4.7 Article

We are the heroes because we are ready to die for this country: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial

Journal

SOCIAL SCIENCE & MEDICINE
Volume 203, Issue -, Pages 35-42

Publisher

PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.socscimed.2018.03.008

Keywords

Sierra Leone; Ebola; Vaccine; Clinical trials; Research ethics

Funding

  1. Innovative Medicines Initiative 2 Joint Undertaking [115854]
  2. European Union's Horizon research and innovation programme
  3. European Federation of Pharmaceutical Industries and Association

Ask authors/readers for more resources

The 2014-2016 Ebola epidemic presented a challenging setting in which to carry out clinical trials. This paper reports findings from social science research carried out in Kambia, Northern Sierra Leone during first year of an Ebola vaccine trial (August 2015 July 2016). The social science team collected data through ethnographic observation, 42 in depth interviews; 4 life narratives; 200 exit interviews; 31 key informant interviews; and 8 focus group discussions with trial participants and community members not enrolled in the trial. Whilst research often focuses on why people refuse vaccination, we instead explore participant motivations for volunteering for the study, in spite of prevailing anxieties, rumours and mistrust during and after the Ebola outbreak. In so doing the paper contributes to on-going debates about research ethics and community engagement in resource poor contexts, offering reflections from an emergency and post-epidemic setting. We analyse participants' perceptions of the risks and benefits of participations, highlighting the importance of a contextual approach. We focus on four types of motivation: altruism; curiosity and hope; health-seeking; and notions of exchange, and argue for the role of social science in developing grounded research ethics and community engagement strategies that can take into account context and local realities.

Authors

I am an author on this paper
Click your name to claim this paper and add it to your profile.

Reviews

Primary Rating

4.7
Not enough ratings

Secondary Ratings

Novelty
-
Significance
-
Scientific rigor
-
Rate this paper

Recommended

Article Immunology

Strategic silences, eroded trust: The impact of divergent COVID-19 vaccine sentiments on healthcare workers' relations with peers and patients

Leonardo W. Heyerdahl, Stef Dielen, Helene Dodion, Carla Van Riet, ToTran Nguyen, Clarissa Simas, Lise Boey, Tarun Kattumana, Nico Vandaele, Heidi J. Larson, Koen Peeters Grietens, Tamara Giles-Vernick, Charlotte Gryseels

Summary: Polarized debates about Covid-19 vaccination and vaccine mandates among healthcare workers in Belgium have led to difficulties in discussing vaccination with colleagues and patients. Unvaccinated healthcare workers fear expressing their vaccine sentiments and avoid discussing vaccines out of concern for upsetting others or facing disciplinary action. Surprisingly, some vaccine-confident healthcare workers also hide their vaccine sentiments to avoid conflicts. Loss of trust and strained social relationships between healthcare workers and individuals with different vaccine sentiments are common.

VACCINE (2023)

Article Infectious Diseases

Influenza vaccine uptake among children and older adults in China: a secondary analysis of a quasi-experimental study

Yumeng Du, Chenqi Jin, Mark Jit, Tracey Chantler, Leesa Lin, Heidi J. Larson, Jing Li, Wenfeng Gong, Fan Yang, Nina Ren, Weibin Cheng, Yi Zhou, Weiming Tang, Joseph D. Tucker, Dan Wu

Summary: This study aimed to understand the factors associated with influenza vaccine uptake among children and older people in China. The results showed that the vaccination rate was higher in the subsidized group compared to the self-paid group. In the self-paid group, prior vaccination experiences and trust in providers' advice were associated with higher vaccine uptake, while in the subsidized group, marital status, perception of vaccine effectiveness, and previous experience of influenza-like illnesses in the family were associated with vaccine uptake.

BMC INFECTIOUS DISEASES (2023)

Editorial Material Medicine, General & Internal

No time for complacency on COVID-19 in Europe

Antoine Flahault, Alexandra Calmy, Dominique Costagliola, Oxana Drapkina, Isabella Eckerle, Heidi J. Larson, Helena Legido-Quigley, Catherine Noakes, Michel Kazatchkine, Hans Kluge

LANCET (2023)

Article Immunology

HPV vaccination acceptance and perceptions related to fertility and population control in the Gambia: An anthropological analysis

Rose J. Wilson, Lamin Leigh, Haddy Bah, Heidi J. Larson, Ed Clarke

Summary: This study is the first to investigate HPV vaccination in The Gambia using in-depth interviews and focus group discussions. The study found that despite high uptake rates, knowledge of HPV vaccination was low and there were concerns about infertility and population control. The study suggests that addressing these concerns in a holistic manner considering socio-political contexts could lead to more positive perceptions and increased vaccine uptake rates.

