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Stigma research in the field of intellectual disabilities: a scoping review on the perspective of care providers

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Pages 168-187 | Received 16 Nov 2018, Accepted 05 May 2019, Published online: 25 Jul 2019

References

  • Allport, G. W. 1954. The nature of prejudice. Cambridge, MA: Addison-Wesley.
  • Antonak, F. R., and Livneh, H. 2000. Measurement of attitudes towards persons with disabilities. Disability and Rehabilitation, 22, 211–224.
  • Arksey, H., and O’Malley, L. 2005. Towards a methodological framework. International Journal of Social Research Methodology, 8, 19–25.
  • Bate, P., and Robert, G. 2006. Experience-based design: From redesigning the system around the patient to co-designing services with the patient. Quality and Safety in Health Care, 15, 307–310.
  • Bazzo G., Nota, L., Soresi, S., Ferrari, L., and Minnes, P. 2007. Attitudes of social service providers towards the sexuality of individuals with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 20, 110–115.
  • Beart, S., Hardy, G., and Buchan, L. 2005. How People with Intellectual Disabilities View Their Social Identity: A Review of the Literature. Journal of Applied Research in Intellectual Disabilities, 18, 47–56.
  • Bekkema, N., de Veer, A. J. E., Wagemans, A. M. A., Hertogh, C. M. P. M., and Francke, A. L. 2014. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff. Patient Education and Counselling, 96, 204–209.
  • Bekkema, N., de Veer, A. J. E., Wagemans, A. M. A., Hertogh, C. M. P. M., and Francke, A. L. 2015. To move or not to move: A national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities. Journal of Intellectual Disability Research, 59, 226–237.
  • Bigby, C., Clement, T., Mansell, J., and Beadle-Brown, J. 2009. “It’s pretty hard with our ones, they can’t talk, the more able bodied can participate”: Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities. Journal of Intellectual Disability Research, 53, 363–76.
  • Bigby, C., and Wiesel, I. 2015. Mediating community participation: Practice of support workers in initiating, facilitating or disrupting encounters between people with and without intellectual disability. Journal of Intellectual Disability Research, 28, 307–318.
  • Channon, A. 2014. Intellectual disability and activity engagement: Exploring the literature from an occupational perspective. Journal of Occupational Science, 21, 443–458.
  • Christian, L. A., Stinson, J., and Dotson, L. A. 2002. Staff values regarding the sexual expression of women with developmental disabilities. Sexuality and Disability, 19, 283–291.
  • Clement, T., and Bigby, C. 2009. Breaking out of a distinct social space: Reflections on supporting community participation for people with severe and profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 22, 264–275.
  • Corrigan, P., Markowitz, F., and Watson, A. 2004. Structural levels of mental illness stigma and discrimination. Schizophrenia Bulletin, 30, 481–491.
  • Corrigan, P. W., and Watson, A. C. 2002. Understanding the impact of stigma on people with mental illness. World Psychiatry, 1, 16–20.
  • Craig, J., Craig, F., Withers, P., Hatton, C., and Limb, K. 2002. Identity conflict in people with intellectual disabilities: What role do service-providers play in mediating stigma? Journal of Applied Research in Intellectual Disabilities, 15, 61–72.
  • Crook, B., Tomlins, R., Bancroft, A., and Ogi, L. 2016. “So often they do not get recruited”: Exploring service user and staff perspectives on participation in learning disability research and the barriers that inhibit it. British Journal of Learning Disabilities, 44, 130–137.
  • Cuskelly, M., and Bryde, R. 2004. Attitudes towards the sexuality of adults with an intellectual disability: Parents, support staff, and a community sample. Journal of Intellectual and Developmental Disability, 29, 255–264.
  • Doody, C. M., Markey, K., and Doody, O. 2013. The experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Journal of Clinical Nursing, 22, 1112–1123.
  • Dorozenko, K. P., Roberts, L. D., and Bishop, B. J. 2015. Imposed identities and limited opportunities: Advocacy agency staff perspectives on the construction of their clients with intellectual disabilities. Journal of Intellectual Disabilities, 19, 282–299.
