A qualitative study of health education experiences and self-management practices among patients with type 2 diabetes at Malamulo Adventist Hospital in Thyolo District, Malawi.

BACKGROUND: The aim of this study was to understand the perceptions and experiences of health education and self-management practices on Malamulo Adventist Hospital type 2 diabetic patients. METHODS: In this qualitative study, key informant interviews (KIIs; n=4) and focus group discussions (3 FGDs; n=16) were conducted amongst type 2 diabetes patients who had been treated at Malamulo Adventist Hospital in southern Malawi at least once. Key informant interviews and focus group discussions were audio recorded, transcribed verbatim and translated for analysis. Grounded theory methods were used to identify line-by-line emerging codes and were categorized and examined in Atlas.ti. The data was analyzed for emergent themes and supported by critical quotes. RESULTS: Content analysis revealed participants had a positive regard for the diabetes education classes and had satisfactory health literacy. Participants expressed their ability to integrate diabetes education, such as exercise into their lifestyle. Due to financial constraints subjects experienced trouble maintaining their medication regimen, and had difficulty adopting healthier nutritional alternatives. Although patients expressed efficacy in controlling their blood sugar they subsequently expressed having limited knowledge when dealing with diabetes complications. CONCLUSIONS: Diabetes self-management is comprised of a complex set of processes. Patients with type 2 diabetes at Malamulo Adventist Hospital are deeply impacted by these processes which includes their understanding of the disease process, effects of medication, economic challenges to acquiring health care services and medications, and one's unique life experience. For all patients with type 2 diabetes to successfully manage their condition, support from their family, the medical community, and health policies must be readily available.

Is it ethical to prevent secondary use of stored biological samples and data derived from consenting research participants? The case of Malawi.

BACKGROUND: This paper discusses the contentious issue of reuse of stored biological samples and data obtained from research participants in past clinical research to answer future ethical and scientifically valid research questions. Many countries have regulations and guidelines that guide the use and exportation of stored biological samples and data. However, there are variations in regulations and guidelines governing the reuse of stored biological samples and data in Sub-Saharan Africa including Malawi. DISCUSSION: The current research ethics regulations and guidelines in Malawi do not allow indefinite storage and reuse of biological samples and data for future unspecified research. This comes even though the country has managed to answer pertinent research questions using stored biological samples and data. We acknowledge the limited technical expertise and equipment unavailable in Malawi that necessitates exportation of biological samples and data and the genuine concern raised by the regulatory authorities about the possible exploitation of biological samples and data by researchers. We also acknowledge that Malawi does not have bio-banks for storing biological samples and data for future research purposes. This creates room for possible exploitation of biological samples and data collected from research participants in primary research projects in Malawi. However, research ethics committees require completion and approval of material transfer agreements and data transfer agreements for biological samples and data collected for research purposes respectively and this requirement may partly address the concern raised by the regulatory authorities. Our concern though is that there is no such requirement for biological samples and data collected from patients for clinical or diagnostic purposes. In conclusion, we propose developing a medical data and material transfer agreement for biological samples and data collected from patients for clinical or diagnostic purposes in both public and private health facilities that may end up in research centers outside Malawi. We also propose revision of the current research ethics regulations and guidelines in Malawi in order to allow secondary use of biological samples and data collected from primary research projects as a way of maximizing the use of collected samples and data. Finally, we call for consultation of all stakeholders within the Malawi research community when regulatory authorities are developing policies that govern research in Malawi.