‘The moment I leave my home – there will be massive challenges’: experiences of living with a spinal cord injury in Botswana

Abstract

Background: When suffering a spinal cord injury (SCI), the patient and family face numerous challenges regardless of socio-economic level. The stigmatisation of persons with disabilities has been reported, however, reports from Southern Africa are largely lacking. Purpose: To explore the experiences of living with a traumatic SCI in Botswana concerning perceived attitudes, obstacles and challenges. Method: A qualitative approach with semi-structured interviews was conducted. Thirteen community-dwelling persons who have lived with an SCI for at least two years participated. Results: A theoretical model was formed that illustrate the associations between the core category, Self, and the categories Relationships and Society. The model illustrates that personal resources, including a strong identity and a positive attitude, are crucial to the experience of inclusion in the community. A supportive family, a source of income, and faith were strong facilitators, while inaccessibility and devaluing attitudes were barriers. Having a disability led to increased risk of poverty and social exclusion. Conclusion: This study emphasised the importance of personal resources, family support, and improved accessibility to facilitate inclusion in the society. Informants requested legislation to advocate for the rights of persons with disabilities to be respected, with the aim of moving towards an equal accessible society.

Implications for Rehabilitation

• Reclaiming or restructuring one’s identity after a SCI is crucial for the person’s ability to move on and develop beneficial coping strategies. Support from family and friends, staff and peer support are crucial parts in that process.

• Spirituality, values, needs and coping strategies vary profoundly among persons sustaining disabling injuries. In striving to optimise care, rehabilitation staff needs to be attentive to the personal resources and preferences to be able to individualise care, encounter, and facilitate transition back to the community.

• Family members play a crucial part in rehabilitation. It is essential for the patients’ well-being and care that they get explicit descriptions of the patient’s abilities.

• Living in a well-adapted home will facilitate well-being, independence, and return to work. Rehabilitation staff needs to focus their efforts on making this successful prior to discharge from hospital.

Keywords:

• Attitudes
• Botswana
• experiences
• faith
• low-and middle-income countries
• patient perspective
• spinal cord injury

Acknowledgements

Thanks to all the participants contributing to this study and to Dirk Casto and Conran Joseph for assisting with editing the manuscript.

Declaration of interest

The authors report no declarations of interest. We also like to thank for financial support from the Neuro Sweden (Neuroförbundet), Swedish International Developmental Cooperation Agency (Sida) and the Spinalis Foundation.