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Background: Adoption of prevention and therapeutic innovations to ensure that National Malaria Control Programmes meet their incidence reduction targets is highly dependent on the conduct of rigorous clinical trials. In Liberia, malaria control virtually halted during the recent Ebola epidemic, and could enormously benefit from innovations to protect its most vulnerable populations, including pregnant women, against malaria. Health policy-planners could feel more inclined to adopt novel interventions with demonstrated safety and efficacy when trialled among their women population. However, pregnant women are especially vulnerable when targeted as research participants. Whilst some studies in the region attempted to understand the ethical issues around the conduct of clinical research, there is need of such information from Liberia to inform future malaria research. Methods: This is a grounded theory study that aims to understand the barriers and opportunities for pregnant women to consent to participate in malaria research in Liberia. The study was conducted between November 2016 and May 2017 at the St Joseph’s Catholic Hospital, Monrovia. In-depth interviews and focus group discussions were held with hospital staff, traditional community representatives, and pregnant women. Results: According to the participants, useful strategies to motivate pregnant women to consent to participate in malaria research could be providing evidence-based education on malaria and research to the general population and encouraging engagement of traditional leaders in research design and community mobilization. Fears and suspicions towards research and researchers, which were amplified during the conduct of Ebola vaccine and drug clinical trials, may influence women’s acceptance and willingness to engage in malaria research. Population’s mistrust in the public healthcare system might hinder their acceptance of research, undermining the probability of their benefiting from any improved malaria control intervention. Conclusion: Benchmarking for acceptable practices from previous public health interventions; building community discussion and dissemination platforms; and mapping communication and information errors from how previous research interventions were explained to the Liberian population, are strategies that might help ensure a safe and fully informed participation of pregnant women in malaria research. Inequity issues impeding access and use of biomedical care for women must be tackled urgently.
A qualitative inquiry with the aim to understand the barriers and opportunities for pregnant women to participate in malaria research in Liberia was conducted. This article reports on community members’ perceptions and attitudes towards research as well as on the contextual aspects that may deter or motivate pregnant women to participate in malaria research. The study was conducted between November 2016 and May 2017 in parallel with a cross-sectional study on the prevalence of malaria among pregnant women attending antenatal care at the Saint Joseph’s Catholic Hospital (SJCH). The SJCH is a not-for-profit maternal referral hospital in Congo Town neighbourhood, in Monrovia. Monrovia, Liberia’s capital, is the largest city in Montserrado County, one of the 15 administrative divisions of the country. In mid-2016, the SJCH, with support from the Barcelona Institute for Global Health (ISGlobal), trained in medical research ethics a group of traditional community representatives and constituted a Community Advisory Board (C.A.B). The SJCH C.A.B members provided advice for the design of this qualitative study. Three groups of key-informants (KI) were invited to participate: (KI1) SJCH medical, laboratory, and management staff: (KI2) Traditional community representatives participants to the C.A.B. outreach activities: (KI3) Pregnant women that previously participated in the malaria prevalence study. All those younger than 18 years and unwilling to give consent were excluded. Convenience sampling was used to approach, face by face, informants for KI1 and KI2 groups. Purposive sampling served to approach, by phone, informants for group KI3. Study recruitment forms from the malaria prevalence study were used to generate a randomized list of pregnant women to approach in this study. The purpose of the study was explained and, if interested, a date was scheduled for the approached individual to meet the social scientist (GMP) at the SJCH facilities. At the scheduled date, informed consent was obtained. Two different information sheet and consent forms were used: one for the in-depth interviews (IDIs) and one for the focus group discussions (FGDs). Participants to the FGDs were reminded of the importance of keeping information shared by the other participants confidential. During the consent process, all informants were made aware of their rights to withdraw from the study at any time with no penalty, and their right to not answer any question they did not want. All participants received a grocery voucher of 10.00 USD for their participation. As data collection and analysis was done iteratively, when saturation [40]—the point at which all concepts and categories were fully understood—was reached, recruitment was discontinued. A thematic guide was used to gain insights about the participants’ views on malaria disease and on health research. Data collection was led in English by a male social scientist (GMP) with experience in qualitative research in sub-Saharan Africa, and aided by a local trained female co-interviewer who used ‘colloquia’ (Liberian English). No one else was present during data collection, which was done in a private office at the SJCH. Most participants, especially from KI2 and KI3, preferred to use ‘colloquia’ when answering the questions posed. Neither the social scientist nor the co-interviewer had any clinical or contractual relationship with any of the interviewees. IDIs and FGDs were taped and were an average of 53 and 72 min in length, respectively. All recordings were transcribed verbatim in a password-protected computer. Transcriptions were cross-checked against the recordings. If there were inconsistencies, the transcripts were amended. All personal identifiers were removed from the transcriptions. Consent forms, recordings and transcriptions received a Unique Identification Number to enable linkage of documents. The transcripts were uploaded into Dedoose software (®SocioCultural Research Consultants, Manhattan Beach, CA). After data coding and analysis, all recordings were deleted to further protect participants’ confidentiality. All transcripts were coded contemporaneously with data collection to ensure that all core concepts were addressed with the participants. No themes and codes were pre-defined. At first, data were line-by-line hand-coded using gerunds and making use of participants’ own words [40]. Once a final coding framework was defined during the first interviews, this framework was used to code the rest of the transcripts. A feminist interpretation of grounded theory was used [41–43]. This interpretation involves that women participants are considered ‘co-generators’ of theory in cooperation with the social scientist. The social scientist is expected to practice reflexivity throughout her/his interactions with the participants, and to be sensitive towards issues of oppression and marginality. This approach prioritizes that research findings are useful for social change and to improve women’s health. Different measures were used to guarantee the trustworthiness of this study. Participants’ answers from the IDIs were triangulated with their answers from the FGDs. During data collection, the social scientist kept a memo journal to reflect on the impact of his interaction with the women participants. Thoughtful care was put to map and analyse deviant cases. Throughout analysis and reporting, women’s own words were used to define concepts and categories. In the Results section, participants’ perspectives are expressed in their own words using ‘italics’. As majority of participants’ narratives were in ‘colloquia’, excerpts have been edited for grammar correction. Excerpts have been carefully chosen to ensure they represent the findings and that the deviant viewpoints are also represented. Additionally, peer-checks were done on the final analysis. This article has been prepared as per qualitative research reporting standards set in the COREQ checklist [44]. The study was approved by the University of Liberia-Pacific Institute of Research & Evaluation Institution Review Board (Monrovia) and by the Hospital Clinic Research Ethics Committee (Barcelona).
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