Keywords
social policy
nurse
social pedagogue
psycho-pedagogue
social worker
situated knowledge
autoethnography
psychiatric comorbidity
mental disorder
Intellectual and Developmental Disability (IDD)
Abstract
The article provides a reflection on the social inclusion of children and young people with IDD and associated psychiatric comorbidity through the eyes of practitioners and academics from Norway, Scotland, Sweden, and Romania. Using an autoethnographic approach to share the first-hand experiences of supporting children and young adults with IDD from the perspective of experienced practitioners, telling their stories (individual case studies) and mapping the challenges and successes (best practice) through these professional narratives. The article also acknowledges psychiatric comorbidity in young people with IDD and how psychiatric disorders can impact social inclusion. The results of the self-reflection of active practitioners involved with complex disabilities may serve as a guide for others in sharing best practices and facing difficulties. It also shows the policy developments on a timeline of their practice. Practice-informed issues clinicians and support staff face may aid the training and share the knowledge with other experts. The value added is the interprofessional exchange created by the international contributors.
Funding
This article is an outcome of the project co-funded by EU under Erasmus 2019-1-SE01-KA203-060425. Project title: Removal of barriers to social inclusion and social participation for children and young adults with intellectual and developmental disabilities. Project page: https://siidd.eu/ Disclaimer: The European Commission’s support for the production of this publication does not constitute an endorsement of the contents, which reflect the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.
References
Abdulla, S., Brown, M., & Grung, R. (2018). Student experiences of an Erasmus+ project on children and young people with complex intellectual and developmental disabilities. Learning Disability Practice, 21(1), 38-42. DOI: https://doi.org/10.7748/ldp.2018.e1874
Baranowski, M. (2020). A contribution to the critique of worthless education: between critical pedagogy and welfare sociology. Globalisation, Societies and Education, 18(4), 391-405. DOI: https://doi.org/10.1080/14767724.2020.1732195
Baranowski, M. & Odrowaz-Coates, A. (2018). Attempting to register changes: the educational dimension of contemporary societies. Society Register, 2(2), 7-10. DOI: https://doi.org/10.14746/sr.2018.2.2.01
Blanco-Vieira, T., Silva Ribeiro, W., Lauridsen-Ribeiro, E., Graça Fatori de Sá, D., Palma, S. M. M., Vieira Ribeiro, M. V., Cavalcante Caetano, S., Ramos, F. A. da C., & Conceição do Rosário, M. (2017). An evaluation of a collaborative course for child and adolescent mental health professionals. Journal of Interprofessional Care, 31(5), 664-666. DOI: https://doi.org/10.1080/13561820.2017.1322561
Brown, M., Higgins, A., MacArthur, J. (2020). Transition from child to adult services: a qualitative study of the views and experiences of families of young adults with intellectual disabilities. Journal of Clinical Nursing, 29(1-2), 195-207. DOI: https://doi.org/10.1111/jocn.15077
Buckley, N., Glasson, E.J., Chen, W., Epstein, A., Leonard, H., Skoss, R., Jacoby, P., Blackmore, A.M., Srinivasjois, R., Bourke, J., Sanders, R.J., Downs, J. (2020). Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis. Australian & New Zealand Journal of Psychiatry, 54(10), 970-984. DOI: https://doi.org/10.1177/0004867420924101
Cluley, V. (2018). From ‘Learning disability to intellectual disability’—Perceptions of the increasing use of the term “intellectual disability” in learning disability policy, research and practice. British Journal of Learning Disabilities, 46(1), 24-32. DOI: https://doi.org/10.1111/bld.12209
Cohen, A., & Court, D. (2003). Ethnography and case study: A comparative analysis. Academic Exchange Quarterly, 7(3), 283-287.
