Stakeholders’ perspectives on how to improve the support for persons with an intellectual disability and challenging behaviors: a concept mapping study

References

• Ager, A. and O’May, F. 2001. Issues in the definition and implementation of “best practice” for staff delivery of interventions for challenging behaviour. Journal of Intellectual & Developmental Disability, 26, 243–256.
   Web of Science ®Google Scholar
• Armson, H., Elmslie, T., Roder, S. and Wakefield, J. 2015. Encouraging reflection and change in clinical practice: evolution of a tool. Journal of Continuing Education in the Health Professions, 35, 220–231.
   PubMed Web of Science ®Google Scholar
• Bell, D. M. and Espie, C. A. 2002. A primary investigation into staff satisfaction, and staff emotions and attitudes in a unit form men with learning disabilities and serious challenging behaviours. British Journal of Learning Disabilities, 30, 19–27.
   Google Scholar
• Bowring, D. L., Totsika, V., Hastings, R. P., Toogood, S. and Griffith, G. M. 2017. Challenging behaviours in adults with an intellectual disability: a total population study and exploration of risk indices. British Journal of Clinical Psychology, 56, 16–32.
   PubMed Web of Science ®Google Scholar
• Clarkson, R., Murphy, G.H., Coldwell, J. B. and Dawson, D. L. 2009. What characteristics do service users with intellectual disability value in direct support staff within residential forensic services? Journal of Intellectual & Developmental Disability, 34, 283–289.
   PubMed Web of Science ®Google Scholar
• Cox, A. D., Dube, C. and Temple, B. 2015. The influence of staff training on challenging behaviour in individuals with intellectual disability: a review. Journal of Intellectual Disabilities, 19, 69–82.
   PubMed Web of Science ®Google Scholar
• de Boer, M. E., Depla, M. F., Frederiks, B. J., Negenman, A. M., Habraken, J. M., van Randeraad-van der Zee, J., Embregts, P. J. C. M. and Hertogh, C. M. 2019. Involuntary care—capturing the experience of people with dementia in nursing homes: a concept mapping study. Aging & Mental Health, 23, 498–506.
   PubMed Web of Science ®Google Scholar
• Delespaul, P., Milo, M., Schalken, F., Boevink, W. and van Os, J. 2016. Goede GGZ! Nieuwe concepten, aangepaste taal en betere organisatie [Good mental health care! New concepts, adapted language and better organization]. Leusden, The Nederlands: Diagnosis Uitgevers.
   Google Scholar
• Embregts, P. J. C. M., Zijlmans, L. J., Gerits, L. and Bosman, A. M. 2019. Evaluating a staff training program on the interaction between staff and people with intellectual disability and challenging behaviour: an observational study. Journal of Intellectual & Developmental Disability, 44, 131–138.
   Web of Science ®Google Scholar
• Emerson, E. 2001. Challenging behavior. Analysis and intervention in people with severe intellectual disabilities. 2nd ed. Cambridge: Cambridge University Press.
   Google Scholar
• Emerson, E. and Bromley, J. 1995. The form and function of challenging behaviours. Journal of Intellectual Disability Research, 39, 388–398.
   PubMed Web of Science ®Google Scholar
• Emerson, E., Kiernan, C., Alborz, A., Reeves, D., Mason, H., Swarbrick, R., Mason, L. and Hatton, C. 2001. The prevalence of challenging behaviors: a total population study. Research in Developmental Disabilities, 22, 77–93.
   PubMed Web of Science ®Google Scholar
• Feldman, M. A., Atkinson, L., Foti-Gervais, L. and Condillac, R. 2004. Formal versus informal interventions for challenging behaviour in persons with intellectual disabilities. Journal of Intellectual Disability Research, 48, 60–68.
   PubMed Web of Science ®Google Scholar
• Giesbers, S. A. H., Hendriks, A. H. C., 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.
   PubMed Web of Science ®Google Scholar
• Griffith, G. M. and Hastings, R. 2013. He’s hard work, but he’s worth it. The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: a meta-synthesis of qualitative research. Journal of Applied Research in Intellectual Disabilities, 27, 401–419.
