Abstract
Background Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2-arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability. Objective To explore views and motivations towards a proposed 2-arm stem cell trial and identify factors that may impede and enhance participation. Design This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action-research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40-75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach. Discussion and Conclusion Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post-trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2-arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation.
Original language | English |
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Pages (from-to) | 367-378 |
Number of pages | 12 |
Journal | Health Expectations |
Volume | 21 |
Issue number | 1 |
Early online date | 12 Oct 2017 |
DOIs | |
Publication status | Published - Feb 2018 |
Externally published | Yes |
Keywords
- caregiver burden
- consent
- regenerative medicine
- treatment decision-making
ASJC Scopus subject areas
- Public Health, Environmental and Occupational Health