  • Douglas, J., and Bigby, C. 2018. Development of an evidence-based framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability. Disability and Rehabilitation, 1–8. https://www.ncbi.nlm.nih.gov/pubmed/30451022.
  • Embregts, P. J. C. M. 2011. Zien, bewogen worden, in beweging komen [Notice, being touched, and coming into action]. Tilburg: Tilburg University.
  • Evans, D. S., McGuire, B. E., Healy, E., and Carley, S. N. 2009. Sexuality and personal relationships for people with an intellectual disability. Part II: Staff and family carer perspectives. Journal of Intellectual Disability Research, 53, 913–921.
  • Evans‐lacko, S. Little, K. Meltzer, H. Rose, D. Rhydderch, D. Henderson, C.& Thornicroft, G.2010. Development and psychometric properties of the Mental Health KnowledgeSchedule. La Revue Canadienne de Psychiatrie. 55(7) 440–448.
  • Felce, D. 1998. The determinants of staff and resident activity in residential services for people with severe intellectual disability: Moving beyond size, building design, location and number of staff. Journal of Intellectual and Developmental Disability, 23, 103–119.
  • Flatt-Fultz, E., and Phillips, L. A. 2012. Empowerment training and direct support professionals’ attitudes about individuals with intellectual disabilities. Journal of Intellectual Disabilities, 16, 119–125.
  • Giesbers, S. A. H., Hendriks, L., Jahoda, A., Hastings, R. P., and Embregts, P. J. C. M. 2019. Living with support: Experiences of people with mild intellectual disability. Journal of Applied Research in Intellectual Disabilities, 32, 446–456.
  • Gilmore, L., and Chambers, B. 2010. Intellectual disability and sexuality: Attitudes of disability support staff and leisure industry employees. Journal of Intellectual & Developmental Disability, 35, 22–8.
  • Goffman, E. 1963. Stigma: Notes on the management of spoiled identity. 2nd ed. New York: Prentice-Hall.
  • Golding, N. S., and Rose, J. 2015. Exploring the attitudes and knowledge of support workers towards individuals with intellectual disabilities. Journal of Intellectual Disabilities, 19, 116–129.
  • Grieve, A., McLaren, S., Lindsay, W., and Culling, E. 2009. Staff attitudes towards the sexuality of people with learning disabilities: A comparison of different professional groups and residential facilities. British Journal of Learning Disabilities, 37, 76–84.
  • Haddock, G, Zanna M. P. 1998. On the use of open-ended measures to assess attitudinal components. British Journal on Social Psychology, 37, 129–49.
  • Hare, D. J., Durand, M., Hendy, S., and Wittkowski, A. 2012. Thinking about challenging behavior: A repertory grid study of inpatient staff beliefs. Intellectual and Developmental Disabilities, 50, 468–478.
  • Harper, D. J. 1994. Evaluating a training package for staff working with people with learning disabilities prior to hospital closure. The British Journal of Developmental Disabilities, 78, 45–53.
  • Harris, P., and Brady, C. 1995. Attitudes of speech and language therapists to intimate relationships among people with learning difficulties: An exploratory study. British Journal of Learning Disabilities, 23, 160–163.
  • Hastings, R. P. 2010. Support staff working in intellectual disability services: The importance of relationships and positive experiences. Journal of Intellectual & Developmental Disability, 35, 207–210.
  • Henry, D., Keys, C., Balcazar, F., and Jopp, D. 1996. Attitudes of community-living staff members toward persons with mental retardation, mental illness, and dual diagnosis. Mental Retardation, 34, 367–379.
  • Henry, D. B., Duvdevany, I., Keys, C. B., and Balcazar, F. E. 2004. Attitudes of American and Israeli staff toward people with intellectual disabilities. Mental Retardation, 42, 26–36.
  • Holmes, M. 1998. An evaluation of staff attitudes towards the sexual activity of people with learning disabilities. British Journal of Occupational Therapy, 61, 111–115.
  • Horner-Johnson, W., Keys, C. B., Henry, D., Yamaki, K., Watanabe, K., Oi, F., Fujimura, I., Graham, B. C., and Shimada, H. 2015. Staff attitudes towards people with intellectual disabilities in Japan and the United States. Journal of Intellectual Disability Research, 59, 942–947.
