Attitudes of Support Staff Towards People with Intellectual Disabilities Under Their Care: A Systematic Review of Literature
Keywords:
participation and integration, decision-making, sexual expression, restraints, developmental disability, service provider, bias
Abstract
Purpose. Current literature on attitudes of support staff towards people with intellectual disabilities produces heterogenous findings. The present systematic review aims to provide a synthesis and thorough appraisal of qualitative and quantitative evidence on attitudes of support staff towards people with intellectual disabilities under their care. Methods. A systematic literature search was performed across four electronic databases to identify original articles published in English between 2014 and 2024. PICO framework and PRISMA statement were used to organize the search strategy and study selection. The references were screened on predefined inclusion and exclusion criteria which resulted in 38 studies being included in the review. Results. Four themes emerged: 1) attitudes towards integration and participation, 2) attitudes towards autonomous decision-making, 3) attitudes towards sexual needs and sexual expression, and 4) attitudes towards restrictive measures and restraint interventions. Findings suggest that support staff held skeptical attitudes concerning integration and meaningful participation of people with intellectual disabilities. Moreover, support staff operated under the premise that people with intellectual disabilities were not capable of making independent decisions because they did not understand the consequences of their choices. Support staff considered sexual expression of people with intellectual disabilities a human right, but they expressed insecurity concerning the matter and approached certain facets of sexual expression with caution. Lastly, support staff were clear and unequivocal when it came to the use of restraint and restrictive measures insisting that they used them to regulate the behaviors of people with intellectual disabilities which might harm them or others. Discussion and Conclusions. Variations in attitudes are evident as some support staff exhibit a sincere regard for the welfare and potential of people with intellectual disabilities while others harbor biases towards them. The findings stress the need to address these varied attitudes to enable support staff in delivering high-quality care and support to people with intellectual disabilities.
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References
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Beadle‐Brown J., Beecham J., Leigh J., Whelton R., Richardson L. Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities. 2021. Vol. 34(1). P. 42–54. https://doi.org/10.1111/jar.12782
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Dörenberg V. E., de Veer A. J., Francke A. L., Embregts P. J., van Nieuwenhuijzen M., Frederiks B. J. Applying restrictive measures in the care of adolescents with mild intellectual disabilities: Attitudes of support staff and policy implications. Journal of Policy and Practice in Intellectual Disabilities. 2018. Vol. 15(1). P. 26–35. https://doi.org/10.1111/jppi.12223
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American Psychiatric Association, DSM-5 Task Force. Diagnostic and statistical manual of mental disorders: DSM-5™ (5th ed.). American Psychiatric Publishing, Inc., 2013. https://doi.org/10.1176/appi.books.9780890425596
Araten-Bergman T., Bigby C. Supporting healthy ageing for people with intellectual disabilities in group homes: Staff experiences. Journal of Intellectual & Developmental Disability. 2024. https://doi.org/10.3109/13668250.2023.2297447
Bates C, McCarthy M., Milne Skillman K., Elson N., Forrester-Jones R., Hunt S. “Always trying to walk a bit of a tightrope”: The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships, British Journal of Learning Disabilities. 2020. Vol. 48(4). P. 261–268. https://doi.org/10.1111/bld.12320
Beadle‐Brown J., Beecham J., Leigh J., Whelton R., Richardson L. Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities. 2021. Vol. 34(1). P. 42–54. https://doi.org/10.1111/jar.12782
Bigby C., Beadle-Brown J. Culture in better group homes for people with intellectual disability at severe levels. Intellectual and Developmental Disabilities. 2016. Vol. 54(5). P. 316–331. https://doi.org/10.1352/1934-9556-54.5.316
Bigby C., Wiesel I. Mediating community participation: Practice of support workers in initiating, facilitating or disrupting encounters between people with and without intellectual disability. Journal of Applied Research in Intellectual Disabilities. 2015. Vol. 28(4). P. 307–318. https://doi.org/10.1111/jar.12140
Bigby C., Knox M., Beadle‐Brown J., Clement T. ‘We just call them people’: Positive regard as a dimension of culture in group homes for people with severe intellectual disability. Journal of Applied Research in Intellectual Disabilities. 2015. Vol. 28(4). P. 283–295. https://doi.org/10.1111/jar.12128
