1,240
Views
2
CrossRef citations to date
0
Altmetric
Research Articles

Operationalisation of self-determination of persons with profound intellectual and multiple disabilities: A Delphi study

ORCID Icon, , ORCID Icon & ORCID Icon

References

  • Adler, M., & Ziglio, E. (1996). Gazing into the oracle: The Delphi method and its application to social policy and public health. Jessica Kingsley Publishers.
  • Bruce, S. M., & Vargas, C. (2007). Intentional communication acts expressed by children with severe disabilities in high-rate contexts. Augmentative and Alternative Communication, 23(4), 300–311. https://doi.org/10.1080/07434610601179960
  • Carter, E. W., Owens, L., Trainor, A. A., Sun, Y., & Swedeen, B. (2009). Self-determination skills and opportunities of adolescents with severe intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 114(3), 179–192. https://doi.org/10.1352/1944-7558-114.3.179
  • Deci, E. L., & Ryan, R. M. (2000). The “what” and “Why” of goal pursuits: Human needs and the self-determination of behavior. Psychological Inquiry, 11(4), 227–268. https://doi.org/10.1207/S15327965PLI1104_01
  • Deci, E. L., & Ryan, R. M. (2008). Facilitating optimal motivation and psychological well-being across life’s domains. Canadian Psychology/Psychologie Canadienne, 49(1), 14–23. https://doi.org/10.1037/0708-5591.49.1.14
  • Dhondt, A., Van keer, I., Nijs, S., Van der Putten, A., & Maes, B. (2021). In search of a novel way to analyze early communicative behavior. Augmentative and Alternative Communication, 37(2), 87–101. https://doi.org/10.1080/07434618.2021.1928283
  • Dhondt, A., Van keer, I., van der Putten, A., & Maes, B. (2020). Communicative abilities in young children with a significant cognitive and motor developmental delay. Journal Of Applied Research In Intellectual Disabilities, 33(3), 529–541. https://doi.org/10.1111/jar.12695
  • Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51–74. https://doi.org/10.1016/0891-4222(94)00028-8
  • Frielink, N., Schuengel, C., & Embregts, P. J. C. M. (2018). Autonomy support, need satisfaction, and motivation for support among adults with intellectual disability: Testing a self-determination theory model. American Journal on Intellectual and Developmental Disabilities, 123(1), 33–49. https://doi.org/10.1352/1944-7558-123.1.33
  • Hanzen, G., Waninge, A., Vlaskamp, C., van Nispen, R. M., & van der Putten, A. A. (2018). Participation of adults with visual and severe or profound intellectual disabilities: Analysis of individual support plans. Research in Developmental Disabilities, 83, 132–141. https://doi.org/10.1016/j.ridd.2018.08.012
  • Hasson, F., Keeney, S., & McKenna, H. (2000). Research guidelines for the Delphi survey technique. Journal of Advanced Nursing, 32(4), 1008–1015.
  • Hostyn, I., & Maes, B. (2009). Interaction between persons with profound intellectual and multiple disabilities and their partners: A literature review. Journal of Intellectual & Developmental Disability, 34(4), 296–312. https://doi.org/10.3109/13668250903285648
  • Keeney, S., Hasson, F., & McKenna, H. (2006). Consulting the oracle: Ten lessons from using the Delphi technique in nursing research. Journal of Advanced Nursing, 53(2), 205–212. https://doi.org/10.1111/j.1365-2648.2006.03716.x
  • Lachapelle, Y., Wehmeyer, M. L., Haelewyck, M. C., Courbois, Y., Keith, K. D., Schalock, R., & Walsh, P. N. (2005). The relationship between quality of life and self-determination: An international study. Journal of Intellectual Disability Research, 49(10), 740–744. https://doi.org/10.1111/j.1365-2788.2005.00743.x
  • Linstone, H. A., & Turoff, M. (2002). The Delphi method: Techniques and applications. https://web.njit.edu/~turoff/pubs/delphibook/delphibook.pdf
  • Mietola, R., Miettinen, S., & Vehmas, S. (2017). Voiceless subjects? Research ethics and persons with profound intellectual disabilities. International Journal of Social Research Methodology, 20(3), 263–274. https://doi.org/10.1080/13645579.2017.1287872
  • Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2), 83–87. https://doi.org/10.1111/j.1741-1130.2007.00104.x
  • Neerinckx, H., & Maes, B. (2016). Joint attention behaviours in people with profound intellectual and multiple disabilities: The influence of the context. Journal of Applied Research in Intellectual Disabilities, 29(6), 574–584. https://doi.org/10.1111/jar.12217
  • Nieuwenhuijse, A. M., Willems, D. L., & Olsman, E. (2020). Physicians’ perceptions on quality of life of persons with profound intellectual and multiple disabilities: A qualitative study. Journal of Intellectual & Developmental Disability, 45(2), 176–183. https://doi.org/10.3109/13668250.2019.1580117
  • Nieuwenhuijse, A. M., Willems, D. L., van Goudoever, J. B., Echteld, M. A., & Olsman, E. (2019). Quality of life of persons with profound intellectual and multiple disabilities: A narrative literature review of concepts, assessment methods and assessors. Journal of Intellectual & Developmental Disability, 44(3), 261–271. https://doi.org/10.3109/13668250.2017.1388913
  • Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self-determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850–865. https://doi.org/10.1111/j.1365-2788.2006.00939.x
  • Petry, K., Maes, B., & Vlaskamp, C. (2005). Domains of quality of life of people with profound multiple disabilities: The perspective of parents and direct support staff. Journal of Applied Research in Intellectual Disabilities, 18(1), 35–46. https://doi.org/10.1111/j.1468-3148.2004.00209.x
  • Petry, K., Maes, B., & Vlaskamp, C. (2007). Operationalizing quality of life for people with profound multiple disabilities: A Delphi study. Journal of Intellectual Disability Research, 51(Pt 5), 334–349. https://doi.org/10.1111/j.1365-2788.2006.00882.x
  • Powell, C. (2003). The Delphi technique: Myths and realities. Journal of Advanced Nursing, 41(4), 376–382. https://doi.org/10.1046/j.1365-2648.2003.02537.x
  • Roche, L., Sigafoos, J., Lancioni, G. E., O’Reilly, M. F., & Green, V. A. (2015). Microswitch technology for enabling self-determined responding in children with profound and multiple disabilities: A systematic review. Augmentative and Alternative Communication, 31(3), 246–258. https://doi.org/10.3109/07434618.2015.1024888
  • Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 55(1), 68–78. https://doi.org/10.1037/0003-066X.55.1.68
  • Schalock, R. L., & Verdugo, M. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retardation.
  • Shogren, K. A., Wehmeyer, M. L., & Palmer, S. B. (2017). Causal agency theory. In development of self-determination through the life-course (pp. 55–67). Springer.
  • Skarsaune, S. K., Nese, H., Halvor, M., & Gjermestad, A. (2021). Self-determination: What can we learn from persons with profound intellectual and multiple disabilities? Scandinavian Journal of Disability Research, 23(1), 317–327. https://doi.org/10.16993/sjdr.830
  • Sumsion, T. (1998). The Delphi technique: An adaptive research tool. British Journal of Occupational Therapy, 61(4), 153–156. https://doi.org/10.1177/030802269806100403
  • Talman, L., Wilder, J., Stier, J., & Gustafsson, C. (2019). Staff’s and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilities. Scandinavian Journal of Disability Research, 21(1), 78–88. https://doi.org/10.16993/sjdr.53
  • The United Nations (2006). Convention on the rights of persons with disabilities.
  • van Tuyll van Serooskerken, J. M., Willemen, A. M., de la Croix, A., Embregts, P. J. C. M., & Schuengel, C. (2022). Satisfying basic psychological needs among people with complex support needs: A self-determination theory-guided analysis of primary relatives’ perspectives. Disabilities, 2(2), 330–347. https://doi.org/10.3390/disabilities2020024
  • Wehmeyer, M. L. (1992). Self-determination and the education of students with mental retardation. Education and Training in Mental Retardation, 27(4), 302–314.
  • Wehmeyer, M. L. (1999). A functional model of self-determination: Describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities, 14(1), 53–61. https://doi.org/10.1177/108835769901400107
  • Wehmeyer, M. L. (2005). Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30(3), 113–120. https://doi.org/10.2511/rpsd.30.3.113
  • Wehmeyer, M. L. (2020). Self-determination in adolescents and adults with intellectual and developmental disabilities. Current Opinion in Psychiatry, 33(2), 81–85. https://doi.org/10.1097/YCO.0000000000000576
  • Wehmeyer, M. L., Abery, B. H., Mithaug, D. E., & Stancliffe, R. J. (2003). Theory in self-determination: Foundations for educational practice. Charles C Thomas Publisher.
  • Wehmeyer, M. L., & Garner, N. W. (2003). The impact of personal characteristics of people with intellectual and developmental disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16(4), 255–265. https://doi.org/10.1046/j.1468-3148.2003.00161.x
  • Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behavior of individuals with mental retardation. American Journal on Mental Retardation, 100(6), 632–642.
  • Wehmeyer, M. L., & Schwartz, M. (1998). The relationship between self-determination and quality of life for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33(1), 3–12.
  • Wessels, M. D., Paap, M. C. S., & van der Putten, A. A. J. (2022). The content validity of the behavioural appraisal scales in people with profound intellectual and multiple disabilities: A Delphi study. Journal of Policy and Practice in Intellectual Disabilities. 19(1), 86–101. https://doi.org/10.1111/jppi.12409
  • Wood, W. M., Fowler, C. H., Uphold, N., & Test, D. W. (2005). A review of self-determination interventions with individuals with severe disabilities. Research and Practice for Persons with Severe Disabilities, 30(3), 121–146. https://doi.org/10.2511/rpsd.30.3.121