  • Horsfall, J., Cleary, M., and Hunt, G. E. 2010. Stigma in mental health: Clients and professionals. Issues in Mental Health Nursing, 31, 450–455.
  • Hugo, M. 2001. Mental health professionals’ attitudes towards people who have experienced a mental health disorder. Journal of Psychiatric and Mental Health Nursing, 8, 419–425.
  • Jahoda, A., and Markova, I. 2004. Coping with social stigma: people with intellectual disabilities moving from institutions and family home. Journal of Intellectual Disability Research, 48, 719–729.
  • Jahoda, A., Wilson, A., Stalker, K., and Cairney, A. 2010. Living with stigma and the self-perceptions of people with mild intellectual disabilities. Journal of Social Issues, 66, 521–534.
  • Jones, J., Ouellette-Kuntz, H., Vilela, T., and Brown, H. 2008. Attitudes of community developmental services agency staff toward issues of inclusion for individuals with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 5, 219–226.
  • Kordoutis, P., Kolaitis, G., Perakis, A., Papanikolopoulou, P., and Tsiantis, J. 1995. Change in care staff attitudes towards people with learning disabilities following intervention at Leros PIKPA Asylum. British Journal of Psychiatry, Supplement, 167(28), 56–69.
  • Lauber, C., Nordt, C., Braunschweig, C., and Rössler, W. 2006. Do mental health professionals stigmatize their patients? Acta Psychiatrica Scandinavica, 113(429), 51–59.
  • Lee, A., and Kiemle, G. 2015. “It”s one of the hardest jobs in the world’: The experience and understanding of qualified nurses who work with individuals diagnosed with both learning disability and personality disorder. Journal of Applied Research in Intellectual Disabilities, 28, 238–248.
  • Liberati, A., Altman, D. G., Tetzlaff, J., Mulrow, C., Gøtzsche, P. C., Ioannidis, J. P., Clarke, M., Devereaux, P. J., Kleijnen, J., and Moher, D. 2009. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. British Medical Journal, 339, b2700.
  • Link, B. G., and Phelan, J. C. 2001. Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.
  • Logeswaran, Sophini. Hollett, Megan. Zala, Sonia. Richardson, Lisa. Scior, Katrina. How do people with intellectual disabilities construct their social identity? A review. Journal of Applied Research in Intellectual Disabilities. 2019. 32(3) 533–542. 10.1111/jar.12566.
  • Maes, B., and Van Puyenbroeck, J. 2008. Adaptation of Flemish services to accommodate and support the aging of people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 5, 245–252.
  • Mason, J.& Scior, K.2004. “Diagnostic Overshadowing” Amongst Clinicians Working with People withIntellectual Disabilities in the UK. Journal of Applied Research in IntellectualDisabilities. 17(2) 85–90.
  • McConkey, R., and Truesdale, M. 2000. Reactions of nurses and therapists in mainstream health services to contact with people who have learning disabilities. Journal of Advanced Nursing, 32, 158–163.
  • Meaney-Tavares, R., and Gavidia-Payne, S. 2012. Staff characteristics and attitudes towards the sexuality of people with intellectual disability. Journal of Intellectual and Developmental Disability, 37, 269–273.
  • Meppelder, M., Hodes, M. W., Kef, S., and Schuengel, C. 2014. Expecting change: Mindset of staff supporting parents with mild intellectual disabilities. Research in Developmental Disabilities, 35, 3260–8.
  • Murray, J. L., and Minnes, P. M. 1994. Staff attitudes towards the sexuality of persons with intellectual disability. Australia and New Zealand Journal of Developmental Disabilities, 19, 45–52.
  • Murray, J. L., MacDonald, A. R., and Minnes, P. M. 1995. Staff attitudes towards individuals with learning disabilities and AIDS: The role of attitudes towards client sexuality and the issue of mandatory testing for HIV infection. Mental Handicap Research, 8, 322–332.
  • Oliver, M. N., Anthony, A., Leimkuhl, T. T., and Skillman, G. D. 2002. Attitudes toward acceptable socio-sexual behaviors for persons with mental retardation: Implications for normalization and community integration. Education and Training in Mental Retardation and Developmental Disabilities, 37, 193–201.
