“At first, I was very afraid”—a qualitative description of participants’ views and experiences in the first Human Infection Study in Malawi

Mtunthama Toto, Neema, Gooding, Kate, Kapumba, Blessings M., Jambo, Kondwani ORCID: https://orcid.org/0000-0002-3195-2210, Rylance, Jamie ORCID: https://orcid.org/0000-0002-2323-3611, Burr, Sarah, Morton, Ben ORCID: https://orcid.org/0000-0002-6164-2854, Gordon, Stephen ORCID: https://orcid.org/0000-0001-6576-1116 and Manda-Taylor, Lucinda (2021) '“At first, I was very afraid”—a qualitative description of participants’ views and experiences in the first Human Infection Study in Malawi'. Wellcome Open Research, Vol 6, p. 89.

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Abstract

Background: Human infection studies (HIS) involve deliberately infecting healthy volunteers with a pathogen in a controlled environment to understand infection and support the development of effective vaccines or treatments. HIS research is expanding to many low and middle-income settings to accelerate vaccine development. Given the implementation of the first HIS research to establish the experimental human pneumococcal carriage model’s feasibility, we sought to understand the participant’s opinions and experiences.
Methods: We used a qualitative, descriptive approach to understand participants perceptions and experiences on HIS participation. Sixteen healthy adult participants were invited to participate in in-depth exit interviews to discuss their experiences, motivations and concerns.
Results: Our findings showed that the likelihood of participation in HIS research rests on three essential conditions: motivation to participate, compensation and advocacy. The motivation and decision to participate was based on reasons including altruism, patriotism, monetary and material incentives, and while compensation was deemed appropriate, concerns about unanticipated research-related risks were raised. Participant advocate groups were recommended for increasing awareness and educating others in the broader community about HIS research.
Conclusions: Participants’ experiences of HIS in Malawi provide the basis of what can be acceptable in HIS research in lower-income countries and areas where study procedures could be adjusted.

Item Type:	Article
Subjects:	W General Medicine. Health Professions > Health Services. Patients and Patient Advocacy > W 85 Patients. Attitude and compliance WA Public Health > WA 20.5 Research (General) WA Public Health > Health Problems of Special Population Groups > WA 395 Health in developing countries
Faculty: Department:	Clinical Sciences & International Health > Clinical Sciences Department Clinical Sciences & International Health > International Public Health Department Clinical Sciences & International Health > Malawi-Liverpool-Wellcome Programme (MLW)
Digital Object Identifer (DOI):	https://doi.org/10.12688/wellcomeopenres.16587.1
Depositing User:	Stacy Murtagh
Date Deposited:	20 May 2021 13:20
Last Modified:	20 May 2021 13:21
URI:	https://archive.lstmed.ac.uk/id/eprint/17796

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