Knowledge and Perceptions about Clinical Trials and the Use of Biomedical Samples: Findings from a Qualitative Study in Rural Northern Ghana

Abstract

IntroductionClinical trials conducted in sub-Saharan Africa have helped to address the prevalent health challenges. The knowledge about how communities perceive clinical trials is however only now evolving. This study was conducted among parents whose children participated in past clinical trials in northern Ghana to assess their knowledge and perceptions of clinical trials and the use of biomedical samples.MethodThis was a qualitative study based on eighty in-depth interviews with parents. The participants were randomly selected from among parents whose children were enrolled in a clinical trial conducted in the Kassena-Nankana districts between 2000 and 2003. The interviews were transcribed and coded into emergent themes using Nvivo 9 software. The thematic analysis framework was used to analyze the data.ResultsStudy participants reported that clinical trials were carried out to determine the efficacy of drugs and to make sure that these drugs were suitable for human beings to use. The conduct of clinical trials was perceived to have helped to reduce the occurrence of diseases such as malaria, cerebrospinal meningitis and diarrhea. Quality of care was reported to be better in clinical trials than in the routine care. Parents indicated that participation in clinical trials positively influenced their health-seeking behavior. Apprehensions about blood draw and the use to which samples were put were expressed, with suspicion by a few participants that researchers sold blood samples. The issue of blood draw was most contentious.ConclusionParents perception about the conduct of clinical trials in the study districts is generally positive. However, misconceptions made about the use of blood samples in this study must be taken seriously and strategies found to improve transparency and greater community acceptability.

Caregiver and community perceptions and experiences participating in an infant malaria prevention trial of PfSPZ Vaccine administered by direct venous inoculation: a qualitative study in Siaya County, western Kenya

“…The blood draws emerged as a dominant barrier to trial participation and was the most frequently cited reason for pre-vaccination consent withdrawal. Objections to the blood draw stemmed almost exclusively from fathers and mothers-in-law, were founded in concerns surrounding infant safety, and were influenced by rumours circulating in the study communities surrounding malicious ulterior motives by study staff (e.g., selling children's blood for money)-factors consistent with community objections to vaccines and experimental commodities documented in other trial/implementation settings [35][36][37][38][39][40][41]. Sustained parental and community anxieties around the blood draws reinforced skepticism and resulted in early participant termination.…”

“…Objections to blood draws in the parent PfSPZ Vaccine trial, as documented extensively in other trial contexts, were importantly accompanied by rumours of unlicensed blood sharing and selling by trialists. Evidence from Gambia [41], Ghana [36], and Tanzania [42] suggest that while these rumours are oftentimes perpetuated by peripheral actors (i.e., marginalized individuals in communities unreached by available health services), the presence of these rumours are demonstrative of "social distancing" [43], or historically rooted asymmetries between health institutions and the communities in which they work. While this study could neither establish the origin of these rumours nor verify whether those perpetuating rumours participated in any trial mobilization or sensitization activities, the presence of these rumours, in spite of intentional efforts by study staff to communicate the purpose of these blood draws through trusted entities (i.e., community leaders, advisory boards), reveals unresolved sources of community mistrust in health institutions.…”

‘Researchers have love for life’: opportunities and barriers to engage pregnant women in malaria research in post-Ebola Liberia

“…Most of the fears and misconceptions described have been reported in other settings. For instance, fear to give blood that could be ‘sold’ , used to ‘fabricate’ other viruses, or tested for stigmatizing diseases has also been reported in Ghana [ 46 ] and in The Gambia [ 39 ]. Nevertheless, it must be noted that Liberia has not experienced as much malaria research as other West African countries.…”

Implementing a Cold-Chain System for Nutritional Assessment in Rural Uganda; Field Experiences from FtF Nutrition Innovation Lab Cohort Study

“…We had to adjust how samples were transported from the field to reduce hemolysis by using enhanced cushioning inside the cold boxes. Culturally, blood taking is resisted by many parents [10] in many societies same in the study communities. Our use of the local boda-boda system, devotion to training and quality, and engagement with the communities eased these challenges.…”