"Nothing to lose and you might get a bit of gain": Consumer experiences of the SaeboFlex

Abstract

Background: The SaeboFlex is promoted to support repetition and intensity of hand and upper limb practice for stroke survivors. However the research evidence for effectiveness is scant with definitive trials required. Despite its limited evidence, the SaeboFlex has been integrated into clinical practice and this study investigated the SaeboFlex from the perspective of the consumer.

Aim: To explore the stroke survivor experience of using the SaeboFlex.

Methods: Stroke survivors from one outpatient setting were invited to participate in this study if they had previously, or were currently, using the SaeboFlex. An interpretive phenomenological approach guided the interview process and data analysis.

Results: Five male participants (mean age 60.6 years) were recruited to the study. Three participants were currently using the SaeboFlex and time from stroke ranged from 12 months to 10 years. Three themes emerged from the data: Hope for upper limb recovery: ‘you’ve got nothing to lose’; The everyday experience: ‘just keeping it in routine’; and Self-reported outcomes: ‘I can do more things you know… but there haven’t been any miracles’.

Discussion: The influence of the SaeboFlex on hope for continuing recovery was a substantial finding, supporting participants to continue to use the device despite not achieving desired outcomes. Changes reported by participants related predominantly to shoulder and elbow movements, with some limited changes in hand function and minimal goal-directed generalisation to occupation. The finding of hope suggests that further trials are urgently required regarding effectiveness of this device and if effective, to demonstrate how to support occupational outcomes.