Résumés
Abstract
Background: People with intellectual and developmental disabilities (IDD) experience inequitable health care and outcomes. Pre-licensure nursing programs do not adequately prepare student nurses to care for this population.
Purpose: To identify priorities for pre-licensure nursing curriculum content about nursing care for people with IDD.
Methods: A three-round, mixed-methods Delphi study, inclusively designed, was administered to nurses and people with IDD. Data were analyzed using descriptive statistics and content analysis.
Findings: A total of 16 nurses and 16 people with IDD participated in this study. At the end of the third survey round, consensus had been reached for 77% (10/13) of items under the category of person-centred care, 100% (6/6) of items about communication, 100% (5/5) of items about advocacy, 85.7% (6/7) of items about health and diagnoses, 100% (4/4) of items about collaboration, and 100% (3/3) of items about decision-making.
Conclusion: These findings provide nursing faculty with direction for action in IDD-inclusive nursing curriculum. Future studies are needed to explore teaching and learning methods for further implementation.
Keywords:
- intellectual and developmental disabilities,
- nursing curriculum,
- inclusive health research,
- Delphi
Résumé
Contexte : Les personnes avec des incapacités intellectuelles et développementales font l’expérience de soins et de résultats de santé inéquitables. Les programmes de formation en sciences infirmières menant à l’obtention du droit d’exercer la profession infirmière ne préparent pas adéquatement les étudiantes et étudiants à prendre soin de cette population.
Objectif : Identifier les priorités de contenu pour un programme d’études en sciences infirmières menant à l’obtention du droit d’exercer au sujet des soins à prodiguer aux personnes ayant des incapacités intellectuelles et développementales.
Méthodes : Une étude Delphi à méthodes mixtes en trois tours conçue pour favoriser l’inclusion a été menée auprès d’infirmières et infirmiers et de personnes ayant des incapacités intellectuelles et développementales. Les données ont été analysées en utilisant des statistiques descriptives et une analyse du contenu.
Résultats : Les participantes et participants à cette étude comprenaient 16 infirmières et infirmiers et 16 personnes ayant une incapacité intellectuelle ou développementale. À la fin du troisième tour de sondage, un consensus a émergé pour 77 % (10/13) des énoncés sous la catégorie des soins centrés sur la personne, 100 % (6/6) des énoncés au sujet de la communication, 100 % (5/5) des énoncés sur la défense des droits et intérêts, 85,7 % (6/7) des énoncés au sujet de la santé et des diagnostics, 100 % (4/4) des énoncés sur la collaboration et 100 % (3/3) des énoncés sur la prise de décisions.
Conclusion : Ces résultats fournissent aux membres du corps professoral des écoles de sciences infirmières des mesures à prendre dans les programmes d’études pour assurer l’inclusion des personnes ayant des incapacités intellectuelles et développementales. D’autres études sont nécessaires pour explorer des méthodes d’enseignement et d’apprentissage pour la poursuite de la mise en œuvre des mesures.
