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
Creators: name: Kifley, Annette
name: Geraghty, Timothy J.
name: Arora, Mohit
name: Bourke, John
name: Craig, Ashley
name: Cameron, Ian D.
name: Nunn, Andrew
name: Marshall, Ruth
name: Middleton, James W.
Publisher: name: Taylor & Francis
Year: 2023
Subjects: Molecular Biology
Neuroscience
Cancer
Science Policy

description: 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. Latent profile analysis of population-based data from the Australian arm of the International Spinal Cord Injury (InSCI) Community survey (<i>n</i> = 1579). 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 (<i>vs.</i> 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. 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. Not applicable. 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. 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.