefits of Supporting the Autonomy of Individuals with Mild Intellectual Disabilities: An Experimental Study. J. Appl. Res. Intellect. Disabil. 2017;30:830–846. doi: 10.1111/jar.12274.
    1. Wong P.K.S. Searching for a Dynamic Equilibrium in Decision Making: The Voices of Adults with Mild Intellectual Disability And their Significant Others in Hong Kong. [(accessed on 15 December 2021)];Disabil. Rehabil. 2021 :1–11. doi: 10.1080/09638288.2021.1925978. doi: 10.1080/09638288.2021.1925978. Available online:
    1. Heller T., Schindler A., Palmer S., Wehmeyer M.L., Parent W., Jenson R., Abery B., Geringer W., Bacon A., O’Hara D.M. Self-Determination Across the Life Span: Issues and Gaps. Exceptionality. 2011;19:31–45. doi: 10.1080/09362835.2011.537228.
    1. Shogren K.A., Wehmeyer M.L., Burke K.M., Palmer S.B. The Self-Determination Learning Model of Instruction: Teacher’s Guide. Kansas University Center on Developmental Disabilities; Lawrence, KS, USA: 2017.
    1. Lee S., Wehmeyer M.L., Shogren K.A. Effect of Instruction with the Self-Determined Learning Model of Instruction on Students with Disabilities: A Meta-Analysis. Educ. Train. Autism Dev. Disabil. 2015;50:237–247.
    1. Caouette M., Lachapelle Y., Moreau J., Lussier-Desrochers D. Descriptive study of caseworkers’ practices to support the development of self-determination of adults with intellectual disabilities. J. Policy Pract. Intellect. Disabil. 2018;15:4–11. doi: 10.1111/jppi.12217.
    1. Lee S.H. Perceptions of Special Education Teachers and Parents on Self-Determination of Students with Disabilities and Instructional Practices. J. Spec. Educ. Theory Pract. 2009;10:195–229.
    1. Ryan R.M., Deci E.L., Vansteenkiste M., Soenens B. Building a science of motivated persons: Self-determination theory’s empirical approach to human experience and the regulation of behavior. Motiv. Sci. 2021;7:97–110. doi: 10.1037/mot0000194.
    1. Moè A., Katz I., Cohen R., Alesi M. Reducing homework stress by increasing adoption of need-supportive practices: Effects of an intervention with parents. Learn. Individ. Differ. 2020;82:101921. doi: 10.1016/j.lindif.2020.101921.
    1. Moè A., Katz I., Alesi M. Scaffolding for motivation by parents, and child homework motivations and emotions: Effects of a training programme. Br. J. Educ. Psychol. 2018;88:323–344. doi: 10.1111/bjep.12216.
    1. Vansteenkiste M., Aelterman N., De Muynck G.J., Haerens L., Patall E., Reeve J. Fostering personal meaning and self-relevance: A self-determination theory perspective on internalization. J. Exp. Educ. 2018;86:30–49. doi: 10.1080/00220973.2017.1381067.
    1. Wong P.K.S., Wong D.F.K., Schalock R.L., Chou Y.-C. Initial Validation of the Chinese Quality of Life Questionnaire—Intellectual Disabilities (CQOL-ID): A Cultural Perspective. J. Intellect. Disabil. Res. 2011;55:572–580. doi: 10.1111/j.1365-2788.2011.01412.x.
    1. Powers L.E., Turner A., Ellison R. A Multi-Component Intervention to Promote Adolescent Self-Determination. J. Rehabil. 2001;67:13–19.
    1. Deci E.L., Chandler C.L. The Importance of Motivation for the Future of the LD Field. J. Learn. Disabil. 1986;19:587–594. doi: 10.1177/002221948601901003.
    1. Deci E.L., Eghrari H., Patrick B.C., Leone D.R. Facilitating Internalization: The Self-Determination Theory Perspective. J. Pers. 1994;62:119–142. doi: 10.1111/j.1467-6494.1994.tb00797.x.
