Personalising Support through Communication between People with Intellectual Disabilities and their Support Workers
References
- Balcom, Sarah, Shelley Doucet, and Anik Dubé. 2021. “Observation and Institutional Ethnography: Helping Us to See Better.” Qualitative Health Research 31(8): 1534–1541. DOI: 10.1177/10497323211015966
- Bigby, Christine, and Jacinta Douglas. 2020.
“Supported Decision Making.” In Choice, Preference, and Disability, Positive Psychology and Disability Series, edited by Roger J. Stancliffe, Michael L. Wehmeyer, Kerry A. Shogren, and Brian H. Abery, 27–43. Cham: Springer Nature. DOI: 10.1007/978-3-030-35683-5_2 - Bradshaw, Jill. 2001. “Complexity of Staff Communication and Reported Level of Understanding Skills in Adults with Intellectual Disability.” Journal of Intellectual Disability Research 45(3): 233–243. DOI: 10.1046/j.1365-2788.2001.00318.x
- Braun, Virginia, and Victoria Clarke. 2014. “What Can ‘Thematic Analysis’ Offer Health and Wellbeing Researchers?” International Journal of Qualitative Studies on Health and Well-being 9: 1–2. DOI: 10.3402/qhw.v9.26152
- Carey, Gemma, Eleanor Malbon, Sue Olney, and Daniel Reeders. 2018. “The Personalisation Agenda: The Case of the Australian National Disability Insurance Scheme.” International Review of Sociology 28(1): 20–34. DOI: 10.1080/03906701.2018.1425084
- Cebulla, Andreas, and Rong Zhu. 2016. “Disability, and Social and Economic Inclusion: Who Is in and out of the Australian National Disability Insurance Scheme?” Scandinavian Journal of Disability Research 18(3): 256–268. DOI: 10.1080/15017419.2015.1064026
- Christensen, Karen. 2009. “In(ter)dependent Lives.” Scandinavian Journal of Disability Research 11(2): 117–130. DOI: 10.1080/15017410902830553
- Christensen, Karen. 2012. “Towards Sustainable Hybrid Relationships in Cash-for-Care Systems.” Disability & Society 27(3): 399–412. DOI: 10.1080/09687599.2012.654990
- Christensen, Karen, and Doria Pilling. 2014. “Policies of Personalisation in Norway and England: On the Impact of Political Context.” Journal of Social Policy 43(03): 479–496. DOI: 10.1017/S0047279414000257
- Christensen, Karen, Ingrid Guldvik, and Monica Larsson. 2013. “Active Social Citizenship: The Case of Disabled Peoples’ Rights to Personal Assistance.” Scandinavian Journal of Disability Research 16(S1): 19–33. DOI: 10.1080/15017419.2013.820665
- Cutcliffe, John R., and Paul Ramcharan. 2002. “Leveling the Playing Field? Exploring the Merits of the Ethics-as-Process Approach for Judging Qualitative Research Proposals.” Qualitative Health Research 12(7): 1000–1010. DOI: 10.1177/104973202129120313
- Dalton, Caroline, and John Sweeney. 2013. “Communication Supports in Residential Services for People with an Intellectual Disability.” British Journal of Learning Disabilities 41(1): 22–30. DOI: 10.1111/j.1468-3156.2011.00717.x
- Engelhardt, Meike. 2021. “‘Unsere Arbeit hat viel Detektivisches’-Zur Interkation von Betreuenden mit unvertrauten Personen mit schwerer und mehrfacher Behinderung (‘In Many Ways, our Work is Similar to That of Detectives’—Interaction of Caregivers with Unfamiliar Persons with PIMD’).” Vierteljahresschrift für Heilpädagogik und ihre Nachbargebiete 90: 1–20. DOI: 10.2378/vhn2021.art34d
- Fisher, Karen R., Christiane Purcal, Anna Jones, Deborah Lutz, Sally Robinson, and Rosemary Kayess. 2019. “What Place is There for Shared Housing with Individualized Disability Support?.” Disability and Rehabilitation 43(1): 60–68. DOI: 10.1080/09638288.2019.1615562
- Fisher, Karen R., Sally Robinson, Kate Neale, Anne Graham, Kelley Johnson, Laura Davy, and Edward Hall. 2021. “Impact of Organisational Practices on the Relationships between Young People with Disabilities and Paid Social Support Workers.” Journal of Social Work 21(6): 1377–1398. DOI: 10.1177/1468017320954351
- Forster, Sheridan. 2020.
