"It is the medicines that keep us alive":lived experiences of diabetes medication use and continuity among adults in Southeastern Tanzania

Background: Diabetes is a chronic condition which requires many patients to use medications for the remainder of their lives. While this regimen is demanding, little research has been done on the experiences individuals have with diabetes medication use and the continuity of use, especially patients from rural areas of Tanzania. This study explores the lived experiences of diabetes medication use and the continuity of use among adult diabetes patients from rural communities with limited access to diabetes medicines.Methods: We conducted 19 in-depth interviews to explore patients' experiences with diabetes medication use and the continuity of use. We employed the 5As of access to care to situate the behavioral practices surrounding diabetes medication use in the study settings. The data analysis followed grounded theory principles, and was conducted with the help of NVivo 9.Results: Study participants expressed positive attitudes toward the use of diabetes medicines, but also concerns about affordability. The patients employed two main strategies for dealing with the cost. The first was to increase their available funds by spending less money on family needs, selling household property, asking family and friends for money, or borrowing cash. They also reported sourcing medicines from pharmacies to save on consultation and laboratory costs. Second, participants reported using less than the recommended dosage or skipping doses, and sharing medicines. The geographic accessibility of diabetes service providers, the availability of medication, and the organization of the diabetes services were also cited as barriers to taking medications and to using them continuously.Conclusions: The strategies employed by the people in this study illustrate their resilience in the face of poverty and failing health care systems. More comprehensive strategies are therefore needed to encourage consistent medication use among people with chronic conditions. These strategies could include the reduction of prices by pharmaceuticals, the strengthening of community risk-pooling mechanisms and sustained health campaigns aimed at patients and the community.</p

Health-seeking behaviour among adults in the context of the epidemiological transition in Southeastern Tanzania:A focus on malaria and diabetes

Health-seeking behaviour among adults in the context of epidemiological transition in Southeastern Tanzania: a focus on malaria and diabetes This study set out to assess cultural aspects shaping health-seeking behaviour for malaria and diabetes among adults in Tanzania, a country undergoing the epidemiological transition. The research was conducted in a rural district in which malaria has been a predominant cause of illness and which increasingly experiences diabetes as an emergent cause of ill health. The study examined how cultural aspects shape health-seeking behaviour. The theoretical insights of D’Andrade’s concept of Cultural Schemas and the Health Belief Model (HBM) were applied to guide a line of inquiry for the research. The study showed that malaria self-care is commonly practiced, which can be explained by the long-standing knowledge about the illness within this community. Unlike malaria, however, diabetes is a relatively new condition and the knowledge about its signs and symptoms is limited. People in this setting used the prevailing cultural meaning system regarding malaria to interpret the emerging diabetes symptoms. Anti-malarial medicines were often used as initial responses to diabetes symptoms. Failure by patients and health professionals to interpret the emerging symptoms frequently led to consultations with traditional healers and to association of the symptoms with witchcraft. Malaria services are easily accessed in the primary health facilities, whereas patients could hardly obtain diabetes services; this unavailability of services – and knowledge – proved to be an obstacle to the proper use of medication. The study shows that health-seeking behaviour for malaria and diabetes is shaped by cultural, individual, and health facility factors

"I Don't Have Options but to Persevere." Experiences and practices of care for HIV and diabetes in rural Tanzania: a qualitative study of patients and family caregivers.

The high prevalence of chronic diseases in Tanzania is putting a strain on the already stretched health care services, patients and their families. This study sought to find out how health care for diabetes and HIV is perceived, practiced and experienced by patients and family caregivers, to inform strategies to improve continuity of care. Thirty two in-depth interviews were conducted among 19 patients (10 HIV, 9 diabetes) and 13 family caregivers (6 HIV, 7 diabetes). Diabetes patients and caregivers were accessed through one referral facility. HIV patients and caregivers were accessed through HIV clinics at the district hospital, one health centre and one dispensary respectively. The innovative care for chronic conditions framework informed the study design. Data was analysed with the help of Nvivo 10. Three major themes emerged; preparedness and practices in care, health care at health facilities and community support in care for HIV and diabetes. In preparedness and practices, HIV patients and caregivers knew more about aspects of HIV than did diabetes patients and caregivers on diabetes aspects. Continued education on care for the conditions was better structured for HIV than diabetes. On care at facilities, HIV and diabetes patients reported that they appreciated familiarity with providers, warm reception, gentle correction of mistakes and privacy during care. HIV services were free of charge at all levels. Costs involved in seeking services resulted in some diabetes patients to not keep appointments. There was limited community support for care of diabetes patients. Community support for HIV care was through community health workers, patient groups, and village leaders. Diabetes and HIV have socio-cultural and economic implications for patients and their families. The HIV programme is successfully using decentralization of health services, task shifting and CHWs to address these implications. For diabetes and NCDs, decentralization and task shifting are also important and, strengthening of community involvement is warranted for continuity of care and patient centeredness in care. While considering differences between HIV and diabetes, we have shown that Tanzania's rich experiences in community involvement in health can be leveraged for care and treatment of diabetes and other NCDs