VACCINE (2023)

Article Biotechnology & Applied Microbiology

Declining trends in vaccine confidence across sub-Saharan Africa: A large-scale cross-sectional modeling study

A. de Figueiredo, E. Temfack, R. Tajudeen, H. J. Larson

Summary: The routine childhood immunization coverage in Africa has experienced the largest decline in three decades, and the impact of the COVID-19 pandemic on vaccines is not well understood. Through individual interviews conducted in eight sub-Saharan countries between 2020 and 2022, we found declines in perceptions toward the importance of vaccines for children, while perceptions toward vaccine safety and effectiveness varied. Additionally, COVID-19 vaccines were perceived to be less important and safe in 2022 than in 2020 in six out of the eight countries.

HUMAN VACCINES & IMMUNOTHERAPEUTICS (2023)

Article Health Care Sciences & Services

Effectiveness of chatbots on COVID vaccine confidence and acceptance in Thailand, Hong Kong, and Singapore

Kristi Yoonsup Lee, Saudamini Vishwanath Dabak, Vivian Hanxiao Kong, Minah Park, Shirley L. L. Kwok, Madison Silzle, Chayapat Rachatan, Alex Cook, Aly Passanante, Ed Pertwee, Zhengdong Wu, Javier A. Elkin, Heidi J. Larson, Eric H. Y. Lau, Kathy Leung, Joseph T. Wu, Leesa Lin

Summary: Chatbots have become popular in health services and communications, but few studies have evaluated their effectiveness in improving vaccine confidence and acceptance. A randomized controlled trial was conducted in Thailand, Hong Kong, and Singapore, comparing the effects of COVID-19 vaccine chatbots on confidence and acceptance among unvaccinated individuals. The results showed mixed success, with decreased confidence in vaccine effectiveness in Thailand, decreased vaccine acceptance in Hong Kong, and decreased vaccine confidence in safety in Singapore. Process evaluation indicated support for vaccine chatbots, but further studies are needed to link chatbot usage and real-world vaccine uptake.

NPJ DIGITAL MEDICINE (2023)

Article Public, Environmental & Occupational Health

Figuring stuff out myself - a qualitative study on maternal vaccination in socially and ethnically diverse areas in England

Sima Berendes, Sandra Mounier-Jack, Oyinkansola Ojo-Aromokudu, Alice Ivory, Joseph D. Tucker, Heidi J. Larson, Caroline Free

Summary: This study aimed to understand the complex interplay between structural and behavioral factors contributing to the low maternal vaccine uptake in socially and ethnically diverse areas in London. The results showed that various factors from both health service providers and pregnant women influenced the decision-making process for vaccination, including individual, social, and contextual factors. To improve the uptake, it is necessary to enhance the reliability of information and vaccination provision, provide training and communication, and consider individual skills and information needs.

BMC PUBLIC HEALTH (2023)

Review Health Care Sciences & Services

Conversational AI and Vaccine Communication: Systematic Review of the Evidence

Aly Passanante, Ed Pertwee, Leesa Lin, Kristi Yoonsup Lee, Joseph T. Wu, Heidi J. Larson

Summary: The use of conversational artificial intelligence (AI) in vaccine communication has the potential to provide credible and personalized information to users, leading to positive effects on vaccine attitudes. However, more research is needed to understand the long-term and societal impacts of this technology, as well as address ethical concerns.

