‘From Superman to Barely Can:’ The Experience of Ageing for Australians With Spinal Cord Injury Sustained Below the Age of 65—A Qualitative Study
ABSTRACT Background Although ageing is universal, spinal cord injury (SCI) intensifies age‐related physical, psychosocial, cognitive, and functional challenges, with greater consequences for independence and quality of life. Improved life expectancy exposes limitations in prevailing ‘ageing well’ frameworks that exclude disability. Methods This qualitative study used a phenomenological approach. Semi‐structured interviews were conducted online with community‐dwelling adults aged ≥ 50 years who sustained SCI before age 65 and at least 2 years previously, and carers of people who met these criteria. Interviews were recorded, transcribed verbatim, and analysed thematically. Results Twenty‐five interviews were completed (22 people with SCI and 3 carers). Participants described ageing as inevitable but distinctly shaped by SCI. Three themes captured their experiences: (1) Compounding vulnerabilities: the experience of accelerated ageing , describing progressive bodily change, health instability, and adjustment to ageing; (2) Converging impacts of biological change and policy gaps , highlighting cumulative functional impacts alongside challenges navigating services and environmental and attitudinal barriers; and (3) Ageing with meaning through participation , emphasising agency, self‐advocacy, and maintaining engagement in work, leisure, and social roles. Adequate disability funding and health and system literacy supported participation, whereas limited SCI‐specific knowledge within health and care services and resource constraints undermined ageing well. Conclusions Ageing well with SCI is shaped by individual adaptation and modifiable system‐level factors. Policies that ensure equitable resourcing, strengthen ageing (including SCI‐competent services), and support meaningful participation may improve quality of life as this population grows. Lived Experience or Public Contribution People with lived experience of spinal cord injury were actively involved throughout the research process. A consumer advisory panel (CAP) was established following a national expression‐of‐interest process and comprised eight individuals with lived experience, one carer and a researcher with lived experience. The CAP contributed to study design, recruitment strategies, and interpretation and validation of findings, and supported aspects of data analysis. Panel members represented diverse injury characteristics, time since injury and environmental contexts, enabling identification and consideration of assumptions and biases. In addition, people with lived experience participated as interviewees in the study. Trial Registration This study was not a clinical trial.
Authors
- Lynette A. Mackenzie (ORCID: https://orcid.org/0000-0002-1597-2051)
- Jacqueline Wesson (ORCID: https://orcid.org/0000-0002-4359-2443)
- Emma Tan (ORCID: https://orcid.org/0009-0001-4739-7987)
- Shane Clifton (ORCID: https://orcid.org/0000-0003-3160-7131)
Institutions
- The University of Sydney (AU)
Publication Details
- Journal
- Health Expectations
- Published
- 2026-07-28
- DOI
- https://doi.org/10.1111/hex.70787
- Primary Topic
- Spinal Cord Injury Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00