Parties annexes
Bibliography
- Ailey, S. H., Bathje, M., Tichá, R., Abery, B., Khuu, B. K., & Angel, L. (2024). Health professionals’ education related to people with intellectual and developmental disabilities: A scoping review. Journal of Applied Research in Intellectual Disabilities, 37(3), e13208. https://doi.org/10.1111/jar.13208
- Ankam, N. S., Bosques, G., Sauter, C., Stiens, S., Therattil, M., Williams, F. H., Atkins, C., & Mayer, R. (2019). Competency-based curriculum development to meet the needs of people with disabilities: A call to action. Academic Medicine, 94(6), 781–788. http://doi.org/10.1097/ACM.0000000000002686
- Bengtsson, M. (2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open, 2, 8–14. https://doi.org/10.1016/j.npls.2016.01.001
- Bonell, S., Underwood, L., Radhakrishnan, V., & McCarthy, J. (2012). Experiences of mental health services by people with intellectual disabilities from different ethnic groups: A Delphi consultation. Journal of Intellectual Disability Research, 56(9), 902–909. https://doi.org/10.1111/j.1365-2788.2011.01494.x
- Campbell, S., Greenwood, M., Prior, S., Shearer, T., Walkem, K., Young, S., Bywaters, D., & Walker, K. (2020). Purposive sampling: Complex or simple? Research case examples. Journal of Research in Nursing, 25(8) 652–661. https://doi.org/10.1177/1744987120927206
- Cashin, A., Pracilio, A., Buckley, T., Kersten, M., Trollor, J., Morphet, J., Howie, V., Griffin, K., & Wilson, N. J. (2022). A survey of registered nurses’ educational experiences and self-perceived capability to care for people with intellectual disability and/or autism spectrum disorder. Journal of Intellectual & Developmental Disability, 47(3), 227–239. https://doi.org/10.3109/13668250.2021.1967897
- Chalmers, J., & Armour, M. (2019). The Delphi technique. In P. Liamputtong (Ed.), Handbook of research methods in health social sciences (pp. 715–735). Springer. https://doi.org/10.1007/978-981-10-5251-4_99
- Cooper, S. A., McLean, G., Guthrie, B., McConnachie, A., Mercer, S., Sullivan, F., & Morrison, J. (2015). Multiple physical and mental health comorbidity in adults with intellectual disabilities: Population-based cross-sectional analysis. BMC Family Practice, 16, Article 110. https://doi.org/10.1186/s12875-015-0329-3
- Corby, D., & Sweeney, M. R. (2017). Researchers’ experiences and lessons learned from doing mixed-methods research with a population with intellectual disabilities: Insights from the SOPHIE study. Journal of Intellectual Disabilities, 23(2), 250–265. https://doi.org/10.1177/1744629517747834
- Dee-Price, B.-J. M. (2020). Social researchers and participants with intellectual disabilities and complex communication (access) needs. Whose capacity? Whose competence? Research and Practice in Intellectual and Developmental Disabilities, 7(2), 132–143. https://doi.org/10.1080/23297018.2020.1788418
- de Kuijper, G. M., Den Besten-van Ravenswaaij, J. J. C., Hoekstra, P. J., & de Bildt, A. (2023). Preferred outcome measures in treatments for challenging behaviour in individuals with intellectual disabilities: Results of an inclusive Delphi method. Journal of Applied Research in Intellectual Disabilities, 36(2), 374–384. https://doi.org/10.1111/jar.13067
- Don, A., Rogal-Black, L., Murray, M. A., Merriam, H., McCabe, J., Chowdhury, S., Gessese, S., Mclean, J., Zappavigna, K., Cajmer, O., & Peters, A. (2025). Pre-licensure nursing education about care of persons with intellectual and developmental disabilities: A scoping review. [Manuscript submitted for publication].
- Edwards, A. P., Cron, S., & Shonk, C. (2022). Comparative effects of disability education on attitudes, knowledge and skills of baccalaureate nursing students. Nurse Education in Practice, 61, 103330. https://doi.org/10.1016/j.nepr.2022.103330
- Foucault, M. (1978). The history of sexuality: Volume 1 – an introduction (R. Hurley, Trans.). Random House.
- Foucault, M. (1998). Sex, power, and the politics of identity (R. Hurley, Trans.). In P. Rabinow (Ed.), Michel Foucault: Ethics, subjectivity, and truth (pp. 163–173). The New Press.
