Clinical trials in low-resource settings : the perspectives of caregivers of paediatric participants from Uganda, Tanzania and Kenya
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
 
ID 4511623
Author(s) van den Berg, Machteld; Ogutu, Bernhards; Sewankambo, Nelson K.; Merten, Sonja; Biller-Andorno, Nikola; Tanner, Marcel
Author(s) at UniBasel Wyss-van den Berg, Machteld
Merten, Sonja
Tanner, Marcel
Year 2019
Title Clinical trials in low-resource settings : the perspectives of caregivers of paediatric participants from Uganda, Tanzania and Kenya
Journal Tropical medicine and international health
Volume 24
Number 8
Pages / Article-Number 1023-1030
Keywords caregivers; clinical trials; complexity theory; développement de vaccins; essais cliniques; low-resource settings; qualitative research; recherche qualitative; régions à faibles ressources; soignants; théorie de la complexité; vaccine development
Abstract Vaccine clinical trials in low-resource settings have unique challenges due to structural and financial inequities. Specifically, protecting participant and caregiver autonomy to participate in the research study can be a major challenge, so understanding the setting and contextual factors which influence the decision process is necessary. This study investigates the experience of caregivers consenting on behalf of paediatric participants in a malaria vaccine clinical trial where participation enables access to free, high-quality medical care.; We interviewed a total of 78 caregivers of paediatric participants previously enrolled in a phase II or III malaria vaccine clinical trial in Uganda, Tanzania and Kenya. Interviews were qualitative and analysed using a thematic framework analysis focusing on the embodied caregiver in the political, economic and social reality.; Caregivers of participants in this study made the decision to enrol their child based on economic, social and political factors that extended beyond the trial into the community and the home. The provision of health care was the dominant reason for participation. Respondents reported how social networks, rumours, hierarchal structures, financial constraints and family dynamics affected their experience with research.; The provision of medical care was a powerful motivator for participation. Caregiver choice was limited by structural constraints and scarce financial resources. The decision to participate in research extended beyond individual consent and was embedded in community and domestic hierarchies. Future research should assess other contexts to determine how the choice to participate in research is affected when free medical care is offered.
Publisher Blackwell Science
ISSN/ISBN 1360-2276
edoc-URL https://edoc.unibas.ch/71697/
Full Text on edoc No
Digital Object Identifier DOI 10.1111/tmi.13281
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/31215122
ISI-Number WOS:000473987800001
Document type (ISI) Journal Article
 
   

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