Experiences of type 2 diabetes in sub-Saharan Africa: a scoping review

Background: The prevalence of diabetes in Sub-Saharan Africa (SSA) is growing rapidly. Qualitative research on experiences of type 2 diabetes in SSA is emerging, but no qualitative synthesis has been attempted. This scoping review aims to redress this lack of synthesis and to extract policy-relevant suggestions from the literature. Methods: Scoping review methodology was employed. Eleven online databases were searched (CINAHLplus, Cochrane Library, EBESCOhost, GALE Group, MEDLINE, Pro-Quest, Pscyhinfo, Pubmed, SCOPUS, Web of Science, WorldCat), using terms designed to identify qualitative studies of experiences of diabetes in SSA. Findings from records identified in the search were analysed inductively in NVivo 10 in three stages, to produce an analytical synthesis of studies of diabetes experiences in SSA. Results: Searches were conducted in 2017 and identified 2743 records, which were reduced to 21 after screening. The earliest identified record was published in 2003 and there was a clustering of records published between 2014 and 2016. The 21 records were based in eight SSA countries: Cameroon, Ethiopia, Ghana, Senegal, South Africa, Tanzania, Uganda, and Zimbabwe. A majority of the studies were conducted in Ghana (5) and South Africa (5), limiting the generalisability of our findings. The analytical synthesis produced five themes: identifying type 2 diabetes (how participants conceptualise and position their illnesses); hybridity of diabetes care (how multiple forms of care are often blended and/or pursued concurrently); impediments, improvisation and diabetes management (describing challenges faced, how these are responded to and management via diet and physical activity); sources of support (who supports participants and how); and diabetes and HIV/AIDs (the ways in which the two conditions are sometimes confused and how stigma is often experienced). Conclusions: The experiences of people with type 2 diabetes in SSA are under-researched across the region, pointing to a gap in knowledge. Interpreting our analytical synthesis, we suggest three priority areas for policy makers and implementers. Firstly, uncertainties relating to access to diabetes treatment need to be reduced. Secondly, more needs to be done to acknowledge and alleviate the economic struggles that those with diabetes face. Finally, high-quality information and education would improve recognition and management of the condition

Transfigurations of aging

To date, most social anthropological studies on aging in African contexts focus on care for poor older people provided by related others. The focus of this article is different as it focuses on older people with better financial means than the average: civil servants belonging to Dar es Salaam’s middle class. Furthermore, this contribution shifts the focus from care provided through related others to practices of everyday self-care, the care that these older people provide for themselves with the help of relatives in Tanzania and the USA. In order to stay healthy and cope with diagnosed chronic conditions, older participants in this study engage in physical exercises, eat ‘good food’, and go for regular medical check-ups. This article argues that these health-promoting self-care practices of older urban dwellers reflect changing experiences of aging, health, and care, and point to transfigurations of the social imaginary of aging in Dar es Salaam’s middle class

Illness experiences of diabetes in the context of malaria in settings experiencing double burden of disease in southeastern Tanzania

BACKGROUND: Tanzania is doubly burdened with both non-communicable and infectious diseases, but information on how Tanzanians experience the co-existence of these conditions is limited. Using Kleinman's eight prompting questions the study synthesizes explanatory models from patients to describe common illness experiences of diabetes in a rural setting where malaria is the predominant health threat. METHODS: We conducted 17 focus group discussions with adult members of the general community, diabetes patients, neighbours and relatives of diabetes patients to gain insight into shared experiences. To gain in-depth understanding of the individual illness experiences, we conducted 41 in-depth interviews with malaria or diabetes patients and family members of diabetes patients. The analysis followed grounded theory principles and the illness experiences were derived from the emerging themes. RESULTS: The illness experiences showed that malaria and diabetes are both perceived to be severe and fatal conditions, but over the years people have learned to live with malaria and the condition is relatively manageable compared with diabetes. In contrast, diabetes was perceived as a relatively new disease, with serious life-long consequences. Uncertainty, fear of those consequences, and the increased risk for severe malaria and other illnesses impacted diabetes patients and their families' illness experiences. Unpredictable ailments and loss of consciousness, memory, libido, and functional incapability were common problems reported by diabetes patients. These problems had an effect on their psychological and emotional health and limited their social life. Direct and indirect costs of illness pushed individuals and their families further into poverty and were more pronounced for diabetes patients. CONCLUSION: The illness experiences revealed both malaria and diabetes as distressing conditions, however, diabetes showed a higher level of stress because of its chronicity. Strategies for supporting social, emotional, and psychological well-being that build on the patient accounts are likely to improve illness experiences and quality of life for the chronically ill patient

Managing Chronicity in Unequal States

By portraying the circumstances of people living with chronic conditions in radically different contexts, from Alzheimer’s patients in the UK to homeless people with psychiatric disorders in India, Managing Chronicity in Unequal States offers glimpses of what dealing with medically complex conditions in stratified societies means. While in some places the state regulates and intrudes on the most intimate aspects of chronic living, in others it is utterly and criminally absent. Either way, it is a present/absent actor that deeply conditions people’s opportunities and strategies of care. This book explores how individuals, groups and communities navigate uncertain and unequal healthcare systems, in which inherent moral judgements on human worth have long-lasting effects on people’s wellbeing. This is key reading for anyone wishing to deconstruct the issues at stake when analysing how care and chronicity are entangled with multiple institutional, economic, and other circumstantial factors. How people access the available informal and formal resources as well as how they react to official diagnoses and decisions are important facets of the management of chronicity. In the arena of care, people with chronic conditions find themselves negotiating restrictions and handling issues of power and (inter)dependency in relationships of inequality and proximity. This is particularly relevant in current times, when care has given in to the lure of the market, and the possibility of living a long and fulfilling life has been drastically reduced, transformed into a ‘reward’ for the few who have been deemed worthy of it