"I was like intoxicated with this positivity": the politics of hope amongst participants in a trial of a novel spinal cord injury rehabilitation technology in South Africa. (18th August 2022) - Evans, Robert W.
Abstract: Purpose: This study discussed the reports by participants in a randomised controlled trial of a novel intervention for spinal cord injury (SCI) rehabilitation in Cape Town, South Africa. Materials and methods: Sixteen participants were randomised to rehabilitation involving the use of robotic locomotor training, a novel technology, or to a group receiving an activity-based intervention. All participants were interviewed before the intervention and at six months follow-up. Results: In a context in which rehabilitation services for SCI are virtually non-existent, all participants approached the study with enthusiasm and expressed gratitude for participation. They had high hopes for what the programme could achieve, with many believing, perhaps incorrectly, that the programme would help them walk independently again. While hope and enthusiasm are useful for adherence to experimental intervention studies, there is a danger, especially in poorly resourced contexts, for participants to experience considerable disappointment following false hope not being realised. This raises important ethical issues for researchers interested in the potential of new technologies to promote health in poorly resourced contexts. Conclusions: For clinicians, the path between supporting positive emotions (which may lead to positive outcomes), and confronting unrealistic hope (which may lead to negative outcomes) may be difficult. Follow-up with participants after re-integration into their communities is important to determine long-term psychological impact. Pan African Clinical Trial Number: PACTR201608001647143 IMPLICATIONS FOR REHABILITATION: In low-resource contexts where there is a low level of access to rehabilitation services, such access in the context of a trial of a new intervention may engender hope in a group of people with spinal cord injury. This hope may increase when a new technology is used, as was the case in this study. Hope can be very helpful to people entering rehabilitation, but unrealistic hope and expectations may have negative implications in the longer term. In this study, expectations of participants centred, unrealistically, around regaining the ability to walk again, despite past experiences and medical advice suggesting otherwise. A thin line exists between supporting high expectations and confronting unrealistic hope. This conundrum is difficult for the clinician, as both inappropriate hope and undue pessimism about an intervention have the potential to cause harm. Participant follow-up after the end of any innovative trial is important, not just to monitor physical progress, but also, where necessary, to support participants through a potential period of disillusionment when they find their expectations have not been fully met.