“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

Simple item page
dc.contributor.authorEvans, Robert W.en_ZA
dc.contributor.authorBantjes, Jasonen_ZA
dc.contributor.authorShackleton, Claire L.en_ZA
dc.contributor.authorWest, Sachaen_ZA
dc.contributor.authorDerman, Wayneen_ZA
dc.contributor.authorAlbertus, Yumnaen_ZA
dc.contributor.authorSwartz, Leslieen_ZA
dc.date.accessioned2022-06-29T14:20:39Zen_ZA
dc.date.available2022-06-29T14:20:39Zen_ZA
dc.date.issued2020-09en_ZA
dc.descriptionCITATION: Evans, R. W. 2022. “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. Disability and Rehabilitation: Assistive Technology, 17(6): 712-718. doi:10.1080/17483107.2020.1815086en_ZA
dc.descriptionThe original publication is available at https://www.tandfonline.com/journals/iidt20en_ZA
dc.description.abstractPurpose: 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.en_ZA
dc.description.urihttps://www.tandfonline.com/doi/full/10.1080/17483107.2020.1815086en_ZA
dc.description.versionPublishers versionen_ZA
dc.format.extent7 pagesen_ZA
dc.identifier.citationEvans, R. W. 2022. “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. Disability and Rehabilitation: Assistive Technology, 17(6): 712-718. doi:10.1080/17483107.2020.1815086en_ZA
dc.identifier.issn1748-3115 (online)en_ZA
dc.identifier.issn1748-3107 (print)en_ZA
dc.identifier.otherdoi:10.1080/17483107.2020.1815086en_ZA
dc.identifier.urihttp://hdl.handle.net/10019.1/125433en_ZA
dc.language.isoen_ZAen_ZA
dc.publisherTaylor and Francisen_ZA
dc.rights.holderAuthors retain copyrighten_ZA
dc.subjectSelf-help devices for people with disabilitiesen_ZA
dc.subjectRobotic exoskeletonsen_ZA
dc.subjectSpinal cord -- Injuriesen_ZA
dc.subjectPatients -- Rehabilitationen_ZA
dc.subjectClinical trialsen_ZA
dc.title“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 Africaen_ZA
dc.typeArticleen_ZA
Files
Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
evans_intoxicated_2020.pdf
Size:
1.65 MB
Format:
Adobe Portable Document Format
Description:
Download article
Download
License bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
license.txt
Size:
1.71 KB
Format:
Item-specific license agreed upon to submission
Description:
Download
Collections
Research Articles (Orthopaedic Surgery)