Navigating the transition from hospital to community: experiences of people with acquired disability and complex needs
Ella-Rose Minter
A B * , Lee Cubis A B , Eve Roseingrave A B , Libby Witts A B , Di Winkler A B and Jacinta Douglas A B
A
B
Abstract
People with disability and complex needs frequently face long hospitalisations. They also risk being discharged without adequate housing and supports. Hospital discharge planning is crucial for a safe and effective transition to the community. The aim of this qualitative, phenomenological study was to understand the lived experience of hospital discharge and returning to the community for people with acquired disability and complex needs.
Fifteen individuals (80% men) aged 31–66 years, recently discharged from hospital and eligible for access to the National Disability Insurance Scheme were interviewed 1 month post-hospital discharge.
Three primary themes were developed: being in hospital, preparing to return to the community and returning to the community. Participants shared their experiences navigating the hospital system, disability services and the National Disability Insurance Scheme. They identified factors that facilitated their community integration and highlighted barriers that hindered their ability to effectively navigate hospital and community settings.
The current study findings underscore the complex interplay between hospital discharge and the transition back to the community for people with acquired disability and complex needs. These findings also highlight opportunities to co-design solutions that improve the experience of leaving hospital and preparing for life after discharge.
Keywords: acquired disability, allied health, coordination, discharge planning, hospitalisation, lived experience, National Disability Insurance Scheme, phenomenology, support needs.
References
Abrahamson V, Jensen J, Springett K, Sakel M (2017) Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study. Disability and Rehabilitation 39(17), 1683-1694.
| Crossref | Google Scholar | PubMed |
Barry S, Knox L, Douglas JM (2019) “Time’s Up”: The Experience of Entering Residential Aged Care for Young People with Acquired Neurological Disorders and Their Families. Brain Impairment 20(1), 37-48.
| Crossref | Google Scholar |
Bohan JK, Nielsen M, Watter K, Kennedy A (2023) “It gave her that soft landing”: Consumer perspectives on a transitional rehabilitation service for adults with acquired brain injury. Neuropsychological Rehabilitation 33(6), 1144-1173.
| Crossref | Google Scholar | PubMed |
Borg DN, Nielsen M, Kennedy A, Drovandi C, Beadle E, Bohan JK, Watter K, Foster MM, Fleming J (2020) The effect of access to a designated interdisciplinary post-acute rehabilitation service on participant outcomes after brain injury. Brain Injury 34(10), 1358-1366.
| Crossref | Google Scholar | PubMed |
Braaf S, Beck B, Callaway L, Ponsford J, Gabbe BJ (2018) The Residential Status of Working Age Adults Following Severe Traumatic Brain Injury. Brain Impairment 19(3), 201-214.
| Crossref | Google Scholar |
Braithwaite J, Churruca K, Ellis LA (2017) Can we fix the uber-complexities of healthcare? Journal of the Royal Society of Medicine 110(10), 392-394.
| Crossref | Google Scholar | PubMed |
Buist MD, Jaffray L, Bell E, Hanna L, Weinstein P, Kumar S, Grimmer K (2014) Utilisation of beds on the general medical unit by “non-acute medical” patients: a retrospective study of incidence and cost in two Tasmanian regional medical hospital units. Internal Medicine Journal 44(2), 171-177.
| Crossref | Google Scholar | PubMed |
Collings S, Dew A, Dowse L (2016) Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme. Journal of Intellectual & Developmental Disability 41(3), 272-276.
| Crossref | Google Scholar |
Commonwealth of Australia (2023) Working together to deliver the NDIS. NDIS Review: Final Report. Available at https://www.ndisreview.gov.au/sites/default/files/resource/download/working-together-ndis-review-final-report.pdf
Conti A, Garrino L, Montanari P, Dimonte V (2016) Informal caregivers’ needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disability and Rehabilitation 38(2), 159-167.
| Crossref | Google Scholar | PubMed |
Cubis L, Roseingrave E, Gosden-Kaye EZ, Winkler D, Douglas J (2024) “Well, what are you going to do when you’re out there?”: a scoping review of successful hospital discharge for people with acquired disability and complex needs aged 18–65 years. Brain Impairment 25(1), IB23088.
| Crossref | Google Scholar |
Cvejic RC, Watkins TR, Walker AR, Reppermund S, Srasuebkul P, Draper B, Withall A, Winkler D, Honan I, Mackechnie D, Trollor J (2022) Factors associated with discharge from hospital to residential aged care for younger people with neuropsychiatric disorders: an exploratory case–control study in New South Wales, Australia. BMJ Open 12(12), e065982.
