Exploring caregivers’ perceptions of community-based service requirements of patients with spinal cord injury: a qualitative study

BMC Primary Care, 2023 · DOI: https://doi.org/10.1186/s12875-023-02051-3 · Published: April 1, 2023

Spinal Cord Injury Healthcare Public Health

Simple Explanation

This study explores the viewpoints of caregivers regarding the needs of spinal cord injury (SCI) patients in community-based services. It recognizes that caregivers play a crucial role and understanding their perspectives can improve patient care. The study was conducted in Iran, involving interviews with family caregivers and home care service providers. The data collected was analyzed to identify key themes related to community reintegration and palliative care. The findings emphasize the importance of modifying social infrastructure to enable SCI patients to benefit from community-based care and lead independent lives. Continuous palliative care from injury onset to the patient's death is also highlighted.

Study Duration

Apr 2021 to Dec 2022

Participants

14 face-to-face interviews with family caregivers and providers of home care services

Evidence Level

Qualitative study

Key Findings

1
The study identified two main themes: community reintegration and palliative care. Community reintegration involves creating a suitable social platform and providing lifelong care, while palliative care includes family conferences and survival management.
2
Participants emphasized the need for social support, adaptation of urban furniture, and attention to home care requirements to facilitate community reintegration for SCI patients.
3
The study highlighted the importance of early and continuous care, psychological and physical support, and documentation of the disease course as part of lifelong care for SCI patients.

Research Summary

This qualitative study explored caregivers' perceptions of community-based service requirements for patients with spinal cord injury (SCI) in Iran. The study identified two main themes: community reintegration, emphasizing social platforms and lifelong care, and palliative care, focusing on family conferences and survival management. The findings underscore the need for modified social infrastructure, comprehensive support systems, and palliative care to improve the quality of life for SCI patients and their families.

Practical Implications

Policy and Infrastructure Development

Governments and organizations should invest in modifying social infrastructure and urban furniture to accommodate the needs of SCI patients, promoting their independence and community integration.

Comprehensive Care Programs

Healthcare systems should implement comprehensive care programs that provide early, continuous, physical, and psychological support to SCI patients, along with thorough documentation of their disease course.

Palliative Care Integration

Palliative care should be integrated into the care pathway for SCI patients from the onset of injury, focusing on family support, pain management, and respecting patient autonomy, including end-of-life decisions.

Study Limitations

1
Reluctance of formal caregivers to participate due to fear of job security.
2
Hesitation of some patients and families to be interviewed at home due to security and pension concerns.
3
The study's findings may be specific to the cultural and healthcare context of Iran, limiting generalizability to other regions.

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