"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

Postpartum sex taboos and child growth in Tanzania:Implications for child care

The social context and cultural meaning systems shape caregivers' perceptions about child growth and inform their attention to episodes of poor growth. Thus, understanding community members' beliefs about the aetiology of poor child growth is important for effective responses to child malnutrition. We present an analysis of caregivers' narratives on the risks surrounding child growth during postpartum period and highlight how the meanings attached to these risks shape child care practices. We collected data using 19 focus group discussions, 30 in-depth interviews and five key informant interviews with caregivers of under-five children in south-eastern Tanzania. Parental non-adherence to postpartum sexual abstinence norms was a dominant cultural explanation for poor growth and development in a child, including different forms of malnutrition. In case sexual abstinence is not maintained or when a mother conceives while still lactating, caregivers would wean their infants abruptly and completely to prevent poor growth. Mothers whose babies were growing poorly were often stigmatized for breaking sex taboos by the community and by health care workers. The stigma that mothers face reduced their self-esteem and deterred them from taking their children to the child health clinics. Traditional rather than biomedical care was often sought to remedy growth problems in children, particularly when violation of sexual abstinence was suspected. When designing culturally sensitive interventions aimed at promoting healthy child growth and effective breastfeeding in the community, it is important to recognize and address people's existing misconceptions about early resumption of sexual intercourse and a new pregnancy during lactation period.</p

Developmental profiles of infants with an FMR1 premutation

Abstract Background Emerging evidence suggests that a subset of FMR1 premutation carriers is at an increased risk for cognitive, emotional, and medical conditions. However, because the premutation is rarely diagnosed at birth, the early developmental trajectories of children with a premutation are not known. Methods This exploratory study examined the cognitive, communication, and social-behavioral profiles of 26 infants with a premutation who were identified through participation in a newborn screening for fragile X syndrome pilot study. In this study, families whose newborn screened positive for an FMR1 premutation were invited to participate in a longitudinal study of early development. Twenty-six infants with the premutation and 21 matched, screen-negative comparison babies were assessed using validated standardized measures at 6-month intervals starting as young as 3 months of age. The babies were assessed up to seven times over a 4-year period. Results The premutation group was not statistically different from the comparison group on measures of cognitive development, adaptive behavior, temperament, or overall communication. However, the babies with the premutation had a significantly different developmental trajectory on measures of nonverbal communication and hyperresponsivity to sensory experiences. They also were significantly more hyporesponsive at all ages than the comparison group. Cytosine-guanine-guanine repeat length was linearly associated with overall cognitive development. Conclusions These results suggest that infants with a premutation may present with subtle developmental differences as young as 12 months of age that may be early markers of later anxiety, social deficits, or other challenges thought to be experienced by a subset of carriers

"In a situation of rescuing life"

Background: Diabetes mellitus is an emerging public health problem in Tanzania. For the community and the health system to respond adequately to this problem, it is important that we understand the meanings given to its symptoms, and the care-seeking practices of individuals. Methods: To explore collective views on the meanings given to diabetes symptoms, we conducted nine focus group discussions with adult diabetes patients and members of the general community. To gain a better understanding of how the meanings in the community inform the care-seeking practices of individuals, 19 in-depth interviews were conducted with diabetes patients. The data were analyzed using principles of grounded theory and applying cultural schema theory as a deductive framework. Results: In the communities and among the patients, knowledge and awareness of diabetes are limited. Both people with diabetes and community members referred to their prevailing cultural meaning systems and schemas for infectious diseases to interpret and assign meaning to the emerging symptoms. Diabetes patients reported that they had initially used anti-malarial medicines because they believed their symptoms—like headache, fever, and tiredness—were suggestive of malaria. Schemas for body image informed the meaning given to diabetes symptoms similar to those of HIV, like severe weight loss. Confusion among members of the community about the diabetes symptoms instigated tension, causing patients to be mistrusted and stigmatized. The process of meaning-giving and the diagnosis of the diabetes symptoms was challenging for both patients and health care professionals. Diabetes patients reported being initially misdiagnosed and treated for other conditions by medical professionals. The inability to assign meaning to the symptoms and determine their etiologies informed the decision made by some patients to consult traditional healers, and to associate their symptoms with witchcraft causes. Conclusion: The meanings given to diabetes symptoms and the care-seeking practices described in the study are shaped by the prevailing cultural schemas for infectious diseases and their treatments. Efforts to educate people about the symptoms of diabetes and to encourage them to seek out appropriate care should build on the prevailing cultural meaning system and schemas for diseases, health and illness

