The missing piece. Physiological data as a factor for identifying emotions of people with profound intellectual and multiple disabilities

References

• Adams, D. and Oliver, C. 2011. The expression and assessment of emotions and internal states in individuals with severe or profound intellectual disabilities. Clinical Psychology Review, 31, 293–306.
   PubMed Web of Science ®Google Scholar
• Axelsson, A. K., Imms, C. and Wilder, J. 2014. Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: Parents’ and personal assistants’ experiences. Disability and Rehabilitation, 36, 2169–2177.
   PubMed Web of Science ®Google Scholar
• Bellamy, G., Croot, L., Bush, A., Berry, H. and Smith, A. 2010. A study to define: Profound and multiple learning disabilities (PMLD). Journal of Intellectual Disabilities: JOID, 14, 221–235.
   PubMedGoogle Scholar
• Bermejo, B. G., Mateos, P. M. and Sánchez-Mateos, J. D. 2014. The emotional experience of people with intellectual disability: An analysis using the international affective pictures system. American Journal on Intellectual and Developmental Disabilities, 119, 371–384.
   PubMedGoogle Scholar
• Bradley, M. M., Codispoti, M., Cuthbert, B. and Lang, P. J. 2001. Emotion and motivation I: Defensive and appetitive reactions in picture processing. Emotion (Washington, D.C.), 1, 276–298.
   PubMed Web of Science ®Google Scholar
• Bradley, M. M. and Lang, P. J. 2000. Measuring emotion: Behavior, feeling, and physiology. In: R. Lane and L. Nadel, eds., Cognitive neuroscience of emotion. New York: Oxford University Press, pp.242–276.
   Google Scholar
• Brady, N. C., Fleming, K., Thiemann-Bourque, K., Olswang, L., Dowden, P., Saunders, M. D. and Marquis, J. 2012. Development of the communication complexity scale. American Journal of Speech-Language Pathology, 21, 16–28.
   PubMed Web of Science ®Google Scholar
• Domínguez-Jiménez, J. A., Campo-Landines, K. C., Martínez-Santos, J. C., Delahoz, E. J. and Contreras-Ortiz, S. H. 2020. A machine learning model for emotion recognition from physiological signals. Biomedical Signal Processing and Control, 55, 101646.
   Web of Science ®Google Scholar
• ELAN (Version 6.0), 2020. Nijmegen: Max Planck Institute for Psycholinguistics, The Language Archive. Available at: <https://archive.mpi.nl/tla/elan> [accessed 31 May 2022]
   Google Scholar
• Empatica S.R.L., 2018. E4 wristband from empatica: User’s manual. Available at: <https://empatica.app.box.com/v/E4-User-Manual> [accessed 31 May 2022].
   Google Scholar
• Engelhardt, M., Krämer, T., Marzini, M., Sansour, T. and Zentel, P. 2020. Communication assessment in people with PIMD. Evaluating the use of the INSENSION Questionnaire – Longform (InQL). Psychoeducational Assessment, Intervention and Rehabilitation, 2, 1–14.
   Google Scholar
• Felce, D. and Perry, J. 1995. Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16, 51–74.
   PubMed Web of Science ®Google Scholar
• Frederiks, K., Sterkenburg, P., Barakova, E. and Feijs, L. 2019. The effects of a bioresponse system on the joint attention behaviour of adults with visual and severe or profound intellectual disabilities and their affective mutuality with their caregivers. Journal of Applied Research in Intellectual Disabilities: JARID, 32, 890–900.
   PubMedGoogle Scholar
• Grimmer, J., Roberts, M. E. and Stewart, B. M. 2021. Machine learning for social science: An agnostic approach. Annual Review of Political Science, 24, 395–419.
   Web of Science ®Google Scholar
• Hammann, T. 2022. Forschungsethische Diskussion im Kontext komplexer Behinderung. Zeitschrift Für Heilpädagogik, 73, 382–393.
   Google Scholar
• Hammann, T. and Engelhardt, M. 2022. Lebensqualität und schwere und mehrfache Behinderung. In: P. Zentel, ed. Lebensqualität und geistige Behinderung: Theorien, Diagnostik, Konzepte. Stuttgart: Kohlhammer Verlag, pp.223–241.
   Google Scholar
• Holle, H. and Rein, R. 2015. Easydiag: A tool for easy determination of interrater agreement. Behavior Research Methods, 47, 837–847.