“Approaching a Person with Profound Intellectual and Multiple Disabilities: What Do You Think, What Do You Do?” In Belonging for People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion, edited by Melanie Nind and Iva Strnadová, 133–158, London: Routledge. DOI: 10.4324/9780429260711-14 - Forster, Sheridan, and Teresa Iacono. 2008. “Disability Support Workers’ Experience of Interaction with a Person with Profound Intellectual Disability.” Journal of Intellectual and Developmental Disability 33(2): 137–147. DOI: 10.1080/13668250802094216
- Gomez-Victoria, Nora, and Nora Pava-Ripoll. 2021. “Why Privilege a Single Form of Communication if There Are Many?” Scandinavian Journal of Disability Research 23(1): 236–246. DOI: 10.16993/sjdr.808
- Gormley, Jessica, and Susan Koch Fager. 2021. “Personalization of Patient-Provider Communication across the Lifespan.” Topics in Language Disorders 41(3): 249–263. DOI: 10.1097/TLD.0000000000000255
- Graham, Katherine, Jenni Brooks, Jane Maddison, and Yvonne Birks. 2021. “Two Jobs in One Day: Exploring the Dynamics of Personal Assistance Relationships in the Workplace.” Scandinavian Journal of Disability Research 23(1): 147–157. DOI: 10.16993/sjdr.761
- Guldvik, Ingrid. 2014.
“Facing Challenging Intimate Relationships.” In Migrant Care Workers: Searching for New Horizons, edited by Karen Christensen and Ingrid Guldvik, 147–172. Surrey: Ashgate Publishing Ltd. DOI: 10.4324/9781315595214-7 - Hall, Edward. 2009. “Being in Control: Personal Budgets and the New Landscape of Care for People with Learning Disabilities.” Mental Health Review Journal 14(2): 44–53. DOI: 10.1108/13619322200900014
- Hantrais, Linda. 2009. International Comparative Research: Theory, Methods and Practice. Basingstoke: Palgrave Macmillan. DOI: 10.1007/978-1-137-06884-2_5
- Hantrais, Linda. 2014. “Methodological Pluralism in International Comparative Research.” International Journal of Social Research Methodology 17(2): 133–145. DOI: 10.1080/13645579.2014.892656
- Hemsley, Bronwyn, Jeff Sigafoos, Susan Balandin, Ralph Forbes, Christine Taylor, Vanessa A. Green, and Trevor Parmenter. 2001. “Nursing the Patient with Severe Communication Impairment.” Journal of Advanced Nursing 35(6): 827–835. DOI: 10.1046/j.1365-2648.2001.01920.x
- Hemsley, Bronwyn, Susan Balandin, and Linda Worrall. 2012. “Nursing the Patient with Complex Communication Needs: Time as a Barrier and a Facilitator to Successful Communication in Hospital.” Journal of Advanced Nursing 68(1): 116–126. DOI: 10.1111/j.1365-2648.2011.05722.x
- Horsell, Chris. 2020. “Problematising Disability: A Critical Policy Analysis of the Australian National Disability Insurance Scheme.” Australian Social Work 76(1): 47–59. DOI: 10.1080/0312407X.2020.1784969
- Hyett, Nerida, Amanda Kenny, and Virginia Dickson-Swift. 2014. “Methodology or Method? A Critical Review of Qualitative Case Study Reports.” International Journal of Qualitative Studies on Health and Well-being 9(1): 23606. DOI: 10.3402/qhw.v9.23606
- Iacono, Teresa, Emma Bould, Julie Beadle-Brown, and Christine Bigby. 2019. “An Exploration of Communication within Active Support for Adults with High and Low Support Needs.” Journal of Applied Research in Intellectual Disabilities 32(1): 61–70. DOI: 10.1111/jar.12502
- Kelly, Christine. 2016. Disability Politics and Care: The Challenge of Direct Funding. Vancouver: UBC Press. DOI: 10.59962/9780774830119
- Leece, Janet. 2010. “Paying the Piper and Calling the Tune: Power and the Direct Payment Relationship.” British Journal of Social Work 40(1): 188–206. DOI: 10.1093/bjsw/bcn085
- Leece, Janet, and Sheila Peace. 2010. “Developing New Understandings of Independence and Autonomy in the Personalised Relationship.” British Journal of Social Work 40(6): 1847–1865. DOI: 10.1093/bjsw/bcp105
- Lutz, Deborah. 2020. Support Work Relationships. Wiesbaden: Springer VS. DOI: 10.1007/978-3-658-29690-2
- Lutz, Deborah, Karen R. Fisher, and Sally Robinson. 2016. “Sharing the Focus: Engaging with Support Workers to Include People with Communication Needs in Research.” British Journal of Learning Disabilities 44(2): 138–145. DOI: 10.1111/bld.12126