- Frankena, T. K., Naaldenberg, J., Cardol, M., Garcia Iriarte, E., Buchner, T., Brooker, K., Embregts, P., Joosa, E., Crowther, F., Fudge Schormans, A., Schippers, A., Walmsley, J., O’Brien, P., Linehan, C., Northway, R., van Schrojenstein Lantman-de Valk, H., & Leusink, G. (2019). A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research, 63(1), 1–11. https://doi.org/10.1111/jir.12486
- Gok Metin, Z., & Yildiz, A. N. (2023). Update on occupational health nursing through 21st century requirements: A three-round Delphi study. Nurse Education Today, 120, 105657. https://doi.org/10.1016/j.nedt.2022.105657
- Havercamp, S. M., Barnhart, W. R., Robinson, A. C., & Whalen Smith, C. N. (2021). What should we teach about disability? National consensus on disability competencies for health care education. Disability and Health Journal, 14(2), 100989. https://doi.org/10.1016/j.dhjo.2020.100989
- Hosking, F. J., Carey, I. M., Shah, S. M., Harris, T., DeWilde, S., Beighton, C., & Cook, D. G. (2016). Mortality among adults with intellectual disability in England: Comparisons with the general population. American Journal of Public Health, 106(8), 1483–1490. https://doi.org/10.2105/AJPH.2016.303240
- Howie, V. A., Denman, D., Wilson, N. J., & Lewis, P. (2022). Standards for practice in intellectual and developmental disability nursing: A Delphi study. Collegian, 29(3), 311–319. https://doi.org/10.1016/j.colegn.2021.08.008
- Ilkhani, M., Glasper, A., & Jarrett, N. (2016). Nursing curricula relating to care for disabled children: Literature review. International Nursing Review, 63(1), 78–83. https://doi.org/10.1111/inr.12203
- Jünger, S. (2023). Delphi studies in the health sciences: Epistemic potentials and challenges. In M. Niederberger & O. Renn (Eds.), Delphi methods in the social and health sciences (pp. 51–74). Springer. https://doi.org/10.1007/978-3-658-38862-1_3
- Jünger, S., Payne, S. A., Brine, J., Radbruch, L., & Brearley, S. G. (2017). Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliative Medicine, 31(8), 684–706. https://doi.org/10.1177/0269216317690685
- Keeney, S., Hasson, F., & McKenna, H. (2011). The Delphi technique in nursing and health research. John Wiley & Sons. https://doi.org/10.1002/9781444392029.ch1
- Kidney, C. A., & McDonald, K. E. (2014). A toolkit for accessible and respectful engagement in research. Disability & Society, 29(7), 1013–1030. https://doi.org/10.1080/09687599.2014.902357
- Kronk, R., Colbert, A. M., Smeltzer, S. C., & Blunt, E. (2020). Development of prelicensure nursing competencies in caring for people with disabilities through Delphi methodology. Nurse Educator, 45(3), E21–E25. https://doi.org/10.1097/NNE.0000000000000712
- Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. SAGE Publications.
- Martin, A.-M., Divane, S., Twomey, S., O’Neill, L., McCarthy, J., Egan, C., Dalton, C., & Caples, M. (2021). Don’t mention the diet! A health promotion initiative to support healthy diet and lifestyle decision-making by people with intellectual disability. British Journal of Learning Disabilities, 49(4), 475–481. https://doi.org/10.1111/bld.12382
- McPherson, S., Reese, C., & Wendler, M. C. (2018). Methodology update: Delphi studies. Nursing Research, 67(5), 404–410. https://doi.org/10.1097/NNR.0000000000000297
- Nasa, P., Jain, R., & Juneja, D. (2021). Delphi methodology in healthcare research: How to decide its appropriateness. World Journal of Methodology, 11(4), 116–129. https://doi.org/10.5662/wjm.v11.i4.116
- National Autism Resources. (n.d.). The Picture Exchange Communication System (PECS®). https://nationalautismresources.com/the-picture-exchange-communication-system-pecs/
- Nicmanis, M. (2024). Reflexive content analysis: An approach to qualitative data analysis, reduction, and description. International Journal of Qualitative Methods, 23. https://doi.org/10.1177/16094069241236603
