Background: There is limited knowledge
about obsessive-compulsive disorder (OCD) in people with intellectual
disabilities (IDs). This paper describes the manifestation of
compulsive behaviors associated with OCD at the behavioral level in people
with ID in institutionalized settings. The aim was to gain nuanced insight into
appropriate understanding and classification in this specific context, and
derive implications for research and practice.Methods: Individual cases of people with ID (n = 7) were studied to assess compulsive
symptoms through two days of on-site
observation of the person with ID within the institution, guided group discussions (n = 28), and semi-structured interviews
with key informants and caregivers of the person with ID (n = 20). Caregiver
ratings of the compulsive behavior checklist were compiled. Data were analyzed using qualitative content analysis.Results: All forms of OCD were present. Characteristics of
compulsive behaviors in people with ID
at the behavioral level included？less complex and more obvious compulsive acts, immediate responses,
signs of tension, motor restlessness, facial expression changes, repetition, need for predictability, time-consuming behaviors, and aggressive
reactions when these acts were interrupted. Some of the compulsive behaviors
corresponded to the ICD-11 OCD code 6B20, and others to compulsions as a psychological symptom
(MB23.4). Conclusions:
References
[1]
Maulik, P.K., Mascarenhas, M.N., Mathers, C.D., Dua, T. and Saxena, S. (2011) Prevalence of Intellectual Disability: A Meta-Analysis of Population-Based Studies. Research in Developmental Disabilities, 32, 419-436. https://doi.org/10.1016/j.ridd.2010.12.018
[2]
McKenzie, K., Milton, M., Smith, G. and Ouellette-Kuntz, H. (2016) Systematic Review of the Prevalence and Incidence of Intellectual Disabilities: Current Trends and Issues. Current Developmental Disorders Reports, 3, 104-115. https://doi.org/10.1007/s40474-016-0085-7
[3]
Patel, D.R., Cabral, M.D., Ho, A. and Merrick, J. (2020) A Clinical Primer on Intellectual Disability. Translational Pediatrics, 9, S23-S35. https://doi.org/10.21037/tp.2020.02.02
[4]
World Health Organization (2021) International Statistical Classification of Diseases and Related Health Problems. 11th Edition, WHO, Geneva. https://icd.who.int/en
[5]
Deb, S., Perera, B., Krysta, K., Ozer, M., Bertelli, M., Novell, R., Wieland, J. and Sappok, T. (2022) The European Guideline on the Assessment and Diagnosis of Psychiatric Disorders in Adults with Intellectual Disabilities. The European Journal of Psychiatry, 36, 11-25. https://doi.org/10.1016/j.ejpsy.2021.10.002
[6]
Nieuwenhuis, J.G., Noorthoorn, E.O., Nijman, H.L.I., Naarding, P. and Mulder, C.L. (2017) A Blind Spot? Screening for Mild Intellectual Disability and Borderline Intellectual Functioning in Admitted Psychiatric Patients: Prevalence and Associations with Coercive Measures. PLOS ONE, 12, e0168847. https://doi.org/10.1371/journal.pone.0168847
[7]
Nieuwenhuis, J.G., Lepping, P., Mulder, N.L., Nijman, H.L.I. and Veereschild, M. Noorthoorn, E.O. (2021) Increased Prevalence of Intellectual Disabilities in Higher-Intensity Mental Healthcare Settings. British Journal of Psychiatry Open, 7, e83. https://doi.org/10.1192/bjo.2021.28
[8]
Fullana, M.A., Vilagut, G., Rojas-Farreras, S., Mataix-Cols, D., Graaf, R., Demyttenaere, K., Haro, J.M., Girolamo, G., Lépine, J.P. and Matschinger, H. (2010) Obsessive-Compulsive Symptom Dimensions in the General Population: Results from an Epidemiological Study in Six European Countries. Journal of Affective Disorders, 124, 291-299. https://doi.org/10.1016/j.jad.2009.11.020
[9]
Ruscio, A.M., Stein, D.J., Chiu, W.T. and Kessler, R.C. (2010) The Epidemiology of Obsessive-Compulsive Disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15, 53-63. https://doi.org/10.1038/mp.2008.94
[10]
Vitiello, B., Spreat, S. and Behar, D. (1989) Obsessive-Compulsive Disorder in Mentally Retarded Patients. Journal of Nervous and Mental Disease, 177, 232-236. https://doi.org/10.1097/00005053-198904000-00007
[11]
Deb, S., Thomas, M. and Bright, C. (2001) Mental Disorder in Adults with Intellectual Disability. Prevalence of Functional Psychiatric Illness among a Community-Based Population Aged between 16 and 64 Years. Journal of Intellectual Disability Research, 45, 495-505. https://doi.org/10.1046/j.1365-2788.2001.00374.x
[12]
Cooper, S.-A., Smiley, E., Morrison, J., Williamson, A. and Allan, L. (2007) Mental Ill-Health in Adults with Intellectual Disabilities: Prevalence and Associated Factors. The British Journal of Psychiatry, 190, 27-35. https://doi.org/10.1192/bjp.bp.106.022483
[13]
Seidel, M. (2019) Compulsions and Obsessive-Compulsive Disorders. In: Sappok T., Ed., Compulsions and Obsessive-Compulsive Disorders, Kohlhammer, Stuttgart, 139-145.