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

Fragile X Newborn Screening: Lessons Learned From a Multisite Screening Study

BACKGROUND: Delays in the diagnosis of children with fragile X syndrome (FXS) suggest the possibility of newborn screening as a way to identify children earlier. However, FXS does not have a proven treatment that must be provided early, and ethical concerns have been raised about the detection of infants who are carriers. This article summarizes major findings from a multisite, prospective, longitudinal pilot screening study. METHODS: Investigators in North Carolina, California, and Illinois collaborated on a study in which voluntary screening for FXS was offered to parents in 3 birthing hospitals. FXS newborn screening was offered to >28 000 families to assess public acceptance and determine whether identification of babies resulted in any measurable harms or adverse events. Secondary goals were to determine the prevalence of FMR1 carrier gene expansions, study the consent process, and describe early development and behavior of identified children. RESULTS: A number of publications have resulted from the project. This article summarizes 10 "lessons learned" about the consent process, reasons for accepting and declining screening, development and evaluation of a decision aid, prevalence of carriers, father participation in consent, family follow-up, and maternal reactions to screening. CONCLUSIONS: The project documented public acceptance of screening as well as the challenges inherent in obtaining consent in the hospital shortly after birth. Collectively, the study provides answers to a number of questions that now set the stage for a next generation of research to determine the benefits of earlier identification for children and families

Farnesoid X Receptor and its ligands inhibit the function of platelets

Objective - While initially seemingly paradoxical due to the lack of nucleus, platelets possess a number of transcription factors that regulate their function through DNA-independent mechanisms. These include the Farnesoid X Receptor (FXR), a member of the superfamily of ligand-activated transcription factors that has been identified as a bile acid receptor. In this study, we show that FXR is present in human platelets and FXR ligands, GW4064 and 6-ECDCA, modulate platelet activation nongenomically. Approach and Results - FXR ligands inhibited the activation of platelets in response to stimulation of collagen or thrombin receptors, resulting in diminished intracellular calcium mobilization and secretion, fibrinogen binding and aggregation. Exposure to FXR ligands also reduced integrin alphaIIbbeta3 outside-in signaling and thereby reduced the ability of platelets to spread and to stimulate clot retraction. FXR function in platelets was found to be associated with the modulation of cGMP levels in platelets and associated downstream inhibitory signaling. Platelets from FXR-deficient mice were refractory to the actions of FXR agonists on platelet function and cyclic nucleotide signaling, firmly linking the non-genomic actions of these ligands to the FXR receptor. Conclusion – This study provides support for the ability of FXR ligands to modulate platelet activation. The athero-protective effects of GW4064, with its novel antiplatelet effects, indicate FXR as a potential target for prevention of athero-thrombotic disease

Methods to detect faulty splices in the superconducting magnet system of the LHC

The incident of 19 September 2008 at the LHC was caused by a faulty inter-magnet splice of about 200 nΩ resistance. Cryogenic and electrical techniques have been developed to detect other abnormal splices, either between or inside the magnets. The existing quench protection system can be used to detect internal splices with R&gt;20 nΩ. Since this system does not cover the bus between magnets, the cryogenic system is used to measure the rate of temperature rise due to ohmic heating. Accuracy of a few mK/h, corresponding to a few Watts, has been achieved, allowing detection of excess resistance, if it is more than 40 nΩ in a cryogenic subsector (two optical cells). Follow-up electrical measurements are made in regions identified by the cryogenic system. These techniques have detected two abnormal internal magnet splices of 100 nΩ and 50 nΩ respectively. In 2009, this ad hoc system will be replaced with a permanent one to monitor all splices at the nΩ level

Character evolution and missing (morphological) data across Asteridae

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