| Crossref | Google Scholar | PubMed |
Destino L, Bennett D, Wood M, Acuna C, Goodman S, Asch SM, Platchek T (2019) Improving Patient Flow: Analysis of an Initiative to Improve Early Discharge. Journal of Hospital Medicine 14(1), 22-27.
| Crossref | Google Scholar | PubMed |
D’Or M, Kelly J, McCawley A-L (2021) The lived experience of younger people with a disability living in residential aged care facilities in Australia. Disability & Society 36(4), 618-635.
| Crossref | Google Scholar |
Douglas J, Winkler D, D’Cruz K, Oliver S, Liddicoat S, Naismith J, Wakim D (2024) Being a pioneer: a qualitative study of moving into individualised housing from the perspective of adults with neurological disability. Brain Impairment 25(1), IB23079.
| Crossref | Google Scholar |
Dwyer A, Heary C, Ward M, MacNeela P (2019) Adding insult to brain injury: young adults’ experiences of residing in nursing homes following acquired brain injury. Disability and Rehabilitation 41(1), 33-43.
| Crossref | Google Scholar | PubMed |
Fisher F, Andrews S, Churchyard A, Mathers S (2012) Home or Residential Care? The Role of Behavioral and Psychosocial Factors in Determining Discharge Outcomes for Inpatients with Huntington’s Disease. Journal of Huntington’s Disease 1(2), 187-193.
| Crossref | Google Scholar | PubMed |
Fitts MS, Bird K, Gilroy J, Fleming J, Clough AR, Esterman A, Maruff P, Fatima Y, Bohanna I (2019) A Qualitative Study on the Transition Support Needs of Indigenous Australians Following Traumatic Brain Injury. Brain Impairment 20(2), 137-159.
| Crossref | Google Scholar |
Foster MM, Borg DN, Houston V, Ehrlich C, Harre D, Lau G, Geraghty TJ (2022) Planning with care complexity: Factors related to discharge delays of hospitalised people with disability. Health & Social Care in the Community 30(6), 4992.
| Crossref | Google Scholar | PubMed |
Gonçalves-Bradley DC, Lannin NA, Clemson L, Cameron ID, Shepperd S (2022) Discharge planning from hospital. Cochrane Database of Systematic Reviews 2(2), CD000313.
| Crossref | Google Scholar | PubMed |
Gronda H, Ware V-A, Vitis L (2011) What makes a difference? Building a foundation for nationally consistent outcome measures. Australian Housing and Urban Research Institute (AHURI). Available at: https://eprints.qut.edu.au/216574/
Haslam C, Holme A, Haslam SA, Iyer A, Jetten J, Williams WH (2008) Maintaining group memberships: Social identity continuity predicts well-being after stroke. Neuropsychological Rehabilitation 18(5–6), 671-691.
| Crossref | Google Scholar | PubMed |
Holloway M, Orr D, Clark-Wilson J (2019) Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK. Brain Injury 33(4), 401-411.
| Crossref | Google Scholar | PubMed |
Houston V, Foster M, Borg DN, Nolan M, Seymour-Jones A (2020) From Hospital to Home with NDIS Funded Support: Examining Participant Pathway Timeframes Against Discharge Expectations. Australian Social Work 73(2), 175-190.
| Crossref | Google Scholar |
Jolliffe L, Morarty J, Hoffmann T, Crotty M, Hunter P, Cameron ID, Li X, Lannin NA (2019) Using audit and feedback to increase clinician adherence to clinical practice guidelines in brain injury rehabilitation: A before and after study. PLoS One 14(3), e0213525.
| Crossref | Google Scholar | PubMed |
Larsson-Lund M, Pettersson A, Strandberg T (2022) Team-based rehabilitation after traumatic brain injury: a qualitative synthesis of evidence of experiences of the rehabilitation process. Journal of Rehabilitation Medicine 54, jrm00253.
| Crossref | Google Scholar | PubMed |
Laurie K, Foster MM, Borg DN, Gustafsson L (2023) Perceived service adequacy and unmet need after discharge from brain injury rehabilitation. Disability and Rehabilitation 45(20), 3252-3261.
| Crossref | Google Scholar | PubMed |
McGuinness SL, Josphin J, Eades O, Clifford S, Fisher J, Kirkman M, Russell G, Hodgson CL, Kelsall HL, Lane R, Skouteris H, Smith KL, Leder K (2022) Organizational responses to the COVID-19 pandemic in Victoria, Australia: A qualitative study across four healthcare settings. Frontiers in Public Health 10, 965664.
| Crossref | Google Scholar | PubMed |
McIntyre D, Fleming J, Foster M, Tweedy S (2017) Experiences of adults with high-care needs and their family members with housing and support pathways in Australia. Disability and Rehabilitation 39(18), 1829-1839.