Cooper, S., Pell, J. P. (2020). Neurodevelopmental multimorbidity and educational outcomes of Scottish schoolchildren: A population-based record linkage cohort study. PLOS Medicine, 17(10), 1-24. DOI: https://doi.org/10.1371/journal.pmed.1003290
Cuthill, F. M., Espie, C. A., Cooper, S. (2003). Development and psychometric properties of the Glasgow Depression Scale for people with a Learning Disability. British Journal of Psychiatry, 182, 347-353. DOI: https://doi.org/10.1192/bjp.182.4.347
Doyle, J. (2008). Barriers and facilitators of multidisciplinary team working: a review. Paediatric Nursing, 20(2), 26-29. DOI: https://doi.org/10.7748/paed2008.03.20.2.26.c6526
Engelbrecht, P., Oswald, M., Swart, E., & Eloff, I. (2003). Including Learners with Intellectual Disabilities: Stressful for teachers? International Journal of Disability, Development, and Education, 50(3), 293-308. DOI: https://doi.org/10.1080/1034912032000120462
Emerson, E., & Baines, S. (2011). Health inequalities and people with learning disabilities in the UK. Tizard Learning Disability Review, 16(1), 42–48. DOI: https://doi.org/10.5042/tldr.2011.0008
Espadas, C., Ballester, P., Londono, A. C., Almenara, S., Aguilar, V., Belda, C., Perez, E., & Peiro, A. M. (2020). Multimorbidity and psychotropic polypharmacy among participants with autism spectrum disorder with intellectual disability. Psychiatry Research, 292, 113321. DOI: https://doi.org/10.1016/j.psychres.2020.113321
Fava, G. A., & Rafanelli, C. (2019). Iatrogenic factors in psychopathology. Psychotherapy & Psychosomatics, 88, 129-140. DOI: https://doi.org/10.1159/000500151
Gardner, L., Campbell, J. M., Gilchrest, C., McClain, M. B., Shahidullah, J. D. (2022). Identification of autism spectrum disorder and interprofessional collaboration between school and clinical settings. Psychology in the Schools, 59(7), 1308-1318. DOI: https://doi.org/10.1002/pits.22673
Glasson, E.J., Buckley, N., Chen, W., Leonard, H., Epstein, A., Skoss, R., Jacoby, P., Blackmore, A.M., Bourke, J., Downs, J. (2020). Systematic Review and Meta-analysis: Mental Health in Children With Neurogenetic Disorders Associated With Intellectual Disability. Journal of the American Academy of Child & Adolescent Psychiatry, 59(9), 1036-1048. DOI: https://doi.org/10.1016/j.jaac.2020.01.006
Gobrial, E. (2019). Comorbid mental health disorders in children and young people with intellectual disabilities and autism spectrum disorders. Advances in Mental Health and Intellectual Disabilities, 13(5), 173-181. DOI: https://doi.org/10.1108/AMHID-05-2018-0026
Granas, A. G., Halvorsen, K. H., Wendelbo, J., Landmark, C. J. (2019). Interdisciplinary medication review to improve pharmacotherapy for patients with intellectual disabilities. International Journal of Clinical Pharmacy, 41(6), 1516-1525. DOI: https://doi.org/10.1007/s11096-019-00914-3
Green, S. E. (2002). Mothering Amanda: Musing on the Experience of raising a Child with cerebral Palsy. Journal of Loss and Trauma, 7(1), 21-34. DOI: https://doi.org/10.1080/108114402753344463
Grung, R. M., Abdulla, S., Brown, M., Ferencz-Kiss, J., Ortan, F., Odrowaz-Coates, A., Surfraz, M., Tah, J., Marsh, L. (2020). Social inclusion for people with intellectual disabilities in seven different countries. Learning Disability Practice, 24(1), 1-10. DOI: https://doi.org/10.7748/ldp.2020.e2120
Haraway, D. (1988). Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective. Feminist Studies, 14(3), 575-599. DOI: https://doi.org/10.2307/3178066
Haraway, D. (1991). Simians, Cyborgs and Women: The Reinvention of Women. London: Free Association Books.
Hinshelwood, R. & Skogstad, W. (2000). Observing Organisations: Anxiety, Defence and Culture in Health Care. London: Routledge.
Hirsch, K. (1998). Culture and Disability: The role of oral history. In R. Perks & T. Alistair (Eds.), The Oral History Reader (pp. 214-223). London: Routledge.
Hughes, E. (1984). Mistakes at Work. In E. Hughes (Ed.), The Sociological Eye. Selected Papers (pp. 316-325). New Brunswick, NJ: Transaction.
