Complex lived experiences and hidden disability after spinal cord injury: a latent profile analysis of the Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey

Annette Kifley; Timothy J Geraghty; Mohit Arora; John Bourke; Ashley Craig; Ian D Cameron; Andrew Nunn; Ruth Marshall; James W Middleton

doi:10.1080/09638288.2023.2283101

Complex lived experiences and hidden disability after spinal cord injury: a latent profile analysis of the Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey

Disabil Rehabil. 2023 Nov 29:1-12. doi: 10.1080/09638288.2023.2283101. Online ahead of print.

Authors

Annette Kifley^{1

2}, Timothy J Geraghty^{3

4}, Mohit Arora^{1

2}, John Bourke^{1

2

5}, Ashley Craig^{1

2}, Ian D Cameron^{1

2}, Andrew Nunn⁶, Ruth Marshall^{7

8}, James W Middleton^{1

2

9

10}

Affiliations

¹ John Walsh Centre for Rehabilitation Research, Northern Sydney Local Health District, St Leonards, Sydney, Australia.
² Kolling Institute, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
³ Queensland Spinal Cord Injuries Service, Division of Rehabilitation, Princess Alexandra Hospital, Metro South Health, Woolloongabba, Australia.
⁴ The Hopkins Centre, Metro South Health and Menzies Health Institute Queensland, Griffith University, Brisbane, Australia.
⁵ Burwood Academy Trust, Christchurch, New Zealand.
⁶ Victorian Spinal Cord Service, Austin Health, Heidelberg, Australia.
⁷ South Australian Spinal Cord Injury Service, Central Adelaide Local Health Network, Adelaide, Australia.
⁸ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, Australia.
⁹ State Spinal Cord Injury Service, Agency for Clinical Innovation, St Leonards, Australia.
¹⁰ Spinal Outreach Service, Royal Rehab, Ryde, Australia.

PMID: 38018422
DOI: 10.1080/09638288.2023.2283101

Abstract

Purpose: To identify and examine subgroups of people with spinal cord injury (SCI) with different patterns of lived experience, and examine hidden impairments and disability among functionally independent and ambulant people.

Materials and methods: Latent profile analysis of population-based data from the Australian arm of the International Spinal Cord Injury (InSCI) Community survey (n = 1579).

Results: Latent subgroups reflected levels of functional independence and extent of problems with health, activity/participation, environmental barriers, and self-efficacy. Quality of life (QoL), psychological profiles, and activity/participation were often as good or better in participants who reported lower (vs. higher) functional independence alongside comparable burden of health problems and environmental barriers. QoL, mental health, and vitality reflected self-efficacy and problem burdens more closely than functional independence. Ambulant participants reported a substantial burden of underlying, potentially hidden impairments, with QoL and mental health similar to wheelchair users.

Conclusion: Hidden disability among more independent and/or ambulant people with SCI can affect well-being substantially. Early and ongoing access to support, rehabilitation, and SCI specialist services is important irrespective of cause, type, severity of injury, and level of functional independence. Improved access to SCI expertise and equity of care would help to improve early recognition and management of hidden disability.

Trial registration: Not applicable.

Keywords: International Classification of Functioning Disability and Health; Spinal cord injury; ambulation; functional independence; lived experience; physical functioning; quality of life.

Plain language summary

Hidden disability can substantially affect the well-being and quality of life of people with spinal cord injury (SCI) who appear to be functioning well and independently.Early and ongoing access to rehabilitation and SCI specialist services is important for people with SCI of any cause, type, severity, and level of functional independence.The potential for and implications of hidden disability are key considerations for the broader community of health practitioners who manage people with SCI, to ensure that appropriate referrals to specialist SCI services occur.Hidden disability is a key consideration in the design and implementation of disability support systems.