Boo L. S. H., Nie Y. Attitude Towards Persons with Intellectual Disability Scale: Further development. Current Psychology: A Journal for Diverse Perspectives on Diverse Psychological Issues. 2018. Vol. 37(4). P. 760–768. https://doi.org/10.1007/s12144-017-9560-5
Carlsson Õ. U., Adolfsson P. No ordinary adult life: Living conditions from the perspective of adults with intellectual disabilities. Journal of Intellectual Disabilities. 2023. Vol. 27(4). P. 944–963. https://doi.org/10.1177/17446295221107284
Charitou M., Quayle E., Sutherland A. Supporting adults with intellectual disabilities with relationships and sex: A systematic review and thematic synthesis of qualitative research with staff. Sexuality and Disability. 2021. Vol. 39. P. 113–146. https://doi.org/10.1007/s11195-020-09646-z
Christine Bigby Mary Whiteside Jacinta Douglas. Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services. Journal of Intellectual & Developmental Disability. 2019b. Vol. 44(4). P. 396–409. https://doi.org/10.3109/13668250.2017.178873
Colarossi L., Collier K. L., Dean R., Pérez S., Riquelme M. O. Sexual and reproductive health education for youth with intellectual disabilities: A mixed methods study of professionals’ practices and needs. Prevention Science. 2023. Vol. 24(SI 2). P. 150–162. https://doi.org/10.1007/s11121-023-01522-4
Cudré-Mauroux A., Piérart G., Vaucher C. Partnership with social care professionals as a context for promoting self-determination among people with intellectual disabilities. Research in Developmental Disabilities. 2020. Vol. 99. P. 103602. https://doi.org/10.1016/j.ridd.2020.103602
Curryer B., Stancliffe R. J., Dew A., Wiese M. Y. Choice and control within family relationships: The lived experience of adults with intellectual disability. Intellectual and Developmental Disabilities. 2018. 56(3). P. 188–201. https://doi.org/10.1352/1934-9556-56.3.188
de Wit W., van Oorsouw W. M., Embregts P. J. Sexuality, education and support for people with intellectual disabilities: A systematic review of the attitudes of support staff and relatives. Sexuality and Disability. 2022. Vol. 40(2). P. 315–346. https://doi.org/10.1007/s11195-021-09724-w
Deb S., Limbu B. Support staff liaising effectively with family caregivers: Findings from a co-design event and recommendation for a staff training resource. Frontiers in Psychiatry. 2022. 13. https://doi.org/10.3389/fpsyt.2022.977442
Deb S., Limbu B., Unwin G. L., Weaver T. The use of medication for challenging behaviors in people with intellectual disabilities: The direct care providers’ perspective. Journal of Mental Health Research in Intellectual Disabilities. 2023. Vol. 16(3). P. 253–274. https://doi.org/10.1080/19315864.2023.2192691
Deffew A., Coughlan B., Burke T., Rogers E. Staff member’s views and attitudes to supporting people with an intellectual disability: a multi‐method investigation of intimate relationships and sexuality. Journal of Applied Research in Intellectual Disabilities. 2022. Vol. 35(4). P. 1049–1058.
Dörenberg V. E., de Veer A. J., Francke A. L., Embregts P. J., van Nieuwenhuijzen M., Frederiks B. J. Applying restrictive measures in the care of adolescents with mild intellectual disabilities: Attitudes of support staff and policy implications. Journal of Policy and Practice in Intellectual Disabilities. 2018. Vol. 15(1). P. 26–35. https://doi.org/10.1111/jppi.12223
Embregts P. J., Negenman A., Habraken J. M., de Boer M. E., Frederiks B. J., Hertogh C. M. Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members. Journal of Applied Research in Intellectual Disabilities. 2019. Vol. 32(1). P. 172–183. https://doi.org/10.1111/jar.12519
Fitton L., Jones D. R. Restraint of adults with intellectual disabilities: A critical review of the prevalence and characteristics associated with its use. Journal of Intellectual Disabilities. 2020. 24(2). P. 268–283. https://doi.org/10.1177/1744629518778695
Fylkesnes I. Institutional talk and practices: A journey into small group-homes for intellectually disabled children. Disability & Society. 2021. Vol. 36(6). P. 999–1020. https://doi.org/10.1080/09687599.2020.1779037
Golding N. S., Rose J. Exploring the attitudes and knowledge of support workers towards individuals with intellectual disabilities. Journal of Intellectual Disabilities. 2015. Vol. 19(2). P. 116–129. https://doi.org/10.1177/1744629514563777
Hannah A., Pelleboer-Gunnink, Wietske M. W. J. van Oorsouw, Jaap van Weeghel Petri J. C. M. Embregts. Stigma research in the field of intellectual disabilities: a scoping review on the perspective of care providers, International Journal of Developmental Disabilities. 2021. Vol. 67(3). P. 168–187. https://doi.org/10.1080/20473869.2019.1616990
Hermsen M., Simons R., van Veen H., Prudon A., Rooijackers L., Otten R., Koordeman R. Building high-quality interpersonal staff-client relationships with people with severe to profound intellectual disabilities and challenging behavior: Insights of professionals and relatives. Journal of Intellectual Disabilities. 2024. Vol. 28(1). P. 17–34. https://doi.org/10.1177/17446295221131443