Jones, J., McQueen, M., Lowe, S., Minnes, P., & Rischke, A. (2015). Interprofessional Education in Canada: Addressing knowledge, skills, and attitudes concerning Intellectual Disability for future healthcare professionals. Journal of Policy and Practice in Intellectual Disabilities, 12(3), 172-180. DOI: https://doi.org/10.1111/jppi.12112
Kerns, C. M., Winder-Patel, B., Iosif, A.M., Nordahl, C. W., Heath, B., Solomon, M., Amaral, D. G. (2021). Clinically significant anxiety in children with autism spectrum disorder and varied intellectual disability. Journal of Clinical Child & Adolescent Psychology, 50(6), 780-795. DOI: https://doi.org/10.1080/15374416.2019.1703712
Leigh, J., Disney, T., Warwick, L., Ferguson, H., Beddoe, L., & Cooner, T. S. (2021). Revealing the hidden performances of social work practice: The ethnographic process of gaining access, getting into place and impression management. Qualitative Social Work, 20(4), 1078-1095. DOI: https://doi.org/10.1177/1473325020929067
Liao, P., Vajdic, C., Trollor, J., Reppermund, S. (2021). Prevalence and incidence of physical health conditions in people with intellectual disability – a systematic review. PLoS ONE, 16(8). DOI: https://doi.org/10.1371/journal.pone.0256294
Mazza, M. G., Rossetti, A., Crespi, G., & Clerici, M. (2020). Prevalence of co‐occurring psychiatric disorders in adults and adolescents with intellectual disability: A systematic review and meta‐analysis. Journal of Applied Research in Intellectual Disabilities, 33(2), 126-138. DOI: https://doi.org/10.1111/jar.12654
Merrels, J., Buchanan, A., & Waters, R. (2019). ‘We feel left out’: experiences of social inclusion from the perspective of young adults with intellectual disability. Journal of Intellectual & Developmental Disability, 44(1), 13-22. DOI: https://doi.org/10.3109/13668250.2017.1310822
Mental Health (Care and Treatment) Scotland Act (2015)
Moreno, E. (1995). Rape in the field: reflections from a survivor. In D. Kulick & M. Willson (Eds.), Taboo: Sex, identity and erotic subjectivity in anthropological fieldwork (pp. 219-250). London, New York: Routledge. DOI: https://doi.org/10.4324/9780203420379_chapter_8
Munir, K. M. (2016). The co-occurrence of mental disorders in children and adolescents with intellectual disability/intellectual developmental disorder. Current Opinion Psychiatry, 29(2), 95-102. DOI: https://doi.org/10.1097/YCO.0000000000000236
Mutluer, T., Genc, H. A., Morey, A. O., Eser, H. Y., Ertinmaz, B., Can, M., & Munir, K. (2022). Population-Based Psychiatric Comorbidity in Children and Adolescents With Autism Spectrum Disorder: A Meta-Analysis. Frontiers in Psychiatry, 13. DOI: https://doi.org/10.3389/fpsyt.2022.856208
O’Toole, L., Nelson, S., O’Connor, M., & Carey, E. (2018). Interprofessional working between intellectual disability nurses and speech and language therapists. Learning Disability Practice, 21(2), 27-31. DOI: https://doi.org/10.7748/ldp.2018.e1867
Odrowaz-Coates, A. (2015). A gated community as a ‘soft’ and gendered total institution. International Sociology, 30(3), 233-249. DOI: https://doi.org/10.1177/0268580915578759
Olsen, M. I., Halvorsen, M. B., Sondenaa, E., Langballe, E. M., Bautz-Holter, E., Stensland, E., Tessem, S., & Anke, A. (2021). How do multimorbiditiy and lifestyle factors impact the perceived health of adults with intellectual disabilities? Journal of Intellectual Disability Research, 65(8), 772-783. DOI: https://doi.org/10.1111/jir.12845
Pena-Salazar, C., Fontanet, A., Arrufat, F., Gonzalez-Castro, G., Santos, J. M., Mas, S., & Roura-Poch, P. (2020). Underdiagnosis of psychiatric disorders in people with intellectual disabilities: Differences between psychiatric disorders and challenging behaviour. Journal of Intellectual Disabilities, 24(3), 326-338. DOI: https://doi.org/10.1177/1744629518798259
Perumall, A. (2017). An exploration of partnership working between the youth justice service and the multi-agency safeguarding hub & first response team in relation to safeguarding referrals regarding young people supervised by the youth justice service. Society Register, 1(1), 123-146. DOI: https://doi.org/10.14746/sr.2017.1.1.11
Riemann, G. (2005). Ethnographies of Practice—Practising Ethnography. Resources for self-reflective social work. Journal of Social Work Practice, 19(1), 87-101. DOI: https://doi.org/10.1080/02650530500072009
