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Articles

Maintaining quality of life for people with intellectual disabilities during end-of-life in rural areas of Australia

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Pages 139-151 | Accepted 20 Mar 2022, Published online: 15 May 2022

References

  • Arvio, M., Salokivi, T., & Bjelogrlic-Laakso, N. (2017). Age at death in individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30(4), 782–785. https://doi.org/10.1111/jar.12269
  • Bittles, A., Petterson, B., Sullivan, S., Hussain, R., Glasson, E., & Montgomery, P. (2002). The influence of intellectual disability on life expectancy. The Journals of Gerontology Series A, 57(7), M470–M472. https://doi.org/10.1093/gerona/57.7.M470
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
  • Charmaz, K. (2006). Constructing ground theory: A practical guide through qualitative analysis. SAGE.
  • Department of Health. (2021). Health workforce locator. https://www.health.gov.au/resources/apps-and-tools/health-workforce-locator
  • Dew, A., Happ, V., Bulkeley, K., Bundy, A., Lincoln, M., Gallego, G., Brentnall, J., & Veitch, C. (2014). Rural carers of people with disabilities: Making choices to move or to stay. Research and Practice in Intellectual and Developmental Disabilities, 1(1), 60–70. https://doi.org/10.1080/23297018.2014.908481
  • Gallego, G., Dew, A., Lincoln, M., Bundy, A., Chedid, R. J., Bulkeley, K., Brentnall, J., & Veitch, C. (2017). Access to therapy services for people with disability in rural Australia: A carers’ perspective. Health & Social Care in the Community, 25(3), 1000–1011. https://doi.org/10.1111/hsc.12399
  • Glasson, E. J., Sullivan, S. G., Hussain, R., Petterson, B. A., Montgomery, P. D., & Bittles, A. H. (2002). The changing survival profile of people with Down’s Syndrome: Implications for genetic counselling. Clinical Genetics, 62(5), 390–393.
  • Hunt, K., Bernal, J., Worth, R., Shearn, J., Jarvis, P., Jones, E., Lowe, K., Madden, P., Barr, O., Forrester-Jones, R., Kroll, T., McCarron, M., Read, S., & Todd, S. (2020). End-of-life care in intellectual disability: A retrospective cross-sectional study. BMJ Supportive & Palliative Care, 10(4), 469–477. https://doi.org/10.1136/bmjspcare-2019-001985
  • Hussain, R., Janicki, M. P., Knox, M., Wark, S., & Parmenter, T. (2019). Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia. Journal of Intellectual & Developmental Disability, 44(2), 174–183. https://doi.org/10.3109/13668250.2017.1326589
  • Martin, B., & Healy, J. (2010). Who works in community services? A profile of Australian workforces in child protection, juvenile justice, disability services and general community services. https://www.acwa.org.au/wp-content/uploads/2020/12/Who-works-in-the-ommunity-services-sector-report.pdf
  • NDIS. (2020). Disability-related health supports operational guideline – What won’t the NDIS fund. https://www.ndis.gov.au/about-us/operational-guidelines/disability-related-health-supports-operational-guideline/disability-related-health-supports-operational-guideline-what-wont-ndis-fund
  • NDIS. (2021). Specialist disability accommodation. https://www.ndis.gov.au/providers/housing-and-living-supports-and-services/specialist-disability-accommodation
  • NSW Government – NSW Trustee and Guardian. (2020a). Who can be appointed as a guardian? https://www.publicguardian.justice.nsw.gov.au/Pages/publicguardian/pg_guardianship/pg_whoappoint.aspx
  • NSW Government – NSW Trustee and Guardian. (2020b). Public Guardian. https://www.publicguardian.justice.nsw.gov.au/
  • Palys, T. (2008). Purposive sampling. In L. M. Given (Ed.), The Sage encyclopedia of qualitative research methods (Vol.2). SAGE.
  • Read, S., & Elliott, D. (2007). Exploring a continuum of support for bereaved people with intellectual disabilities. Journal of Intellectual Disabilities, 11(2), 167–181.
  • Read, S., & Todd, S. (2010). Thinking about death and what it means: Conversations with people with ID. Journal of Applied Research in Intellectual Disabilities, 23, 408–418.
