Hope and despair: a qualitative exploration of the experiences and impact of trial processes in a rehabilitation trial

Norris, Meriel; Poltawski, Leon; Calitri, Raff; Shepherd, Anthony I.; Dean, Sarah

doi:10.1186/s13063-019-3633-8

Cited by 13 publications

(16 citation statements)

References 31 publications

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“…The expressed hope and expectations of personal bene t for recovery are consistent with the main reasons for participation stated by patients in our trial. Assumptions of therapeutic bene t from participation in (stroke rehabilitation) research has also been found and discussed in other studies (23,24).…”

Section: Bene Ts and Concerns Related To Rtms Treatmentmentioning

confidence: 84%

“…Some patients shared concerns about allocation to the control group, which could limit their chance of additional improvement. Several studies have explored the psychological burden for patients participating in an RCT, who were informed by the result of randomization, and acknowledged the discomfort of being randomized, and anxiousness or embarrassment to receive placebo (23,43). However, in our study the patients were unaware of group allocation.…”

Section: Bene Ts and Concerns Related To Rtms Treatmentmentioning

confidence: 99%

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Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

Lieshout

Jacobs

Pelsma³

et al. 2020

Preprint

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Background: Transcranial magnetic stimulation (TMS) treatments have shown promise in improving arm recovery in stroke patients. Currently, little is known about patients’ experiences with TMS treatment, and this lack of knowledge may affect optimal implementation in clinical practice. The aim of this explorative study was to gain insight in the perceived effects and experiences of the design and delivery of a TMS treatment for upper limb recovery from the perspectives of stroke patients. Methods: This qualitative study was conducted as part of a randomized controlled trial (RCT) in a specialized rehabilitation center. Data were collected through face-to-face semi-structured interviews with 13 stroke patients who completed a 10-day TMS intervention for upper limb recovery. The interviews were recorded, transcribed verbatim and analyzed using thematic analysis. Results: The major themes that emerged from the patients’ feedback were the following: positive experiences of the treatment (experienced physical effects, comfort, therapeutic relationship, receiving information, learning about the brain, no burden of added rTMS treatment session, no unpleasant aspects), concerns (effects of stimulation of the brain, equipment, logistics), general experience of recovery, experienced psychological effects (grateful, sense of purpose, recovery as extra motivation to exercise, disappointment and hope of group allocation), and motivation to participate (personal benefit and cognitions, altruism). Important components related to the positive experience of the design and delivery of the treatment included comfort (i.e. moment of relaxation) and the sensation of a painless treatment without side-effects. Key concerns included uncertainty and anxiety about possible negative consequences and group allocation. Conclusions: This study demonstrates that TMS is well accepted by stroke patients with an upper limb paresis. Besides the expectation of a therapeutic benefit, the patients reported various psychological effects. Positive experiences, such as the provision of a short moment of relaxation each day, could have practical implications for clinical stroke rehabilitation settings aimed at improving patient satisfaction. Explanation about and feedback from routine motor recovery progression monitoring at fixed times post-stroke is also valued by patients. Negative emotions may be limited or avoided by transparent and recurrent information delivery in future trials. Trial registration: NL5952 Registered November 28, 2016.

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Section: Bene Ts and Concerns Related To Rtms Treatmentmentioning