White, S. & Riemann, G. (2010). Researching our Own Domains: Research as Practice in ‘Learning Organizations’. In I. Shaw, K. Briar-Lawson, J. Orme, & R. Ruckdeschel (Eds.), The Sage Handbook of Social Work Research (pp. 83-97). London: SAGE. DOI: https://doi.org/10.4135/9780857021106.n6
Rosen, M., (1991). Coming To Terms With the Field: Understanding and Doing Organizational Ethnography. Journal of Management Studies, 28(1), 1-24. DOI: https://doi.org/10.1111/j.1467-6486.1991.tb00268.x
Saaranen, T., Silen-Lipponen, M., Palkolhati, M., Monkkonen, K., Tiihonen, M., & Sormunen, M. (2020). Interprofessional learning in social and health care – experiences from large-group simulation in Finland. Nursing Open, 7(6), 1978-1987. DOI: https://doi.org/10.1002/nop2.589
Schapmire, T. J., Head, B. A., Nash, W. A., Yankeelov, P. A., Furman, C. D., Wright, R. B., Gopalraj, R., Gordon, B., Black, K. P., Jones, C., Hall-Faul, M., Faul, A. C. (2018). Overcoming barriers to interprofessional education in gerontology: the Interprofessional Curriculum for the Care of Older Adults. Advances in Medical Education and Practice, 9, 109-118. DOI: https://doi.org/10.2147/AMEP.S149863
Smith, M., Manduchi, B., Burke, É., Carroll, R., McCallion, P., & McCarron, M. (2020). Communication difficulties in adults with Intellectual Disability: Results from a national cross-sectional study. Research in Developmental Disabilities, 97, 103557–103557. DOI: https://doi.org/10.1016/j.ridd.2019.103557
Stake, R. E. (2005). Qualitative Case Studies. In N. K. Denzin & Y. S. Lincoln (Eds.), The Sage Handbook of Qualitative Research (pp. 443-466). London: SAGE.
Stevenson, O. (2013). Reflections on a Life in Social Work: A Personal & Professional Memoir. Buckingham, UK: Hinton House Publishers.
Strauss, A., Fagerhaugh, S., Suczek, B. & Wiener, C. (1985). Social Organization of Medical Work. Chicago, IL and London: University of Chicago Press.
Streeck, W. (2023). Reflections on the particular and the universal: unity and diversity in social life and social theory. Society Register, 7(2), 7-20. DOI: https://doi.org/10.14746/sr.2023.7.2.01
Sun, J. J., Perera, B., Henley, W., Angus-Leppan, H., Sawhney, I., Watkins, L., Purandare, K.N., Eyeoyibo, M., Scheepers, M., Line, G., Winterhalder, R., Ashby, S., De Silva, R., Miller, J., Philpott, D. E., Ashwin, C., Howkins, J. M. Slaters, H., Medhurst, D., & Shankar, R. (2022). Epilepsy related multimorbidity, polypharmacy and risks in adults with intellectual disabilities: a national study. Journal of Neurology, 269(5), 2750-2760. DOI: https://doi.org/10.1007/s00415-021-10938-3
Tellis, W. M. (1997). Introduction to Case Study. The Qualitative Report, 3(2), 1-14. DOI: https://doi.org/10.1108/10650749710187617
Tromans, S., Kinney, M., Chester, V., Alexander, R., Roy, A., Sander, J. W., Dudson, H., & Shankar, R. (2020). Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic. BJPsych Open, 6(6), E128. DOI: https://doi.org/10.1192/bjo.2020.122
Truesdale, M. & Brown, M. (2017). People with Learning Disabilities in Scotland: 2017 Health Needs Assessment Update Report. Edinburgh: NHS Scotland.
Tyrer, F., Dunkley, A. J., Singh, J., Kristunas, C., Khunti, K., Bhaumik, S., Davies, M. J., Yates, T. E., & Gray, L. J. (2018). Multimorbidity and lifestyle factors among adults with intellectual disabilities: a cross-sectional analysis of a UK cohort. Journal of Intellectual Disability Research, 63(3), 255-265. DOI: https://doi.org/10.1111/jir.12571
Westerman, W. (1998). Central American refugee testimonies and performed life histories in the Sanctuary movement. In R. Perks & T. Alistair (Ed.), The Oral History Reader (pp. 224-234). London: Routledge.
White, S. (1997). Performing Social Work: An Ethnographic Study of Talk and Text in a Metropolitan Social Services Department. PhD thesis, University of Salford.
Yin, R. (1994). Case study research: Design and methods (2nd ed.). Beverly Hills, CA: SAGE Publishing.
Zaviršek, D. (2006). Ethnographic research as the source of critical knowledge in social work and other caring professions. In V. Flaker & T. Schmid (Eds.), Von der Idee zur Forschungsarbeit: Forschen in Sozialarbeit un Sozialwissenschaft, (Böhlau Studienbücher BSB) (pp. 125-144). Wien: Böhlau Verlag, Herbst.
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