| Crossref | Google Scholar | PubMed |
Nakling AE, Aarsland D, Næss H, Wollschlaeger D, Fladby T, Hofstad H, Wehling E (2017) Cognitive Deficits in Chronic Stroke Patients: Neuropsychological Assessment, Depression, and Self-Reports. Dementia and Geriatric Cognitive Disorders Extra 7(2), 283-296.
| Crossref | Google Scholar | PubMed |
Nas K, Yazmalar L, Şah V, Aydın A, Öneş K (2015) Rehabilitation of spinal cord injuries. World Journal of Orthopedics 6(1), 8-16.
| Crossref | Google Scholar | PubMed |
NDIS (2021a) What is the NDIS? Available at https://www.ndis.gov.au/understanding/what-ndis
NDIS (2021b) Support Coordination. Available at https://www.ndis.gov.au/participants/using-your-plan/who-can-help-start-your-plan/support-coordination
New PW (2015) Prospective study of barriers to discharge from a spinal cord injury rehabilitation unit. Spinal Cord 53(5), 358-362.
| Crossref | Google Scholar | PubMed |
Oliver S, Gosden-Kaye EZ, Jarman H, Winkler D, Douglas JM (2020) A scoping review to explore the experiences and outcomes of younger people with disabilities in residential aged care facilities. Brain Injury 34(11), 1446-1460.
| Crossref | Google Scholar | PubMed |
Olver JH, Ponsford JL, Curran CA (1996) Outcome following traumatic brain injury: a comparison between 2 and 5 years after injury. Brain Injury 10(11), 841-848.
| Crossref | Google Scholar | PubMed |
Rankin J, Regan S (2004) Meeting complex needs in social care. Housing, Care and Support 7(3), 4-8.
| Crossref | Google Scholar |
Redfern H, Burton J, Lonne B, Seiffert H (2016) Social Work and Complex Care Systems: The Case of People Hospitalised with a Disability. Australian Social Work 69(1), 27-38.
| Crossref | Google Scholar |
Rojas-García A, Turner S, Pizzo E, Hudson E, Thomas J, Raine R (2018) Impact and experiences of delayed discharge: A mixed-studies systematic review. Health Expectations 21(1), 41-56.
| Crossref | Google Scholar | PubMed |
Saks M, Allsop J (2020) ‘Researching Health: Qualitative, Quantitative and Mixed Methods’, 3rd edn. (SAGE publication Ltd.) 10.3399/bjgp20X708677
Schrage T, Thomalla G, Härter M, Lebherz L, Appelbohm H, Rimmele DL, Kriston L (2023) Predictors of Discharge Destination After Stroke. Neurorehabilitation and Neural Repair 37(5), 307-315.
| Crossref | Google Scholar | PubMed |
Skinner M, Quinn R, Nance J, Wright S, Kendall M (2023) A case study approach to understanding the pathway to individualised funded supports under the National Disability Insurance Scheme for community-dwelling individuals with acquired brain injury. Brain Impairment 24(3), 489-507.
| Crossref | Google Scholar | PubMed |
Spagnolo J, Gautier L, Seppy M, D’Souza NA (2020) Re-thinking global and public health projects during the COVID-19 pandemic context: Considerations and recommendations for early- and not-so-early-career researchers. Social Sciences & Humanities Open 2(1), 100075.
| Crossref | Google Scholar |
Stroke Foundation (2024) Australian and New Zealand Living Clinical Guidelines for Stroke Management – Chapter 7 of 8: Discharge Planning and Transfer of Care. Available at https://files.magicapp.org/guideline/0cbc3abb-7cf5-46f7-91a7-ab4f6f9765f9/published_guideline_9006-5_11.pdf
Tabuteau-Harrison SL, Haslam C, Mewse AJ (2016) Adjusting to living with multiple sclerosis: The role of social groups. Neuropsychological Rehabilitation 26(1), 36-59.
| Crossref | Google Scholar | PubMed |
Willis K, Ezer P, Lewis S, Bismark M, Smallwood N (2021) “Covid Just Amplified the Cracks of the System”: Working as a Frontline Health Worker during the COVID-19 Pandemic. International Journal of Environmental Research and Public Health 18(19), 10178.
| Crossref | Google Scholar | PubMed |
World Health Organisation (2023) ‘WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions.’ (World Health Organisation: Geneva) Available at https://iris.who.int/bitstream/handle/10665/367340/9789240073074-eng.pdf?sequence=1
Wright CJ, Colley J, Knudsen K, Kendall E (2019) Housing for People with an Acquired Brain or Spinal Injury: Mapping the Australian Funding Landscape. International Journal of Environmental Research and Public Health 16(16), 2822.
| Crossref | Google Scholar | PubMed |
