Division of Exercise Science and Sports Medicine, Department of Human Biology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Department of Psychology, Faculty of Arts and Social Sciences, Stellenbosch University, South Africa.
Disabil Rehabil Assist Technol. 2022 Aug;17(6):712-718. doi: 10.1080/17483107.2020.1815086. Epub 2020 Sep 4.
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.
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.
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.
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. PACTR201608001647143IMPLICATIONS FOR REHABILITATIONIn 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.
本研究讨论了在南非开普敦进行的一项新型脊髓损伤 (SCI) 康复干预随机对照试验中参与者的报告。
16 名参与者被随机分配到接受机器人运动训练的康复组、一种新型技术组，或接受基于活动的干预组。所有参与者在干预前和 6 个月随访时接受了访谈。
在 SCI 康复服务几乎不存在的情况下，所有参与者都对研究充满热情，并对参与研究表示感谢。他们对该项目能取得的成果寄予厚望，许多人错误地认为该项目将帮助他们再次独立行走。虽然希望和热情对坚持实验性干预研究很有用，但在资源匮乏的环境中，参与者有可能在虚假希望破灭后感到非常失望，这引发了对有兴趣利用新技术在资源匮乏环境中促进健康的研究人员的重要伦理问题。
对于临床医生来说，在支持积极情绪（这可能导致积极结果）和面对不切实际的希望（这可能导致消极结果）之间可能会有困难。在参与者重新融入社区后进行随访，以确定长期的心理影响，这一点很重要。
在康复服务获取机会低的资源匮乏环境中，在新干预措施试验的背景下，脊髓损伤人群可能会产生希望。当使用新技术时，这种希望可能会增加，就像本研究中一样。
希望对进入康复的人非常有帮助，但不切实际的希望和期望可能会在长期产生负面影响。在本研究中，参与者的期望集中在不切实际地恢复行走能力上，尽管过去的经历和医疗建议表明情况并非如此。
支持高期望和面对不切实际的希望之间存在一条微妙的界限。对于临床医生来说，这是一个难题，因为对干预措施的不适当希望和不必要的悲观都有可能造成伤害。
在任何创新试验结束后对参与者进行随访很重要，不仅要监测身体进展，还要在必要时在他们发现自己的期望没有得到充分满足时，为他们提供支持，帮助他们度过失望期。
