Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study

BMC Neurology, 2014 · DOI: 10.1186/1471-2377-14-48 · Published: March 13, 2014

Spinal Cord Injury Patient Experience Research Methodology & Design

Simple Explanation

This study explores what helps and what hinders individuals with traumatic spinal cord injuries (SCI) in managing their own care to prevent secondary complications. It looks at the perspectives of SCI patients, their caregivers, and healthcare managers. The research identifies key facilitators such as physical and emotional support from caregivers, peer support, a positive attitude, and maintaining independence. Barriers include caregiver burnout, funding issues, lack of accessibility, physical limitations, and negative mood. The findings suggest that self-management programs for SCI patients should consider these factors, especially the crucial role of caregivers and the individual's mental state, to improve the patient's quality of life and reduce complications.

Study Duration

September 2011 and May 2012

Participants

26 interviews: 7 individuals with traumatic SCI, 7 family/caregivers, and 12 acute care/rehabilitation managers

Evidence Level

Not specified

Key Findings

1
Physical and emotional support from caregivers significantly contribute to the well-being and self-management of individuals with traumatic SCI.
2
Peer support is a valuable facilitator, providing psychological and emotional support, practical advice, and friendship.
3
A positive outlook, maintaining independence, accessibility, and adequate funding are crucial for effective self-management, while negative mood, physical limitations, and caregiver burnout act as significant barriers.

Research Summary

This study investigates the facilitators and barriers to self-management among individuals with traumatic SCI, incorporating perspectives from patients, caregivers, and healthcare managers. The research identifies five key facilitators: physical caregiver support, emotional caregiver support, peer support, positive outlook, and maintaining independence. Conversely, five major barriers were found: caregiver burnout, funding issues, accessibility, physical limitations, and negative outlook. The study concludes that self-management programs for individuals with traumatic SCI should consider the significant contributions of caregivers, peer support, perceived control, mood, accessibility, and funding policies to improve patient outcomes and quality of life.

Practical Implications

Caregiver Support Programs

Develop and implement targeted support programs for caregivers, including skills training, psychological support, and respite care, to mitigate caregiver burnout and ensure the sustainability of care.

Peer Mentorship Initiatives

Enhance peer support programs by carefully matching mentors and mentees based on demographic and clinical characteristics, ensuring appropriate timing and relevance of support.

Accessible Healthcare Infrastructure

Advocate for and implement policies and infrastructure improvements to enhance accessibility to healthcare services and equipment, removing environmental barriers that hinder self-management.

Study Limitations

1
Selection bias in participant recruitment, potentially skewing results towards healthier and more motivated individuals.
2
Requirement of caregiver participation may limit the generalizability of findings to individuals without caregiver support.
3
Predominantly male SCI participants and female caregivers may limit the applicability to females with SCI and male caregivers.

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