Horner‐Johnson W., Keys C. B., Henry D., Yamaki K., Watanabe K., Oi F., ... Shimada H. Staff attitudes towards people with intellectual disabilities in Japan and the United States. Journal of Intellectual Disability Research. 2015. Vol. 59(10). P. 942–947. https://doi.org/10.1111/jir.12179
James J. S. Beliefs about intellectual disability among employees at a state facility and undergraduate students: An exploratory analysis. Journal of Applied Research in Intellectual Disabilities. 2019. Vol. 32(1). P. 51–60. https://doi.org/10.1111/jar.12501
Kahonde C. K. Perceptions and responses of staff to the sexuality of adults with intellectual disabilities at facilities in the Western Cape Province of South Africa. Journal of Intellectual Disabilities. 2023. Vol. 27(1). P. 138–155. https://doi.org/10.1177/17446295211048743
Leclerc M. J., Morin D. Factors affecting residential staff’s role in supporting the sexuality of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 2022. Vol. 35(4). P. 1028–1036. https://doi.org/10.1111/jar.12935
Liberati A., Altman D. G., Tetzlaff J., Mulrow C., Gøtzsche P. C., Ioannidis J. P., ... Moher D. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. Annals of Internal Medicine. 2009. Vol. 151(4). e1000100. https://doi.org/10.7326/0003-4819-151-4-200908180-0013
Moher D., Liberati A., Tetzlaff J., Altman D. G., PRISMA Group* T. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Annals of Internal Medicine. 2009. Vol. 151(4). P. 264–269. https://doi.org/10.7326/0003-4819-151-4-200908180-00135
Neuman R. Attitudes of direct support staff regarding couple relationships of adults with intellectual disability: Implications for the provision of support. Journal of Social Service Research. 2020. Vol. 46(5). P. 713–725. https://doi.org/10.1080/01488376.2019.1648361
Neuman R. Supporting people with intellectual and developmental disabilities in their adult aspiration for sexual relationships and parenthood. Sexuality Research and Social Policy. 2022. Vol. 19. P. 599–609. https://doi.org/10.1007/s13178-021-00574-x
Nørtoft K., Rubin S. E. Let’s Talk About Sex! Perspectives from People with Intellectual and Developmental Disabilities and Caregivers in Residential Institutions in Greenland. Sexuality and Disability. 2024. https://doi.org/10.1007/s11195-023-09828-5
Oloidi E. O., Northway R., Prince J. ‘People with intellectual disabilities living in the communities is bad enough let alone… having sex’: Exploring societal influence on social care workers’ attitudes, beliefs and behaviours towards support for personal and sexual relationship needs. Journal of Applied Research in Intellectual Disabilities. 2022. Vol. 35(4). P. 1037–1048. https://doi.org/10.1111/jar.12839
Pariseau‐Legault P., Holmes D., Ouellet G., Vallée‐Ouimet S. An ethical inquiry of support workers’ experiences related to sexuality in the context of intellectual disabilities in Quebec, Canada. British Journal of Learning Disabilities. 2019. Vol. 47(2). P. 116–125. https://doi.org/10.1111/bld.12264
Qian X., Tichá R., Larson S. A., Stancliffe R. J., Wuorio A. The impact of individual and organisational factors on engagement of individuals with intellectual disability living in community group homes: a multilevel model. Journal of Intellectual Disability Research. 2015. Vol. 59(6). P. 493–505. https://doi.org/10.1111/jir.12152
Schaafsma D., Kok G., Stoffelen J. M., Van Doorn P., Curfs L. M. Identifying the important factors associated with teaching sex education to people with intellectual disability: A cross-sectional survey among paid care staff. Journal of Intellectual and Developmental Disability. 2014. Vol. 39(2). P. 157–166. https://doi.org/10.3109/13668250.2014.899566
Talman L., Gustafsson, C., Stier, J., Wilder, J. Staffs’ documentation of participation for adults with profound intellectual disability or profound intellectual and multiple disabilities. Disability and Rehabilitation. 2018. Vol. 40(21). P. 2527–2537. https://doi.org/10.1080/09638288.2017.1340979
Talman L., Wilder J., Stier J., Gustafsson C. Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities. 2019. Vol. 32(1). P. 143–151. https://doi.org/10.1111/jar.12516
Talman L., Wilder J., Stier J., Gustafsson C. Staff’s and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilities. Scandinavian Journal of Disability Research. 2019. Vol. 21(1). P. 78–88. https://doi.org/10.16993/sjdr.53
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Published
2024-10-29
Pages
428-470
How to Cite
Anis M., & Nordin N. A. (2024). Attitudes of Support Staff Towards People with Intellectual Disabilities Under Their Care: A Systematic Review of Literature. Insight: The Psychological Dimensions of Society, (12), 428-470. https://doi.org/10.32999/2663-970X/2024-12-5
Section
SPECIAL PSYCHOLOGY
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