IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v19y2022i16p10144-d889543.html
   My bibliography  Save this article

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

Author

Listed:
  • Kathy Boschen

    (College of Medicine and Public Health, Flinders University, Adelaide, SA 5050, Australia)

  • Caroline Phelan

    (College of Nursing and Health Sciences, Flinders University, Adelaide, SA 5050, Australia)

  • Sharon Lawn

    (College of Medicine and Public Health, Flinders University, Adelaide, SA 5050, Australia)

Abstract

This research aimed to map evidence about system supports and gaps for Australians with psychosocial disabilities and life-limiting diagnoses. A scoping review of available policy documents, academic, and grey literature was completed to discover key characteristics of this concept and provide context around the phenomenon. Our focus was on Australia’s National Disability Insurance Scheme (NDIS), a key reform providing support to the disability population nationally. No peer-reviewed or grey literature was retrieved on the phenomena. Therefore, three lines of enquiry were developed: experiences of NDIS participants living with psychosocial disabilities; the death, dying, and palliative care supports and experiences of NDIS participants of any disability type; and the experiences for people living with severe and persistent mental illness (SPMI) and life-limiting diagnoses. Five themes were identified: (1) the person; (2) advocacy; (3) informal supports; (4) formal supports; and (5) existing research. NDIS participants living with SPMI and their informal and formal support systems are still struggling to navigate the NDIS. While there are no specific publications about their end-of-life experiences, people with SPMI often experience poor end-of-life outcomes. Rigorous research into their death, dying, and palliative care experiences is needed to inform improved support to them, including their end-of-life care.