[14]
Barnhill, J. (2011) Obsessive-Compulsive Disorders or Not: Differential Diagnosis of Repetitive Behaviors among Individuals with Intellectual and Developmental Disorders. In: Selek, S., Ed., Obsessive-Compulsive Disorders or Not: Differential Diagnosis of Repetitive Behaviors among Individuals with Intellectual and Developmental Disorders, Intechopen, Rijeka, 37-68. https://doi.org/10.5772/19109
[15]
Sappok, T. and Zepperitz, S. (2019) The Age of Feelings: On the Importance of Emotional Development in Intellectual Disabilities. Hogrefe, Bern.
[16]
Matson, J.L. and Dempsey, T. (2009) The Nature and Treatment of Compulsions, Obsessions, and Rituals in People with Developmental Disabilities. Research in Developmental Disabilities, 30, 603-611. https://doi.org/10.1016/j.ridd.2008.10.001
[17]
Schmidt, H. and Meir, S. (2014) Structural and Methodological Peculiarities in Diagnostics of Mentally Retarded Persons. In: Schanze, C., Ed., Structural and Methodological Peculiarities in Diagnostics of Mentally Retarded Persons. A Work and Practice Guide for Physicians, Psychologists, Currative Nurses, and Pedagogues, Schattauer, Stuttgart, 30-35.
[18]
Goodman, W.K., Price, L.H., Rasmussen, S.A., Mazure, C., Fleischmann, R.L., Hill, C.L., Heninger, G.R. and Charney, D.S. (1989) The Yale-Brown Obsessive Compulsive Scale. Development, Use, and Reliability. Archive of General Psychiatry, 46, 1006-1011. https://doi.org/10.1001/archpsyc.1989.01810110048007
[19]
López-Pina, J.A., Sánchez-Meca, J., López-López, J.A., Marín-Martínez, F., Núnez-Núnez, R.M., Rosa-Alcázar, A.I., Gómez-Conesa, A. and Ferrer-Requena, J. (2015) The Yale-Brown Obsessive Compulsive Scale: A Reliability Generalization Meta-Analysis. Assessment, 22, 619-628. https://doi.org/10.1177/1073191114551954
[20]
Gedye, A. (1992) Recognizing Obsessive-Compulsive Disorder in Clients with Developmental Disabilities. The Habilitative Mental Healthcare Newsletter, 11, 73-77.
[21]
Fineberg, N.A., Hollander, E., Pallanti, S., Walitza, S., Grünblatt, E., Dell’Osso, B.M., Albert, U., Geller, D.A., Brakoulias, V. and Reddy, Y.J. (2020) Clinical Advances in Obsessive-Compulsive Disorder: A Position Statement by the International College of Obsessive-Compulsive Spectrum Disorders. International Clinical Psychopharmacology, 35, 173-193. https://doi.org/10.1097/YIC.0000000000000314
[22]
National Institute for Health and Care Excellence (2005) Obsessive-Compulsive Disorder and Body Dysmorphic Disorder: Treatment. Clinical Guideline (CG31). NICE Guideline.
[23]
Reddy, Y.J., Sundar, A.S., Narayanaswamy, J.C. and Math, S.B. (2017) Clinical Practice Guidelines for Obsessive-Compulsive Disorder. Indian Psychiatry Journal, 59, 173-193. https://doi.org/10.4103/0019-5545.196976
[24]
Voderholzer, U., Favreau, M., Rubart, A., Staniloiu, A., Wahl-Kordon, A., Zurowski, B. and Kathmann, N. (2022) Treatment of Obsessive-Compulsive Disorder: Recommendations from the Revised S3 Guideline on Obsessive-Compulsive Disorder. Der Nervenarzt, 93, 678-687. https://doi.org/10.1007/s00115-022-01336-9
[25]
National Institute for Health and Care Excellence (2015) Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges (NG11). NICE Guideline.