   PubMed Web of Science ®Google Scholar
• Horner, R. H., Carr, E. G., Halle, J., McGee, G., Odom, S. and Wolery, M. 2005. The use of single-subject research to identify evidence-based practice in special education. Exceptional Children, 71, 165–179.
   Web of Science ®Google Scholar
• Hostyn, I. and Maes, B. 2009. Interaction between persons with profound intellectual and multiple disabilities and their partners: A literature review. Journal of Intellectual & Developmental Disability, 34, 296–312.
   PubMed Web of Science ®Google Scholar
• Janko, V., Rešçiç, N., Mlakar, M., Drobnič, V., Gams, M., Slapničar, G., Gjoreski, M., Bizjak, J., Marinko, M. and Luštrek, M. 2018. A new frontier for activity recognition: The Sussex-Huawei locomotion challenge, Proceedings of the 2018 ACM International Joint Conference and 2018 International Symposium on Pervasive and Ubiquitous Computing and Wearable Computers, October 8 - 12, 2018. Singapore: Association for Computing Machinery, pp.1511–1520.
   Google Scholar
• Krämer, T. and Zentel, P. 2020. Expression of emotions of people with profound intellectual and multiple disabilities. A single-case design including physiological data. Psychoeducational Assessment, Intervention and Rehabilitation, 2, 15–29.
   Google Scholar
• Landis, J. R. and Koch, G. G. 1977. The measurement of observer agreement for categorical data. Biometrics, 33, 159–174.
   PubMed Web of Science ®Google Scholar
• Lazarus, R. S. 1991. Progress on a cognitive-motivational-relational theory of emotion. The American Psychologist, 46, 819–834.
   PubMed Web of Science ®Google Scholar
• Lima, M., Silva, K., Amaral, I., Magalhães, A. and Sousa, L. d. 2013. Beyond behavioural observations: A deeper view through the sensory reactions of children with profound intellectual and multiple disabilities. Child: Care, Health and Development, 39, 422–431.
   PubMed Web of Science ®Google Scholar
• Lyons, G. S. 2005. The Life Satisfaction Matrix: An instrument and procedure for assessing the subjective quality of life of individuals with profound multiple disabilities. Journal of Intellectual Disability Research: JIDR, 49, 766–769.
   PubMed Web of Science ®Google Scholar
• Lyons, G. S., De Bortoli, T. and Arthur-Kelly, M. 2017. Triangulated proxy reporting: A technique for improving how communication partners come to know people with severe cognitive impairment. Disability and Rehabilitation, 39, 1814–1820.
   PubMed Web of Science ®Google Scholar
• Lyons, G. S., Walla, P. and Arthur-Kelly, M. 2013. Towards improved ways of knowing children with profound multiple disabilities: Introducing startle reflex modulation. Developmental Neurorehabilitation, 16, 340–344.
   PubMed Web of Science ®Google Scholar
• Maes, B., Lambrechts, G., Hostyn, I. and Petry, K. 2007. Quality-enhancing interventions for people with profound intellectual and multiple disabilities. Journal of Intellectual & Developmental Disability, 32, 163–178.
   PubMed Web of Science ®Google Scholar
• Marteau, F., Dalmat-Kasten, M., Kaye, K., Castillo, M.C. and Montreuil, M. 2016. Exploratory study of a scale of emotional state for children with intellectual and multiple disabilities (EREEP). Child & Family Behavior Therapy, 38, 1–14.
   Web of Science ®Google Scholar
• McCarthy, C., Pradhan, N., Redpath, C. and Adler, A. 2016. Validation of the Empatica E4 wristband, 2016 IEEE EMBS International Student Conference (ISC). 29–31 May 2016, Ottowa, Canada.
   Google Scholar
• Mietola, R., Miettinen, S. and Vehmas, S. 2017. Voiceless subjects? Research ethics and persons with profound intellectual disabilities. International Journal of Social Research Methodology, 20, 263–274.
   Web of Science ®Google Scholar
• Mohr, L. 2011. Schwerste Behinderung und theologische Anthropologie. Oberhausen: ATHENA-Verlag.
   Google Scholar
• Moors, A., Ellsworth, P. C., Scherer, K. R. and Frijda, N. H. 2013. Appraisal theories of emotion: State of the art and future development. Emotion Review, 5, 119–124.