  • Ritchie, J., Lewis, J., McNaughton Nicholls, C., & Ormston, R. (2014). Qualitative research practice: A guide for social science students and researchers (2nd ed.). Sage Publications.
  • Sim, J. (1998). Collecting and analysing qualitative data: Issues raised by the focus group. Journal of Advanced Nursing, 28(2), 345–352. https://doi.org/10.1046/j.1365-2648.1998.00692.x
  • St John, W. (2004). Focus Group Interviews. In V. Minichiello, S. Sullivan, K. Greenwood, & R. Axford (Eds.), Handbook of research methods for nursing and health sciences 2nd Edition (pp. 447–461). Pearson.
  • Sullivan, S. G., Hussain, R., Glasson, E. J., & Bittles, A. H. (2007). The profile and incidence of cancer in Down syndrome. Journal of Intellectual Disability Research, 51(Pt 3), 228–231.
  • Todd, S. (2013). Being there: The experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(3), 215–230. https://doi.org/10.1111/jar.12024
  • Todd, S., Bernal, J., & Forrester-Jones, R. (2013). Death, dying and intellectual disability research. Journal of Applied Research in Intellectual Disabilities, 26(3), 183–185. https://doi.org/10.1111/jar.12027
  • van den Akker, M., Maaskant, M. A., & van der Meijden, R. J. (2006). Cardiac diseases in people with intellectual disability. Journal of Intellectual Disability Research, 50(Pt 7), 515–522.
  • Wark, S. (2018). Does intellectual disability research consider the potential impact of geographic location? Journal of Intellectual & Developmental Disability, 43(3), 362–369. https://doi.org/10.3109/13668250.2017.1310826
  • Wark, S., Hussain, R., & Edwards, H. (2013). Rural and remote area service provision for people aging with intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 62–70. https://doi.org/10.1111/jppi.12017
  • Wark, S., Hussain, R., & Edwards, H. (2015). Assisting individuals ageing with learning disability: Support worker perspectives. Tizard Learning Disability Review, 20(4), 213–222. https://doi.org/10.1108/TLDR-02-2015-0008
  • Wark, S., Hussain, R., Müller, A., Ryan, P., & Parmenter, T. (2010). Personal relationships during end-of-life care: Support staff view of issues for individuals with intellectual disability. Research in Developmental Disabilities, 87, 21–30.
  • Wark, S., Hussain, R., Müller, A., Ryan, P., & Parmenter, T. (2017). Challenges in providing end-of-life care for people with intellectual disability: Health services access. Journal of Applied Research in Intellectual Disabilities, 30(6), 1151–1159. https://doi.org/10.1111/jar.12408
  • Wark, S., Müller, A., Hussain, R., & Parmenter, T. (2016). Pain management during end-of-life care: Support for individuals with intellectual disabilities. Journal of Intellectual Disability Research, 60(7–8), 820.
  • Wiese, M., Dew, A., Stancliffe, R., Howarth, G., & 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(10), 980–992. https://doi.org/10.1111/j.1365-2788.2012.01593.x
  • Wiese, M., Stancliffe, R., Balandin, S., Howarth, G., & Dew, A. (2012). End-of-life care and dying: Issues raised by staff supporting older people with intellectual disability in community living services. Journal of Applied Research in Intellectual Disabilities, 25(6), 571–583.
  • Wiese, M., Stancliffe, R., Dew, A., Balandin, S., & Howarth, G. (2013). What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death. Journal of Intellectual Disability Research, 58(7), 679–690. https://doi.org/10.1111/jir.12065
  • Wiese, M., Stancliffe, R., Read, S., Jeltes, G., & Clayton, J. (2015). Learning about dying, death, and end-of-life planning: Current issues informing future actions. Journal of Intellectual and Developmental Disability, 40(2), 230–235. https://doi.org/10.3109/13668250.2014.998183
  • Wiese, M., & Tuffrey-Wijne, I. (2020). End-of-life choices. In R. J. Stancliffe, M. L. Wehmeyer, K. A. Shogren, & B. H. Abery (Eds.), Choice, preference, and disability: Promoting self-determination across the lifespan (pp. 317–335). Springer.

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