[26]
National Institute for Health and Care Excellence (2016) Mental Health Problems in People with Learning Disabilities: Prevention, Assessment and Management (NG54). NICE Guideline.
[27]
Schützwohl, M. and Sappok, T. (2020) Mental Health in People with Intellectual Disabilities. Der Nervenarzt, 91, 271-281. https://doi.org/10.1007/s00115-020-00878-0
[28]
Fletcher, R.J., Barnhill, J. and Cooper, S.-A. (2018) Diagnostic Manual-Intellectual Disability (DM-ID-2): Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability. NADD Press, Kingston.
[29]
Priya, A. (2021) Case Study Methodology of Qualitative Research: Key Attributes and Navigating the Conundrums in Its Application. Sociological Bulletin, 70, 94-110. https://doi.org/10.1177/0038022920970318
[30]
Kuckartz, U. and Radiker, S. (2023) Qualitative Content Analysis. Methods, Practice and Software. SAGE, London.
[31]
Grüter, L. (2024) Obsessive-Compulsive Disorder in People with Learning Disabilities: A Qualitative Study of Caregivers’ Challenges and Strategies Practiced in Institutionalized Settings. Insights into Learning Disabilities, 21, 153-183.
[32]
Kiegelmann, M. (2020) Research Ethics. In: Mey, G. and Mruck, K., Eds., Research Ethics, Springer, Wiesbaden, 382-394.
[33]
Dins, T. and Keeley, C. (2022) Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities. International Journal of Environmental Research and Public Health, 19, Article 16874. https://doi.org/10.3390/ijerph192416874
[34]
Deutsche Forschungsgemeinschaft (2022) Guidelines for Safeguarding Good Research Practice. Code of Conduct.
[35]
Deutsche Interdisziplinare Gesellschaft Zur Forderung Der Forschung für Menschen Mit Geistiger Behinderung (2020) Research Ethical Issues in the Context of So-Called Intellectual and/or Multiple Disabilities: A Reflection Paper.
[36]
Vogel, S. (2022) Group Discussion. In: Baur, N. and Blasius, J., Eds., Group Discussion, Springer, Wiesbaden, 913-919.
[37]
Misoch, S. (2019) Qualitative Interviews. De Gruyter, Oldenbourg. https://doi.org/10.1515/9783110545982
[38]
Helfferich, C. (2022) Guideline and Expert Interviews. In: Baur, N. and Blasius, J., Eds., Guideline and Expert Interviews, Springer, Wiesbaden, 875-892.
[39]
Thierbach, C. and Petschick, G. (2022) Observation. In: Baur, N. and Blasius, J., Eds., Observation, Springer, Wiesbaden, 855-866.
[40]
Bienstein, P. (n.d.) German Version of the Compulsive Behavior Checklist (Gedye, 1992) for People with Intellectual Disabilities for Internal Use. Faculty of Rehabilitation Sciences, Technical University Dortmund, Dortmund. (Unpublished)
[41]
Bertelli, M.O., Deb, S., Munir, K., Hassiotis, A. and Salvador-Carulla, L. (2022) Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder. Springer, Cham. https://doi.org/10.1007/978-3-319-95720-3
[42]
Bertelli, M.O. and Moss, S. (2022) Diagnostic Issues. In: Bertelli, M.O., Deb, S., Munir, K., Hassiotis, A. and Salvador-Carulla, L., Eds., Diagnostic Issues, Springer, Cham, 107-122. https://doi.org/10.1007/978-3-319-95720-3_5
[43]
Seidel, M. (2005) Compulsions, Tics and Stereotypes in People with Intellectual Disabilities. An Introduction to the Topic and Definitions. In: Seidel, M., Ed., Compulsions, Tics and Stereotypes in People with Intellectual Disabilities. A Therapeutic and Pedagogical Challenge, DGSGB, Berlin, 4-12.
[44]
Dosen, A. (2018) Mental and Behavioral Disorders in People with Intellectual Disabilities: An Integrative Approach for Children and Adults. Hogrefe, Gottingen.
[45]
Gentile, J.P., Benson, B.A., Cowan, A.E., Fleisher, M.H. and Gillig, P.M. (2018) Obsessive-Compulsive and Related Disorders. In: Fletcher, R.J., Barnhill, J. and Cooper, S.-A., Eds., Obsessive-Compulsive and Related Disorders. Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability, NADD Press, Kingston, 329-352.
