'Rumours' and clinical trials: a retrospective examination of a paediatric malnutrition study in Zambia, southern Africa

Abstract

BackgroundMany public health researchers conducting studies in resource-constrained settings have experienced negative 'rumours' about their work; in some cases they have been reported to create serious challenges and derail studies. However, what may appear superficially as 'gossip' or 'rumours' can also be regarded and understood as metaphors which represent local concerns. For researchers unaccustomed to having concerns expressed from participants in this manner, possible reactions can be to be unduly perturbed or conversely dismissive.This paper represents a retrospective examination of a malnutrition study conducted by an international team of researchers in Zambia, Southern Africa. The fears of mothers whose children were involved in the study and some of the concerns which were expressed as rumours are also presented. This paper argues that there is an underlying logic to these anxieties and to dismiss them simply as 'rumours' or 'gossip' would be to overlook the historic and socio-economic factors which have contributed to their production.MethodsQualitative interviews were conducted with the mothers whose children were involved in the study and with the research nurses. Twenty five face-to-face interviews and 2 focus group discussions (FGDs) were conducted with mothers. In addition, face-to-face interviews were conducted with research nurses participating in the trial.ResultsA prominent anxiety expressed as rumours by the mothers whose children were involved in the study was that recruitment into the trial was an indicator that the child was HIV-infected. Other anxieties included that the trial was a disguise for witchcraft or Satanism and that the children's body parts would be removed and sold. In addition, the liquid, milk-based food given to the children to improve their nutrition was suspected of being insufficiently nutritious, thus worsening their condition.The form which these anxieties took, such as rumours related to the stealing of body parts and other anxieties about a stigmatised condition, provide an insight into the historical, socio-economic and cultural influences in such settings.ConclusionsEmploying strategies to understand local concerns should accompany research aims to achieve optimal success. The concerns raised by the participants we interviewed are not unique to this study. They are produced in countries where the historic, socio-economic and cultural settings communicate anxieties in this format. By examining this study we have shown that by contextualizing these 'rumours', the concerns they express can be constructively addressed and in turn result in the successful conduct of research aims.

A systematic review of qualitative findings on factors enabling and deterring uptake of HIV testing in Sub-Saharan Africa

“…In Zambia for instance, blood drawn for HIV testing was viewed as being used for satanic rituals [61,77]. These findings corroborate previous medical research conducted in Gambia and Zambia where local people were highly suspicious of and shunned medical tests which involved the drawing of blood [78,79]. …”

Stakeholder Views of Clinical Trials in Low- and Middle-Income Countries: A Systematic Review

“…"Floor beds," which were temporary beds, could be found on the wards due to the large number of patients and insuffi cient resources. 49 However, it was acknowledged that: "being completely altruistic and participating in research that is [going to] benefi t society and future generations, is sometimes a little hard to expect from people who're struggling to keep their family fed." (Site staff) 40 Ethical pluralism "Many of the people in the regulatory divisions in the US or the West have really conducted trials in the West.…”

“…22 These rumors and fears of stigmatization for participation may be constructively addressed by contextualization, community education to improve health literacy, and engaging community representatives to help build trust by fostering mutual understanding, respect, and equity. 28,49,[52][53][54] Community engagement is a dynamic process and a constantly changing set of negotiated relationships to address expectations and challenges tailored to the local setting. 55,56 Stakeholders recommended ethnographic research in preparation for commencing a trial within a community, to improve feasibility, methodologic rigor, and acceptability of trial protocol, while safeguarding the health and interests of child participants.…”

Malnutrisi Akut Berat dan Determinannya pada Balita di Wilayah Rural dan Urban

“…7,8,9 Faktor-faktor lain selain faktor kesehatan, tetapi juga merupakan masalah utama gizi buruk adalah stigma masyarakat, sosial budaya, kemiskinan, pendidikan rendah, ketersediaan pangan dan kesempatan kerja sebagai dampak urbanisasi. 11,12 Hal ini sesuai dengan salah satu karakteristik bahwa pekerjaan orang tua balita malnutrisi sebagian besar adalah non PNS.…”

“…10 Faktor-faktor lain selain faktor kesehatan, tetapi juga merupakan masalah utama gizi buruk adalah stigma masyarakat, sosial budaya, kemiskinan, pendidikan rendah, ketersediaan pangan dan kesempatan kerja sebagai dampak urbanisasi. 11,12 Penelitian ini bertujuan untuk mengidentifikasi kejadian malnutrisi akut berat dan determinannya pada balita di wilayah perkotaan dan perdesaan di Yogyakarta.…”