   PubMed Web of Science ®Google Scholar
• Griffith, G. M., Hutchinson, L. and Hastings, R. P. 2013. “I’m not a patient, I’m a person”: the experiences of individuals with intellectual disabilities and challenging behavior—a thematic synthesis of qualitative studies. Clinical Psychology: Science and Practice, 20, 469–488.
   Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Hastings, R. P., Allen, D., Baker, P., Gore, N. J., Hughes, J. C., McGill, P., Stephen, J. N. and Toogood, S. 2013. A conceptual framework for understanding why challenging behaviours occur in people with developmental disabilities. International Journal of Positive Behavioural Support, 3, 5–13.
   Google Scholar
• Hermsen, M. A., Embregts, P. J. C. M., Hendriks, A. H. C. and Frielink, N. 2014. The human degree of care. Professional loving care for people with a mild intellectual disability: an explorative study. Journal of Intellectual Disability Research, 58, 221–232.
   PubMed Web of Science ®Google Scholar
• Heyvaert, M., Maes, B. and Onghena, P. 2010. A meta‐analysis of intervention effects on challenging behaviour among persons with intellectual disabilities. Journal of Intellectual Disability Research, 54, 634–649.
   PubMed Web of Science ®Google Scholar
• Heyvaert, M., Saenen, L., Maes, B. and Onghena, P. 2014. Systematic review of restraint interventions for challenging behaviour among persons with intellectual disabilities: focus on effectiveness in single-case experiments. Journal of Applied Research in Intellectual Disabilities, 27, 493–510.
   PubMed Web of Science ®Google Scholar
• Jackson, R. 2011. Invited review: challenges of residential and community care: ‘the times they are a‐changin’. Journal of Intellectual Disability Research, 55, 933–944.
   PubMed Web of Science ®Google Scholar
• Jones, P., and Stenfert Kroese, B.  2008. and Stenfert Kroese, B. Serviceusers and Staff from Secure Intellectual Disability Settings: views on Threephysical Restraint Procedures. Journal of Intellectual Disabilities, 12, 229–237.
   Google Scholar
• Jones, P. and Stenfert Kroese, B. 2007. Service users’ views of physical restraint procedures in secure settings for people with learning disabilities. British Journal of Learning Disabilities, 35, 50–54.
   Google Scholar
• Kevan, F. 2003. Challenging behaviour and communication difficulties. British Journal of Learning Disabilities, 31, 75–80.
   Google Scholar
• Knotter, M. H., Stams, G. J. J. M., Moonen, X. M. H. and Wissink, I. B. 2016. Correlates of direct care staffs’ attitudes towards aggression of persons with intellectual disabilities. Research in Developmental Disabilities, 59, 294–305.
   PubMed Web of Science ®Google Scholar
• Kuis, E., Knoope, A. and Goossensen, A. 2010. Evaluatie van relatievorming in de laagdrempelige verslavingszorg [Quality of relationship-building in low-threshold addiction and mental health care]. Journal of Social Intervention: Theory and Practice, 19, 82–99.
   Google Scholar
• LaVigna, G. W. and Willis, T. J. 2012. The efficacy of positive behavioural support with the most challenging behaviour: the evidence and its implications. Journal of Intellectual & Developmental Disability, 37, 185–195.
   PubMed Web of Science ®Google Scholar
• McClean, B., Dench, C., Grey, I., Shanahan, S., Fitzsimons, E., Hendler, J. and Corrigan, M. 2005. Person focused training: a model for delivering positive behavioural supports to people with challenging behaviours. Journal of Intellectual Disability Research, 49, 340–352.
   PubMed Web of Science ®Google Scholar
• Muhr, T. 2005. Atlas.ti: the knowledge workbench (version 5.0.66). London: Scolari/Sage.
   Google Scholar
• Niemeijer, A., Frederiks, B., Depla, M., Eefsting, J. and Hertogh, C. 2013. The place of surveillance technology in residential care for people with intellectual disabilities: Is there an ideal model of application. Journal of Intellectual Disability Research, 57, 201–215.
   PubMed Web of Science ®Google Scholar
• Roeleveld, E., Embregts, P. J. C. M., Hendriks, A. H. C. and van den Bogaard, K. H. J. M. 2011. Zie mij als mens! Noodzakelijke competenties voor begeleiders volgens mensen met een verstandelijke beperking [See me as a person. Essential competencies for staff members according to people with intellectual disabilities]. Orthopedagogiek: Onderzoek en Praktijk, 50, 195–207.