JOURNAL OF MEDICAL INTERNET RESEARCH (2023)

Article Biotechnology & Applied Microbiology

Influenza vaccination landscape in Italy: A comprehensive study through the OBVIOUS project lens

Angelo Capodici, Marco Montalti, Giorgia Solda, Aurelia Salussolia, Giusy La Fauci, Zeno Di Valerio, Francesca Scognamiglio, Maria Pia Fantini, Anna Odone, Claudio Costantino, Heidi J. Larson, Julie Leask, Jacopo Lenzi, Davide Gori, OBVIOUS Board

Summary: In Italy, influenza claims about 8,000 lives annually. Despite free vaccinations for high-risk groups, there is hesitancy among the population. This study found that central Italy had the highest resistance, with significant percentages of seniors, teachers, law enforcement, and healthcare workers expressing noncompliance. Factors contributing to vaccine refusal included lack of awareness of being in a target group, female gender, being aged 45-54, rural residency, absence of higher education, perceived vaccine unsafety, and having vaccine-opposed acquaintances. Addressing these perceptions and enhancing awareness can potentially increase vaccination rates and lessen the impact of the disease.

HUMAN VACCINES & IMMUNOTHERAPEUTICS (2023)

Editorial Material Biotechnology & Applied Microbiology

Recent trends in vaccine coverage and confidence: A cause for concern

Rachel L. Eagan, Heidi J. Larson, Alexandre de Figueiredo

Summary: Declining trends in vaccine confidence, particularly among young adults, are a cause for concern as they coincide with low routine immunization coverage. This article discusses recent research on global vaccine confidence levels and trends, the factors influencing confidence, and the impact of the COVID-19 pandemic on vaccine confidence. Timely examination of the causes and consequences of waning vaccine confidence, as well as critical evaluation of COVID-19 response measures, is crucial in preventing further losses in vaccine confidence and building resilience for future health crises.

HUMAN VACCINES & IMMUNOTHERAPEUTICS (2023)

Editorial Material Medicine, General & Internal

Factors Associated With Vaccination Refusal-Critical Lessons From the Omicron Wave in Hong Kong

Leonard Hofstra, Heidi J. Larson

JAMA NETWORK OPEN (2023)

Article Public, Environmental & Occupational Health

More than one crisis: COVID-19 response actors navigating multi-dimensional crises in Flanders, Belgium

Tarun Kattumana, Leonardo W. W. Heyerdahl, ToTran Nguyen, Stef Dielen, Koen Peeters Grietens, Anne-Mieke Vandamme, Tamara Giles-Vernick, Heidi J. J. Larson, Nico Vandaele, Corinne Vandermeulen, Charlotte Gryseels, Carla Van Riet

Summary: This research investigates the experiences of COVID-19 response actors during the initial phase of vaccine rollout in Flanders, Belgium. The study reveals that participants faced multi-dimensional crises related to prioritization, communication, the image of science, epistemic agency and autonomy, and trust in responding to the pandemic and vaccine hesitancy.

CRITICAL PUBLIC HEALTH (2023)

Article Public, Environmental & Occupational Health

Social media for public health: Reaping the benefits, the harms

Zain Jafar, Jonathan D. Quick, Heidi J. Larson, Verner Venegas-Vera, Philip Napoli, Godfrey Musuka, Tafadzwa Dzinamarira, Kolar Sridara Meena, T. Raju Kanmani, Eszter Rimanyi

Summary: With over 4.26 billion social media users worldwide, social media has become a major platform for health information, exchange, and influence. While it offers benefits such as promoting preventive behaviors and connecting individuals to reliable information, it also poses risks like exacerbating a decline in public trust and spreading dangerous misinformation. Therefore, concerted efforts from various stakeholders are necessary to ensure healthy and responsible use of social media.

HEALTH PROMOTION PERSPECTIVES (2023)

Book Review Humanities, Multidisciplinary

Anti/Vax: Reframing the Vaccine Controversy

Heidi J. Larson

JOURNAL OF MEDICAL HUMANITIES (2023)

Correction Humanities, Multidisciplinary

Anti/Vax: Reframing the Vaccination Controversy (Jul, 10.1007/s10912-023-09815-z, 2023)

Heidi J. Larson

JOURNAL OF MEDICAL HUMANITIES (2023)

Article Public, Environmental & Occupational Health

Using curiosity to counter health information avoidance

Samantha Horn, Yana Litovsky, George Loewenstein

Summary: This study suggests that curiosity can be a useful tool in increasing demand for and engagement with aversive health information. By manipulating curiosity through various methods, researchers found that participants were more likely to view and engage with information about their drinking habits, cancer risk, and the sugar content in drinks. Overall, curiosity prompts provide a simple and effective way to increase engagement with aversive health information.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