  • Pace, R., Pluye, P., Bartlett, G., Macaulay, A. C., Salsberg, J., Jahosh, J., and Seller, R. 2012. Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review. International Journal of Nursing Studies, 49, 47–53.
  • Parchomiuk, M. 2012. Specialist and sexuality of individuals with disability. Sexuality and Disability, 30, 407–419.
  • Parkes, N. 2006. Sexual issues and people with a learning disability. Learning Disability Practice, 9, 32–37.
  • Patka, M., Keys, C. B., Henry, D. B., and McDonald, K. E. 2013. Attitudes of Pakistani community members and staff toward people with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 118, 32–43.
  • Pebdani, R. N. 2016. Attitudes of group home employees towards the sexuality of individuals with intellectual disabilities. Sexuality and Disability, 34, 329–339.
  • Pelleboer-Gunnink, H. A., Van Oorsouw, W. M. W. J., Van Weeghel, J., and 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, 411–434.
  • Pettigrew, T. F., and Tropp, L. R. 2006. A meta-analytic test of intergroup contact theory. Journal of Personality and Social Psychology, 90, 751–783.
  • Pham, M. T., Rajić, A., Greig, J. D., Sargeant, J. M., Papadopoulos, A., and Mcewen, S. A. 2014. A scoping review of scoping reviews: Advancing the approach and enhancing the consistency. Research Synthesis Methods, 5, 371–385.
  • Pijnenborg, M., Kienhorst, G., van ’t Veer, J., and van Weeghel, J. 2016. Epiloog: Lessen voor de toekomst [Epilogue: Lessons for the future]. In J. van Weeghel, M. Pijnenborg, J. van ’t Veer, and G. Kienhors, eds., Handboek destigmatisering bij psychische aandoeningen: principes, perspectieven en praktijken [Handbook destigmatisation in mental illness: principles, perspectives and practices]. Bussum: Uitgeverij Coutinho, pp.305–322.
  • Redman, M., Taylor, E., Furlong, R., Carney, G., and Greenhill, B. 2012. Human rights training: Impact on attitudes and knowledge. Tizard Learning Disability Review, 17, 80–87.
  • Sanderson, K. A., Burke, M. M., Urbano, R. C., Arnold, C. K., and Hodapp, R. M. 2017. Who Helps? Characteristics and correlates of informal supporters to adults with disabilities. American Journal on Intellectual and Developmental Disabilities, 122, 492–510.
  • Schomerus, G., Corrigan, P. W., Klauer, T., Kuwert, P., Freyberger, H. J., and Lucht, M. 2011. Self-stigma in alcohol dependence: Consequences for drinking-refusal self-efficacy. Drug and Alcohol Dependence, 114, 12–17.
  • Scior, K. 2011. Public awareness, attitudes and beliefs regarding intellectual disability: a systematic review. Research in Developmental Disabilities, 32, 2164–2182.
  • Skelton J., and Moore M. 1999 The role of self-advocacy in work for people with learning difficulties. Community, Work & Family 2, 133–145.
  • Smidt, Andy. Balandin, Susan. Sigafoos, Jeff. Reed, Vicki A.. The Kirkpatrick model: A useful tool for evaluating training outcomes. Journal of Intellectual & Developmental Disability. 2009. 34(3) 266–274. 10.1080/13668250903093125.
  • Stevens, M., and Harris, J. 2017. Social work support for employment of people with learning disabilities: Findings from the English Jobs First demonstration sites. Journal of Social Work, 17, 167–185.
  • Tartakovsky, E., Gafter-Shor, A., and Perelman-Hayim, M. 2013. Staff members of community services for people with intellectual disability and severe mental illness: Values, attitudes, and burnout. Research in Developmental Disabilities, 34, 3807–3821.
  • Thornicroft, G., Rose, D., and Kassam, A. 2007. Discrimination in health care against people with mental illness. International Review of Psychiatry, 19, 113–122.
