The experiences of individuals with cervical spinal cord injury and their family during post-injury care in non-specialised and specialised units in UK

BMC Health Services Research, 2020 · DOI: https://doi.org/10.1186/s12913-020-05659-8 · Published: September 9, 2020

Spinal Cord Injury Healthcare Rehabilitation

Simple Explanation

This study explores the experiences of individuals with cervical spinal cord injury (CSCI) and their families during post-injury care in both specialized and non-specialized units in the UK. The goal was to understand the impact of care settings on their recovery journey. The research involved interviewing individuals with CSCI and their family members about their experiences across different care units. The interviews covered various aspects of their journey, including challenges with the system and their personal recovery process. The study found that while participants felt well-cared for in non-specialized units, they believed they didn't receive the necessary specialist care, which delayed their rehabilitation. The study suggests that staff in non-specialized units need more training to support patients with swallowing and communication difficulties.

Study Duration

March to October 2015

Participants

8 individuals with cervical spinal cord injury and their family members

Evidence Level

Not specified

Key Findings

1
Participants reported significant adjustments to their injury and physical limitations, requiring support from family and external organizations.
2
Transitions between different care settings (trauma centers, non-specialized units, and specialized spinal units) were challenging, with participants feeling unprepared and lacking information.
3
Participants recognized the value of specialist spinal rehabilitation for improved function but expressed concerns that delayed access might have reduced their chances of improvement and recovery.

Research Summary

The study highlights the challenging experiences of individuals with CSCI and their families during post-injury care in the UK, particularly in non-specialized units where specialist care is often lacking. Delays in transfer to specialized spinal units (SIUs) led to prolonged stays in non-specialized settings, impacting clinical outcomes and necessitating adaptation to new clinical environments and staff relationships. Participants experienced difficulties with swallowing and communication, and they emphasized the importance of specialized training and support for staff in non-specialized units to address these challenges effectively.

Practical Implications

Staff Training

Provide specialized training to staff in non-specialized units to improve the management of dysphagia and communication difficulties in CSCI patients.

Care Transitions

Improve communication and preparation for patients and families during transitions between different care settings.

Early Access to Specialist Units

Address the limited capacity in specialized spinal units to ensure timely access to specialist rehabilitation for CSCI patients.

Study Limitations

1
Small sample size and recruitment limited to the south of England may limit the generalizability of the findings.
2
Recall bias may be present in participants interviewed more than 20 months after their injury.
3
The use of proxy individuals for recruitment may have introduced selection bias.

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