We're implementing AI now, so why not ask us what to do? - How AI providers perceive and navigate the spread of diagnostic AI in complex healthcare systems

Sandra Gillner

Summary: Despite high expectations, the extensive and rapid adoption of AI in medical diagnostics has not been realized. This study investigates the perception and navigation of AI providers in complex healthcare systems, revealing their self-organization to increase adaptability and the practices utilized to mitigate tensions within the healthcare subsystems.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Exploring the impact of social protest on mental health: A study of the 2019 Social Uprising in Chile

Fabian Duartea, Alvaro Jimenez-Molina

Summary: This study found that violence related to social protest has a significant impact on depressive symptoms, leading to an increase in depression among the population in Chile. The effect varies by gender and age, with a stronger influence on men and young adults.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

The impacts of rent burden and eviction on mortality in the United States, 2000-2019

Nick Graetz, Carl Gershenson, Sonya R. Porter, Danielle H. Sandler, Emily Lemmerman, Matthew Desmond

Summary: Investments in stable, affordable housing may be an important tool for improving population health. This study, using administrative data, found that high rent burden, increases in rent burden during midlife, and evictions were associated with increased mortality.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Beyond the patient-doctor dyad: Examining other patient engagement in Traditional Chinese Medicine consultations

Wan Wei

Summary: This study explores the phenomenon of other patient participation in Traditional Chinese Medicine (TCM), uncovering the various roles that third parties can assume during medical interactions. The findings contribute to existing research on patient resistance and triadic medical interactions, providing insights into the dynamics and implications of third-party involvement in medical consultations.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Mobilizing pilot-based evidence for the spread and sustainability of innovations in healthcare: The role of innovation intermediaries

Harry Scarbrough, Katie Rose M. Sanfilippo, Alexandra Ziemann, Charitini Stavropoulou

Summary: This paper examines the contribution of pilot implementation studies to the wider spread and sustainability of innovation in healthcare systems. Through an empirical examination of an innovation intermediary organization in the English NHS, the study finds that their work in mobilizing pilot-based evidence involves configuring to context, transitioning evidence, and managing the transition. The findings contribute to theory by showing how intermediary roles can support the effective transitioning of pilot-based evidence, leading to more widespread adoption and sustainability of innovation.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Perinatal health in Spain during and after the Great Recession: Educational selection into fertility as a protective factor in high unemployment contexts

Marta Seiz, Leire Salazar, Tatiana Eremenko

Summary: This study examines the impact of maternal educational selection on birth outcomes during an economic recession, and finds that more educated mothers are more likely to give birth during high unemployment periods. Additionally, maternal education mitigates the adverse effects of unemployment on birth outcomes and is consistently associated with better perinatal health.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Cultural tightness-looseness and normative social influence in eight Asian countries: Associations of individual and collective norms with vaccination intentions

Jingyuan Shi, Hye Kyung Kim, Charles T. Salmon, Edson C. Tandoc Jr, Zhang Hao Goh

Summary: This study examines the influence of individual and collective norms on COVID-19 vaccination intention across eight Asian countries. The findings reveal nuanced patterns of how individual and collective social norms influence health behavioral decisions, depending on the degree of cultural tightness-looseness.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Social connectedness, functional capacity, and longevity: A focus on positive relations with others

Elliot Friedman, Melissa Franks, Elizabeth Teas, Patricia A. Thomas

Summary: This study found that positive relations with others have a significant impact on functional limitations and longevity in aging adults, independent of social integration and social support.

SOCIAL SCIENCE & MEDICINE (2024)

Article Public, Environmental & Occupational Health

Age-friendly neighbourhood environment, functional abilities and life satisfaction: A longitudinal analysis of older adults in urban China

Zhuolin Pan, Yuqi Liu, Ye Liu, Ziwen Huo, Wenchao Han

Summary: This study examines the effects of age-friendly neighbourhood environment and functional abilities on life satisfaction among older adults in urban China. The findings highlight the importance of transportation, housing, and social and physical environment factors in influencing functional abilities and life satisfaction. The study provides valuable insights for policymakers in enhancing older adults' life satisfaction in the Chinese urban context.

SOCIAL SCIENCE & MEDICINE (2024)