Australian arm of the International Spinal Cord Injury (Aus-InSCI) Community Survey: 2. Understanding the lived experience in people with spinal cord injury

Spinal Cord, 2022 · DOI: https://doi.org/10.1038/s41393-022-00817-7 · Published: June 15, 2022

Spinal Cord Injury Participation Public Health

Simple Explanation

This study examines the experiences of Australians living with spinal cord injury (SCI). It looks at common problems they face, their health, well-being, and overall quality of life. The research considers how factors like age, gender, injury specifics, and mobility levels impact their lives. It aims to pinpoint key issues and suggest improvements for clinical care, health system management, and policies. Ultimately, the goal is to empower people with SCI, giving them more choices and control over their futures.

Study Duration

Mar’18 and Jan’19

Participants

1579 participants, 18 years or over with SCI and at least 12 months post-injury

Evidence Level

Cross-sectional survey

Key Findings

1
Participants with tetraplegia and complete injuries experienced more health and activity/participation problems and faced greater environmental barriers.
2
Major challenges included intimate relationships and accessing public transportation, with less than half of the working-age population being employed.
3
Common secondary health conditions were pain, sexual dysfunction, muscle spasms, sleep problems and bowel problems.

Research Summary

The Aus-InSCI study provides a comprehensive overview of the lived experience of people with SCI in Australia, identifying priority needs, gaps in services, and barriers to a fulfilling life. Environmental barriers, such as difficulty accessing public places and inadequate transportation, significantly impact participants' lives. The study highlights the need for psychosocial support, accessible transportation, assistive technologies, and specialized equipment to promote community integration and independence for individuals with SCI.

Practical Implications

Policy Changes

The study findings can inform changes in policy, improvements in service delivery systems, and funding allocations to better support people with SCI.

Integrated Care

There is a need for better integration across the continuum of care, with improved care transitions from hospital into the community, and increased access to equipment, care, and support services.

Targeted Interventions

Targeted management of pain, sexual dysfunction, spasms, sleep disorder, bowel problems, and fatigue is crucial for improving health-related outcomes for people with SCI.

Study Limitations

1
The study is a cross-sectional survey, limiting the ability to establish causality.
2
The study relies on self-reported data, which may be subject to recall bias.
3
The study sample may not be fully representative of all people with SCI in Australia.

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