   Web of Science ®Google Scholar
• Munde, V., Vlaskamp, C., Vos, P., Maes, B. and Ruijssenaars, W. 2012. Physiological measurements as validation of alertness observations: An exploratory case study of three individuals with profound intellectual and multiple disabilities. Intellectual and Developmental Disabilities, 50, 300–310.
   PubMed Web of Science ®Google Scholar
• Nakken, H. and Vlaskamp, C. 2007. A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4, 83–87.
   Google Scholar
• Nieuwenhuijse, A. M., Willems, D. L., van Goudoever, J. B., Echteld, M. A. and Olsman, E. 2017. Quality of life of persons with profound intellectual and multiple disabilities: A narrative literature review of concepts, assessment methods and assessors. Journal of Intellectual and Developmental Disability, 44, 261–271.
   Web of Science ®Google Scholar
• Nieuwenhuijse, A. M., Willems, D. L., van Goudoever, J. B. and Olsman, E. 2022. The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: A qualitative study. International Journal of Developmental Disabilities, 68, 190–197.
   PubMed Web of Science ®Google Scholar
• Petry, K. and Maes, B. 2006. Identifying expressions of pleasure and displeasure by persons with profound multiple disabilities. Journal of Intellectual & Developmental Disability, 31, 28–38.
   PubMed Web of Science ®Google Scholar
• Petry, K. and Maes, B. 2009. Quality of life: People with profound intellectual and multiple disabilities. In: J. Pawlyn and S. Carnaby, eds. Profound intellectual and multiple disabilities. Oxford, UK: Wiley-Blackwell. pp.15–36.
   Google Scholar
• Russell, J. A. 1980. A circumplex model of affect. Journal of Personality and Social Psychology, 39, 1161–1178.
   Web of Science ®Google Scholar
• Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., Keith, K. D. and Parmenter, T. 2002. Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40, 457–470.
   PubMedGoogle Scholar
• U.S. Department of Education, 2017. What Works Clearinghouse™. Standards handbook. Version 4.0. Available at: <https://ies.ed.gov/ncee/wwc/Docs/referenceresources/wwc_standards_handbook_v4.pdf> [accessed 31 May 2022].
   Google Scholar
• van der Putten, A. A. J., Haar, A., ter, Maes, B. and Vlaskamp, C. 2018. Tausendfüßler: Erkenntnisse zur Unterstützung von Menschen mit (sehr) schweren geistigen und mehrfachen Behinderungen - ein Literatur-Review. Teilhabe, 57, 55–62.
   Google Scholar
• van der Putten, A. A. J. and Vlaskamp, C. 2011. Day services for people with profound intellectual and multiple disabilities: An analysis of thematically organized activities. Journal of Policy and Practice in Intellectual Disabilities, 8, 10–17.
   Web of Science ®Google Scholar
• Vos, P., De Cock, P., Munde, V., Petry, K., Van Den Noortgate, W. and Maes, B. 2012. The tell-tale: What do heart rate; skin temperature and skin conductance reveal about emotions of people with severe and profound intellectual disabilities? Research in Developmental Disabilities, 33, 1117–1127.
   PubMed Web of Science ®Google Scholar
• Vos, P., De Cock, P., Petry, K., van den Noortgate, W. and Maes, B. 2010. Do you know what i feel? A first step towards a physiological measure of the subjective well-being of persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 23, 366–378.
   Web of Science ®Google Scholar
• Vos, P., De Cock, P., Petry, K., van den Noortgate, W. and Maes, B. 2013. See me, feel me. Using physiology to validate behavioural observations of emotions of people with severe or profound intellectual disability. Journal of Intellectual Disability Research: JIDR, 57, 452–461.
   PubMed Web of Science ®Google Scholar
• Williams, J. R. 2008. The declaration of Helsinki and public health. Bulletin of the World Health Organization, 86, 650–652.
   PubMed Web of Science ®Google Scholar
• World Health Organization, 2001. International classification of functioning disability and health (ICF). World Health Organization. Available at: <>
   Google Scholar
• World Health Organization, 2019. ICD-11. International classification of diseases 11th revision: 6A00.3 Disorder of intellectual development, profound. Available at: <https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1017992057> [accessed 31 May 2022].
   Google Scholar