   Google Scholar
• Ruud, M. P., Raanaas, R. K. and Bjelland, M. 2016. Caregivers’ perception of factors associated with a healthy diet among people with intellectual disability living in community residences: a concept mapping method. Research in Developmental Disabilities, 59, 202–210.
   PubMed Web of Science ®Google Scholar
• Severens, P. 1995. Handbook concept mapping using Ariadne. Utrecht, The Netherlands: National Centre for Mental Health (NcGv), Talcott bv.
   Google Scholar
• Sheehan, R., Hassiotis, A., Walters, K., Osborn, D., Strydom, A. and Horsfall, L. 2015. Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. British Medical Journal, 351, h4326.
   PubMed Web of Science ®Google Scholar
• Stevens, M. 2006. Moral positioning: service user experiences of challenging behaviour in learning disability services. British Journal of Social Work, 36, 955–978.
   Web of Science ®Google Scholar
• Stoesz, B. M., Shooshtari, S., Montgomery, J., Martin, T., Heinrichs, D. J. and Douglas, J. 2016. Reduce, manage or cope: a review of strategies for training school staff to address challenging behaviours displayed by students with intellectual/developmental disabilities. Journal of Research in Special Educational Needs, 16, 199–214.
   Web of Science ®Google Scholar
• Trochim, W. and Kane, M. 2005. Concept mapping: an introduction to structured conceptualization in health care. International Journal for Quality in Health Care, 17, 187–191.
   PubMed Web of Science ®Google Scholar
• van Bon-Martens, M. J. H., van de Goor, I. A. M. and van Oers, H. A. M. 2017. Concept mapping as a method to enhance evidence-based public health. Evaluation and Program Planning, 60, 213–228.
   PubMed Web of Science ®Google Scholar
• van den Bogaard, K. J. H. M., Lugtenberg, M., Nijs, S. and Embregts, P. J. C. M. 2019. Attributions of people with intellectual disabilities of their own or other clients’ challenging behavior: a systematic review of qualitative studies. Journal of Mental Health Research in Intellectual Disabilities, 1–26. doi: https://doi.org/10.1080/19315864.2019.1636911.
   Google Scholar
• van Oorsouw, W. M. W. J., Embregts, P. J. C. M. and Bosman, A. M. T. 2013. Quantitative and qualitative processes of change during staff-coaching sessions: an exploratory study. Research in Developmental Disabilities, 34, 1456–1467.
   PubMed Web of Science ®Google Scholar
• Wehmeyer, M. L. ed. 2013. The Oxford handbook of positive psychology and disability. Oxford: Oxford University Press.
   Google Scholar
• Willems, A. P. A. M., Embregts, P. J. C. M., Bosman, A. M. T. and Hendriks, A. H. C. 2014. The analysis of challenging relations: influences on interactive behaviour of staff towards clients with intellectual disabilities. Journal of Intellectual Disability Research, 58, 1072–1082.
   PubMed Web of Science ®Google Scholar
• Willems, A. P. A. M., Embregts, P. J. C. M., Hendriks, A. H. C. and Bosman, A. M. T. 2016. Towards a framework in interaction training for staff working with clients with intellectual disabilities and challenging behavior. Journal of Intellectual Disability Research, 60, 134–148.
   PubMed Web of Science ®Google Scholar
• Zijlmans, L. J. M., Embregts, P. J. C. M., Bosman, A. M. T. and Willems, A. P. A. M. 2012. The relationship among attributions, emotions, and interpersonal styles of staff working with clients with intellectual disabilities and challenging behavior. Research in Developmental Disabilities, 33, 1484–1494.
   PubMed Web of Science ®Google Scholar
• Zijlmans, L. J. M., Embregts, P. J. C. M., Gerits, L., Bosman, A. M. T. and Derksen, J. 2015. The effectiveness of staff training focused on increasing emotional intelligence and improving interaction between support staff and clients. Journal of Intellectual Disability Research, 59, 599–612.
   PubMed Web of Science ®Google Scholar