  • Thornicroft, G., Mehta, N., Clement, S., Evans-Lacko, S., Doherty, M., Rose, D., Koschorke, M., Shidhaye, R., O'Reilly, C., and Henderson, C. 2016. Evidence for effective interventions to reduce mental-health-related stigma and discrimination. The Lancet, 387, 1123–1132.
  • Todd, S. 2000. Working in the public and private domains: staff management of community activities for and the identities of people with intellectual disability. Journal of Intellectual Disability Research, 44, 600–620.
  • Tsiantis, J., Diareme, S., and Kolaitis, G. 2000. The Leros PIKPA Asylum, deinstitutionalization and rehabilitation project. Journal of Learning Disabilities, 4, 281–292.
  • United Nations. 2006. Convention on the Rights of Persons with Disabilities (CRPD). Geneva: United Nations.
  • Van Asselt-Goverts, A. E., Embregts, P. J. C. M., and Hendriks, A. H. C. 2013. Structural and functional characteristics of the social networks of people with mild intellectual disabilities. Research in Developmental Disabilities, 34, 1280–1288.
  • Van Asselt-Goverts, A. E., Embregts, P. J. C. M., Hendriks, A. H. C., and Frielink, N. 2014. Experiences of support staff with expanding and strengthening social networks of people with mild intellectual disabilities. Journal of Community & Applied Social Psychology, 24, 111–124.
  • Van Boekel, L. C., Brouwers, E. P. M., Van Weeghel, J., and Garretsen, H. F. L. 2013. Stigma among health professionals towards patients with substance use disorders and its consequences for healthcare delivery: Systematic review. Drug and Alcohol Dependence, 131, 23–35.
  • van Oorsouw, Wietske M. W. J..Embregts, Petri J. C. M..Bosman, Anna M. T.. Evaluating staff training: Taking account of interactions between staff and clients with intellectual disability and challenging behaviour. Journal of Intellectual & Developmental Disability. 2013. 38(4) 356–364. 10.3109/13668250.2013.826787.
  • Van Oorsouw, W. M. W. J., Embregts, P. J. C. M., Bosman, A. M. T., and Jahoda, A. 2009. Training staff serving clients with intellectual disabilities: A meta-analysis of aspects determining effectiveness. Research in Developmental Disabilities, 30, 503–511.
  • Venema, E., Otten, S., and Vlaskamp, C. 2015. The efforts of direct support professionals to facilitate inclusion: The role of psychological determinants and work setting. Journal of Intellectual Disability Research, 59, 970–979.
  • Venema, E., Otten, S., and Vlaskamp, C. 2016. Direct support professionals and reversed integration of people with intellectual disabilities: Impact of attitudes, perceived social norms, and meta-evaluations. Journal of Policy and Practice in Intellectual Disabilities, 13, 41–49.
  • Wehmeyer, M. L., Davies, D. K., Tassé, M. J., and Stock, S. 2012. Support needs of adults with intellectual disability across domains: The role of technology. Journal of Special Eudcation and Technology, 27, 11–22.
  • Werner, S. Stawski, M. Polakiewicz, Y.& Levav, I.2013. Psychiatrists’ knowledge. training andattitudes regarding the care of individuals with intellectual disability.Journal of Intellectual Disability Research. 57(8) 774–782.
  • Werner, S. 2015. Stigma in the area of intellectual disabilities: Examining a conceptual model of public stigma. American Journal on Intellectual and Developmental Disabilities, 120, 460–475.
  • Wiese, M., Dew, A., Stancliffe, R. J., Howarth, G., and Balandin, S. 2013. “If and when?”: The beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57, 980–992.
  • Wong, P. K. S., and Wong, D. F. K. 2008. Enhancing staff attitudes, knowledge and skills in supporting the self-determination of adults with intellectual disability in residential settings in Hong Kong: a pretest-posttest comparison group design. Journal of Intellectual Disability Research, 52, 230–43.
  • Yazbeck, M., McVilly, K., and Parmenter, T. R. 2004. Attitudes toward people with intellectual disabilities. Journal of Disability Policy Studies, 15, 97–111.
  • Yool, L., Langdon, P. E., and Garner, K. 2003. The attitudes of a medium-secure unit staff toward the sexuality of adults with learning disabilities. Sexuality and Disability, 21, 137–149.