Suggested Citation

  • Kathy Boschen & Caroline Phelan & Sharon Lawn, 2022. "NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review," IJERPH, MDPI, vol. 19(16), pages 1-23, August.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:16:p:10144-:d:889543
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/19/16/10144/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/19/16/10144/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Terry Carney, 2015. "Supported Decision-Making for People with Cognitive Impairments: An Australian Perspective?," Laws, MDPI, vol. 4(1), pages 1-23, January.
    2. Commission, Productivity, 2011. "Disability Care and Support," Inquiry Reports, Productivity Commission, Government of Australia, volume 0, number 54, July.
    3. Waters, Rebecca A. & Buchanan, Angus, 2017. "An exploration of person-centred concepts in human services: A thematic analysis of the literature," Health Policy, Elsevier, vol. 121(10), pages 1031-1039.
    4. Government of India, 2017. "National Health Policy 2017," Working Papers id:11664, eSocialSciences.
    5. Souza, Flavio & Duff, Gordon & Swait, Joffre, 2021. "“Whose plan is it?” understanding how the goal pursuit of consumers and carers influence choices in the australian disability sector," Journal of choice modelling, Elsevier, vol. 40(C).
    6. Pádraic Fleming & Sinead McGilloway & Marian Hernon & Mairead Furlong & Siobhain O'Doherty & Fiona Keogh & Tim Stainton, 2019. "Individualized funding interventions to improve health and social care outcomes for people with a disability: A mixed‐methods systematic review," Campbell Systematic Reviews, John Wiley & Sons, vol. 15(1-2), June.
    7. Brenda Happell & Karen Wilson & Chris Platania‐Phung & Robert Stanton, 2017. "Filling the gaps and finding our way: family carers navigating the healthcare system to access physical health services for the people they care for," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(13-14), pages 1917-1926, July.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Mac Domhnaill, Ciarán & Lyons, Seán & McCoy, Selina, 2020. "Specialist support for persons with disabilities living in the community: Review of international practice," Research Series, Economic and Social Research Institute (ESRI), number SUSTAT97.
    2. Tajul Masron & Mduduzi Biyase & Talent Zwane & Thomas Udimal & Frederich Kirsten, 2023. "Ecological footprint and population health outcomes: an analysis of E7 countries," Economics Working Papers edwrg-07-2023, College of Business and Economics, University of Johannesburg, South Africa, revised 2023.
    3. Shawhan, Daniel L. & Picciano, Paul D., 2019. "Costs and benefits of saving unprofitable generators: A simulation case study for US coal and nuclear power plants," Energy Policy, Elsevier, vol. 124(C), pages 383-400.
    4. Shu Yan & Lizi Pan & Yan Lu & Juan Chen & Ting Zhang & Dongzi Xu & Zhaolian Ouyang, 2023. "Towards Sustainable Drug Supply in China: A Bibliometric Analysis of Drug Reform Policies," Sustainability, MDPI, vol. 15(13), pages 1-20, June.
    5. John Walsh & Sarah Johnson, 2013. "Development and Principles of the National Disability Insurance Scheme," Australian Economic Review, The University of Melbourne, Melbourne Institute of Applied Economic and Social Research, vol. 46(3), pages 327-337, September.
    6. Bozena Wielgoszewska & Alex Bryson & Monica Costa-Dias & Francesca Foliano & Heather Joshi & David Wilkinson, 2021. "Exploring the Reasons for Labour Market Gender Inequality a Year into the Covid-19 Pandemic: Evidence from the UK Cohort Studies," DoQSS Working Papers 21-23, Quantitative Social Science - UCL Social Research Institute, University College London.
    7. Shi, Wunan & Wouters, Olivier J. & Liu, Gordon & Mossialos, Elias & Yang, Xiuyun, 2020. "Association between provincial income levels and drug prices in China over the period 2010–2017," Social Science & Medicine, Elsevier, vol. 263(C).
    8. Katie Adamek & Sarah Bardin & So O'Neil & Dara Lee Luca, "undated". "Accelerating Teen Pregnancy Prevention in Phillips County, Arkansas and Coahoma County, Mississippi," Mathematica Policy Research Reports 7fda86cbb1bf4303a84f466e8, Mathematica Policy Research.
    9. Han, Lu & Koenig-Archibugi, Mathias & Opsahl, Tore, 2018. "The social network of international health aid," Social Science & Medicine, Elsevier, vol. 206(C), pages 67-74.
    10. Burieva Nigora Hasanovna, 2019. "Models of Financing and Organization of Health Care System-International Experience," International Journal of Management Science and Business Administration, Inovatus Services Ltd., vol. 5(5), pages 7-12, July.
    11. Carolina Cortes-Herrera & Graciela Artavia & Silvia Quiros-Fallas & Eduardo Calderon-Calvo & Astrid Leiva & Josue Vasquez-Flores & Fabio Granados-Chinchilla, 2023. "Analysis of Minerals in Foods: A Three-year Survey from Costa Rican Market Products," Journal of Food Research, Canadian Center of Science and Education, vol. 12(1), pages 1-9, January.
    12. Victoria S S Wong & Lauro Nathaniel Avalos & Michael L Callaham, 2019. "Industry payments to physician journal editors," PLOS ONE, Public Library of Science, vol. 14(2), pages 1-11, February.
    13. Ya-Ling Lin & Wen-Yi Chen & Shwn-Huey Shieh, 2020. "Age Structural Transitions and Copayment Policy Effectiveness: Evidence from Taiwan’s National Health Insurance System," IJERPH, MDPI, vol. 17(12), pages 1-17, June.
    14. Kyeong-Rae Kim & Jae-Eun Park & So-Young Lim & Ho Kim & Il-Tae Jang & Kwang-Yeol Lee, 2020. "Effects of Nutrition on Osteoarthritis in Women Over the 50 Years: Using the Korea National Health and Nutrition Examination Survey (KNHANES) Data," Global Journal of Health Science, Canadian Center of Science and Education, vol. 12(7), pages 1-29, June.
    15. Henry Ergas, 2013. "National Disability Insurance Scheme Funding: The Case for Hypothecation," Australian Economic Review, The University of Melbourne, Melbourne Institute of Applied Economic and Social Research, vol. 46(3), pages 338-344, September.
    16. Robert John Kolesar & Peter Bogetoft & Vanara Chea & Guido Erreygers & Sambo Pheakdey, 2022. "Advancing universal health coverage in the COVID-19 era: an assessment of public health services technical efficiency and applied cost allocation in Cambodia," Health Economics Review, Springer, vol. 12(1), pages 1-20, December.
    17. Segadlo, Nadine, 2021. "Navigating through an external agenda and internal preferences: Ghana's national migration policy," IDOS Discussion Papers 8/2021, German Institute of Development and Sustainability (IDOS).
    18. Liu, Chun & Wang, Lian, 2021. "Who is left behind? Exploring the characteristics of China's broadband non-adopting families," Telecommunications Policy, Elsevier, vol. 45(9).
    19. Townsend, Belinda & Schram, Ashley & Labonté, Ronald & Baum, Fran & Friel, Sharon, 2019. "How do actors with asymmetrical power assert authority in policy agenda-setting? A study of authority claims by health actors in trade policy," Social Science & Medicine, Elsevier, vol. 236(C), pages 1-1.
    20. Nandagiri, Rishita, 2021. "What’s so troubling about ‘voluntary’ family planning anyway? A feminist perspective," LSE Research Online Documents on Economics 112535, London School of Economics and Political Science, LSE Library.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:19:y:2022:i:16:p:10144-:d:889543. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.