“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

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.

Keywords:

• Exoskeleton device
• hope
• qualitative research
• rehabilitation
• spinal cord injuries

Ethical approval

Ethical clearance was obtained from the Health Sciences Research Ethics Committee at the University of Cape Town (384/2016).

Acknowledgements

We would like to thank the participants for giving up an extended period of their time to participate in this study. We would also like to acknowledge Philippa Skowno’s role in assisting with interviews and the psychological monitoring of participants, Josh Yeatman for assistance with data analysis and Dr. Ed Baalbergen for medical supervision.

Geolocation

Cape Town, Western Cape, South Africa.

Author contributions

RE was responsible for concept design, managing the interventions and writing the publication.

JB was responsible for concept design, conducting tests, collecting and analyzing data and writing of the publication.

CS was responsible for implementing the interventions and editing of the publication.

SW was responsible for concept design, co-supervising the study, supplying funding, and editing the publication.

WD was responsible for concept design, co-supervising the study and editing the publication.

YA was responsible as primary supervisor of the study, concept design, supplying funding and editing the publication.

LS was responsible for concept design, conducting tests, collecting and analyzing data and editing of the publication.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

We disclose receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Research Foundation of South Africa, University of Cape Town Development Grant [grant number 91421], the Oppenheimer Memorial Trust [grant number 20523] and the South African Medical Research Council (SAMRC) through its Division of Research Capacity Development under the MCSP (awarded to Jason Bantjes). The content hereof is the sole responsibility of the authors and does not necessarily represent the official views of the funding bodies. A loaner exoskeleton was provided by Ekso Bionics for the duration of the study. Ekso Bionics were not involved in the conceptualisation, design, data analysis, interpretation or dissemination of the study’s results.