Life after the hospital: Lived experience of people with traumatic spinal cord injury in a resource-constrained setting – a qualitative study

Abstract

Background: When a traumatic spinal cord injury (TSCI) happens to healthy individuals, it requires an adjustment to life situations in the community. Exploring the lived experience of spinal cord injury survivors is important because it forms a foundation for designing strategies to improve their reintegration back into the community. There are limited studies in the East and Central African region regarding the experience of community reintegration following a TSCI.
Objectives: This study explored lived experiences of persons with TSCI in Rwanda. Specifically, it sought to identify and understand the barriers and facilitators to living in the community following a TSCI.
Method: A descriptive qualitative design was employed. Nineteen individuals, purposively selected for diversity, were interviewed face to face. Interviews were audio-recorded and transcribed. Data were thematically analysed.
Results: The mean age of the informants was 40 years, ranging from 21 years to 72 years old. Ten participants had paraplegia, and nine were living with tetraplegia. The themes identified were personal factors, social relationships, community-related factors, preinjury status, and having common conditions. Strong personal resources, a supportive family, health insurance coverage, and peer counselling were reported as facilitators. Barriers include inaccessibility to public buildings and transport, inappropriate assistive devices, inappropriate language and pre-injury conditions.
Conclusion: The challenges experienced by people with TSCI range from personal to environmental factors, and from employment to policy issues. This study sheds light on the lived experience of individuals with TSCI. There is a need to review current relevant policies in Rwanda as a first step to addressing these issues.
Clinical implications: Rehabilitation services in Rwanda need to be designed to include home-based care. Introducing peer counselling could be beneficial within the rehabilitation programme.