    1. Steingut R.R., Patall E.A., Trimble S.S. The Effect of Rationale Provision on Motivation and Performance Outcomes: A Meta-Analysis. Motiv. Sci. 2017;3:19–50. doi: 10.1037/mot0000039.
    1. Vansteenkiste M., Simons J., Lens W., Soenens B., Matos L. Examining the Motivational Impact of Intrinsic Versus Extrinsic Goal Framing and Autonomy-Supportive Versus Internally Controlling Communication Style on Early Adolescents’ Academic Achievement. Child Dev. 2005;76:483–501. doi: 10.1111/j.1467-8624.2005.00858.x.
    1. Borek A.J., Abraham C., Greaves C.J., Gillison F., Tarrant M., Morgan-Trimmer S., McCabe R., Smith J.R. Identifying Change Processes in Group-Based Health Behaviour-Change Interventions: Development of the Mechanisms of Action in Group-Based Interventions (MAGI) Framework. Health Psychol. Rev. 2019;13:227–247. doi: 10.1080/17437199.2019.1625282.
    1. Borek A.J., Smith J.R., Greaves C.J., Gillison F., Tarrant M., Morgan-Trimmer S., McCabe R., Abraham C. Developing and Applying a Framework to Understand Mechanisms of Action in Group-Based, Behaviour Change Interventions: The Magi Mixed-Methods Study. Effic. Mech. Eval. 2019;6:3. doi: 10.3310/eme06030.
    1. Boxmeyer C.L., Lochman J.E., Kassing F., Mitchell Q.P., Romero D. Cognitive Therapies: Anger Management. In: Martel M.M., editor. Developmental Pathways to Disruptive, Impulse-Control and Conduct Disorders. Academic Press; London, UK: 2018. pp. 239–262.
    1. Dučić B., Gligorović M., Kaljača S. Relation Between Working Memory and Self-Regulation Capacities and the Level of Social Skills Acquisition in People with Moderate Intellectual Disability. J. Appl. Res. Intellect. Disabil. 2018;31:296–307. doi: 10.1111/jar.12385.
    1. Griffin T., Balandin S. Ethical Research Involving People with Intellectual Disabilities. In: Emerson E., Hatton C., Thompson T., Parmenter T.R., editors. The International Handbook of Applied Research in Intellectual Disabilities. John Wiley & Sons; Chichester, UK: 2004. pp. 61–82.
    1. Emerson E., Hatton C., Thompson T., Parmenter T.R., editors. The International Handbook of Applied Research in Intellectual Disabilities. John Wiley & Sons; Chichester, UK: 2004.
    1. Wong P.K.S. Evaluating the Outcomes of a Self-Determination Group for Adults with Intellectual Disabilities: A Pretest-Posttest Control Group; Proceedings of the 5th International Conference on Social Work in Health and Mental Health; Hong Kong. 10–14 December 2006.
    1. Fixsen D.L., Naoom S.F., Blasé K.A., Friedman R.M., Wallace F. Implementation Research: A Synthesis of the Literature. Louis de la Parte Florida Mental Health Institute Publication #231; University of South Florida; Tampa, FL, USA: 2005.
    1. Cummins R.A., Lau A.L.D. Personal Wellbeing Index—Intellectual Disability (Cantonese) School of Psychology, Deakin University; Melbourne, VIC, Australia: 2005.
    1. Lau A.L.D., Cummins R.A., McPherson W. An Investigation into the Cross-Cultural Equivalence of the Personal Wellbeing Index. Soc. Indic. Res. 2005;72:403–430. doi: 10.1007/s11205-004-0561-z.
    1. Schlomer G.L., Bauman S., Card N.A. Best Practices for Missing Data Management in Counseling Psychology. J. Couns. Psychol. 2010;57:1–10. doi: 10.1037/a0018082.
    1. Cohen J. Statistical Power Analysis for the Behavioural Sciences. 2nd ed. Lawrence Erlbaum; Hillsdale, NJ, USA: 1988.

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