- Ouellette-Kuntz, H., Shooshtari, S., Balogh, R., & Martens, P. (2015). Understanding information about mortality among people with intellectual and developmental disabilities in Canada. Journal of Applied Research in Intellectual Disabilities, 28(5), 423–435. https://doi.org/10.1111/jar.12195
- Pelleboer-Gunnink, H. A., Van Oorsouw, W. M. W. J., Van Weeghel, J., & Embregts, P. J. C. M. (2017). Mainstream health professionals’ stigmatising attitudes towards people with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research, 61(5), 411–434. https://doi.org/10.1111/jir.12353
- Rasmussen, A. V., Jensen, R. H., Karlsson, L. E., & Mose, L. S. (2023). Consensus recommendations on the role of nurses in the care of headache patients: Protocol for a European e-Delphi study. BMC Nursing, 22, Article 52. https://doi.org/10.1186/s12912-023-01211-1
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. (2020). Overview of responses to the health issues paper. https://disability.royalcommission.gov.au/publications/health-care-people-cognitive-disability
- Salgado, T. M., Fedrigon, A., Riccio Omichinski, D., Meade, M. A., & Farris, K. B. (2018). Identifying medication management smartphone app features suitable for young adults with developmental disabilities: Delphi consensus study. JMIR mHealth and uHealth, 6(5), e129. https://doi.org/10.2196/mhealth.9527
- Shooshtari, S., Brownell, M., Mills, R. S. L., Dik, N., Yu, D. C. T., Chateau, D., Burchill, C. A., & Wetzel, M. (2017). Comparing health status, health trajectories and use of health and social services between children with and without developmental disabilities: A population-based longitudinal study in Manitoba. Journal of Applied Research in Intellectual Disabilities, 30(4), 584–601. https://doi.org/10.1111/jar.12253
- Smeltzer, S. C., Robinson-Smith, G., Dolen, M. A., Duffin, J. M., & Al-Maqbali, M. (2010). Disability-related content in nursing textbooks. Nursing Education Perspectives, 31(3), 148–155.
- Smith-Merry, J. (2017). Inclusive disability research. In P. Liamputtong (Ed.), Handbook of research methods in health social sciences (pp. 1–19). Springer. https://doi.org/10.1007/978-981-10-2779-6_129-1
- Trollor, J. N., Eagleson, C., Turner, B., Salomon, C., Cashin, A., Iacono, T., Goddard, L., & Lennox, N. (2016). Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught. Nurse Education Today, 45, 72–79. https://doi.org/10.1016/j.nedt.2016.06.011
- Trollor, J. N., Srasuebkul, P., Xu, H., & Howlett, S. (2017). Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open, 7(2), e013489. https://doi.org/10.1136/bmjopen-2016-013489
- Veugelers, R., Gaakeer, M. I., Patka, P., & Huijsman, R. (2020). Improving design choices in Delphi studies in medicine: The case of an exemplary physician multi-round panel study with 100% response. BMC Medical Research Methodology, 20, Article 156. https://doi.org/10.1186/s12874-020-01029-4
- Warshawski, S. (2025). Nursing students’ perceived knowledge, attitudes, and preparedness to care for people with intellectual disabilities: A mixed methods study. Nurse Education Today, 153, 106821. https://doi.org/10.1016/j.nedt.2025.106821
- Wnuczek, S. (2025). Analiza sytuacji przygotowania osób z niepełnosprawnością intelektualną do śmierci bliskich i przeżywania żałoby po stracie. Przyczynek do badań [Analysis of the situation of preparing people with intellectual disabilities for the death of loved ones and experiencing mourning after loss: A contribution to research]. Zbliżenia Cywilizacyjne, 21(1), 33–51. https://doi.org/10.21784/ZC.2025.002
- World Health Organization. (2011). World report on disability. https://www.who.int/publications/i/item/9789241564182
- World Health Organization. (2022). Global report on health equity for persons with disabilities. https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/global-report-on-health-equity-for-persons-with-disabilities