confidence: 84%

Section: Bene Ts and Concerns Related To Rtms Treatmentmentioning

confidence: 99%

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

Lieshout

Jacobs

Pelsma³

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

Section: Bene Ts and Concerns Related To Rtms Treatmentmentioning

confidence: 84%

Section: Bene Ts and Concerns Related To Participation In An Rctmentioning

confidence: 99%

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

Lieshout

Jacobs

Pelsma³

et al. 2020

Preprint

View full text Add to dashboard Cite

Background: Transcranial magnetic stimulation (TMS) treatments have shown promise in improving arm recovery in stroke patients. Currently, little is known about patients’ experiences with TMS treatment, and this lack of knowledge may affect optimal implementation in clinical practice. The aim of this explorative study was to gain insight in the perceived effects and experiences of the design and delivery of a TMS treatment for upper limb recovery from the perspectives of stroke patients. Methods: This qualitative study was conducted as part of a randomized controlled trial (RCT) in a specialized rehabilitation center. Data were collected through face-to-face semi-structured interviews with 13 stroke patients who completed a 10-day TMS intervention for upper limb recovery. The interviews were recorded, transcribed verbatim and analyzed using thematic analysis. Results: The major themes that emerged from the patients’ feedback were the following: physical and psychological experienced effects (receiving something, sense of purpose, and recovery as a motivator), positive experiences (comfort, power of communication and information, interest and curiosity, no burden, no unpleasant aspects), concerns (uncertainty, equipment, logistics), and likeliness to participate in an RCT (personal drive and beliefs, and altruism). Important components related to the positive experience of the design and delivery of the treatment included comfort (i.e. moment of relaxation) and the sensation of a painless treatment without side-effects. Key concerns included uncertainty and anxiety about possible negative consequences and group allocation. Conclusions: This study demonstrates that TMS is well accepted by stroke patients with an upper limb paresis. Besides the expectation of a therapeutic benefit, the patients reported various psychological effects. Positive experiences, such as the provision of a short moment of relaxation each day, could have practical implications for clinical stroke rehabilitation settings aimed at improving patient satisfaction. Explanation about and feedback from routine motor recovery progression monitoring at fixed times post-stroke is also valued by patients. Negative emotions may be limited or avoided by clear, transparent and recurrent information delivery in future trials. Trial registration: NL5952 Registered November 28, 2016.

show abstract

“…Some patients shared concerns about allocation to the control group, which could limit their chance of additional improvement. Several studies have explored the psychological burden for patients participating in an RCT, who were informed by the result of randomization, and acknowledged the discomfort of being randomized, and anxiousness or embarrassment to receive placebo [27,47]. However, in our study the patients were unaware of group allocation.…”

Section: Benefits and Concerns Related To Participation In An Rctmentioning

confidence: 99%

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

et al. 2020

View full text Add to dashboard Cite

Background Transcranial magnetic stimulation (TMS) treatments have shown promise in improving arm recovery in stroke patients. Currently, little is known about patients’ experiences with repetitive TMS treatment, and this lack of knowledge may affect optimal implementation in clinical practice. The aim of this explorative study was to gain insight in the perceived effects and experiences of the design and delivery of a rTMS treatment for upper limb recovery from the perspectives of stroke patients. Methods This qualitative study was conducted as part of a randomized controlled trial (RCT) in a specialized rehabilitation center. Data were collected through face-to-face semi-structured interviews with 13 stroke patients who completed a 10-day rTMS intervention for upper limb recovery. The interviews were recorded, transcribed verbatim and analyzed using thematic analysis. Results The major themes that emerged from the patients’ feedback were the following: positive experiences of the treatment (experienced physical effects, comfort, therapeutic relationship, receiving information, learning about the brain, no burden of added rTMS treatment session, no unpleasant aspects), concerns (effects of stimulation of the brain, equipment, logistics), general experience of recovery, experienced psychological effects (grateful, sense of purpose, recovery as extra motivation to exercise, disappointment and hope of group allocation), and motivation to participate (personal benefit and cognitions, altruism). Important components related to the positive experience of the design and delivery of the treatment included comfort (i.e. moment of relaxation) and the sensation of a painless treatment without side-effects. Key concerns included uncertainty and anxiety about possible negative consequences and group allocation. Conclusions This study demonstrates that rTMS is well accepted by stroke patients with an upper limb paresis. Besides the expectation of a therapeutic benefit, the patients reported various psychological effects. Positive experiences, such as the provision of a short moment of relaxation each day, could have practical implications for clinical stroke rehabilitation settings aimed at improving patient satisfaction. Explanation about and feedback from routine motor recovery progression monitoring at fixed times post-stroke is also valued by patients. Negative emotions may be limited or avoided by transparent and recurrent information delivery in future trials.

show abstract

Hope and despair: a qualitative exploration of the experiences and impact of trial processes in a rehabilitation trial

Cited by 13 publications

References 31 publications

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study

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