- Martin, Andrew J., Iva Strnadová, Julie Loblinzk, Joanne C. Danker, and Therese M. Cumming. 2021. “The Role of Mobile Technology in Promoting Social Inclusion Among Adults with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 34(3): 840–851. DOI: 10.1111/jar.12869
- Martin, Anne-Marie, Tom Andrews, Juliet Goldbart, and Margaret Landers. 2022. “Reconciling Communication Repertoires: Navigating Interactions Involving Persons with Severe/Profound Intellectual Disability, a Classic Grounded Theory Study.” Journal of Intellectual Disability Research 66(4): 332–352. DOI: 10.1111/jir.12921
- Pearson, Charlotte, Richard Brunner, Tom Porter, and Nick Watson. 2020. “Personalisation and the Promise of Independent Living: Where Now for Cash, Care and Control for Disability Organisations across the UK?” Scandinavian Journal of Disability Research 22(1): 285–295. DOI: 10.16993/sjdr.742
- Porter, Tom, Tom Shakespeare, and Andrea Stöckl. 2021. “Trouble in Direct Payment Personal Assistance Relationships.” Work, Employment and Society. DOI: 10.1177/09500170211016972
- Ravneberg, Bodil, and Sylvia Söderström. 2017. Disability, Society and Assistive Technology. London: Routledge. DOI: 10.4324/9781315577425
- Robinson, Sally, Anne Graham, Karen R. Fisher, Kate Neale, Laura Davy, Kelley Johnson, and Edward Hall. 2021. “Understanding Paid Support Relationships: Possibilities for Mutual Recognition between Young People with Disability and Their Support Workers.” Disability & Society 36(9): 1423–1448. DOI: 10.1080/09687599.2020.1794797
- Robinson, Sally, Edward Hall, Karen R. Fisher, Anne Graham, Kelley Johnson, and Kate Neale. 2023. “Using the ‘In-Between’ to Build Quality in Support Relationships with People with Cognitive Disability: The Significance of Liminal Spaces and Time.” Social & Cultural Geography 24(1): 175–194. DOI: 10.1080/14649365.2021.1950824
- Rogers, Chrissie, and Geeta Ludhra. 2012.
“Research Ethics: Participation, Social Difference and Informed Consent.” . In Research and Research Methods for Youth Practitioners, edited by Simon Bradford and Fin Cullen, 43–65. London: Routledge. - Shakespeare, Tom. 2014.
“Personal Assistance as a Relationship.” In Disability Rights and Wrongs Revisited, edited by Tom Shakespeare, 173–187. New York: Routledge. DOI: 10.4324/9781315887456 - Shakespeare, Tom, Andrea Stöckl, and Tom Porter. 2018. “Metaphors to Work By: The Meaning of Personal Assistance in England.” International Journal of Care and Caring 2(2):165–179. DOI: 10.1332/239788218X15187915600658
- Shogren, Kerry A. 2020.
Self-determination, Preference, and Choice . In Choice, Preference, and Disability, Positive Psychology and Disability Series, edited by Roger J. Stancliffe, Michael L. Wehmeyer, Kerry A. Shogren, and Brian H. Abery, 27–43. Cham: Springer Nature. DOI: 10.1007/978-3-030-35683-5_2 - Smith, Dorothy E. 2005. Institutional Ethnography: A Sociology for People. Toronto: Rowman Altamira.
- Smith, Dorothy E. 2006. Institutional Ethnography as Practice. Oxford: Rowman & Littlefield Publishers.
- United Nations. 2006. “Convention on the Rights of Persons with Disabilities.” Accessed August 5, 2022.
https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf . - UNSW Australia. 2015.
UNSW Human Research Ethics. Risk Assessment and Application Form . Sydney: UNSW Australia. - Wacker, Elisabeth, Gudrun Wansing, and Markus Schäfers. 2009. Personenbezogene Unterstützung und Lebensqualität: Teilhabe mit einem persönlichen Budget (Person-centred support and quality of life: Participation with a personal budget). Wiesbaden: Springer VS.
DOI: https://doi.org/10.16993/sjdr.980 | Journal eISSN: 1745-3011
Language: English
Page range: 295 - 308
Submitted on: Oct 23, 2022
Accepted on: Sep 27, 2023
Published on: Nov 2, 2023
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2023 Deborah Luise Lutz, Karen Raewyn Fisher, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.