Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda.

INTRODUCTION: HIV treatment and disclosure guidelines emphasize the importance of communicating diagnosis and treatment to infected children in ways that are appropriate to children's developmental stage and age. Minimal attention, however, has been given to communication challenges confronted by HIV-infected children and their caregivers. This study examined the tensions between children and their caregivers arising from differing perspectives regarding when and what to communicate about antiretroviral therapy (ART). METHODS: This qualitative study was conducted between November 2011 and December 2012 and involved 29 HIV-infected children aged 8-17 years on ART and their caregivers. Data were collected through observations and in-depth interviews, which took place in homes, treatment centres and post-test clubs. Children and caregivers were sampled from among the 394 HIV-infected children and (their) 393 caregivers who participated in the cross-sectional survey that preceded the qualitative study. ATLAS.ti. Version 7 was used in the management of the qualitative data and in the coding of the emerging themes. The data were then analyzed using content thematic analysis. RESULTS: While the children felt that they were mature enough to know what they were suffering and what the medications were for, the caregivers wanted to delay discussions relating to the children's HIV diagnosis and medication until they felt that the children were mature enough to deal with the information and keep it a secret and this caused a lot of tension. The children employed different tactics including refusing to take the medicines, to find out what they were suffering from and what the medications were for. Children also had their own ideas about when, where and with whom to discuss their HIV condition, ideas that did not necessarily coincide with those of their caregivers, resulting in tensions. CONCLUSIONS: Guidelines should take into consideration differing perceptions of maturity when recommending ages at which caregivers should communicate with their children about diagnosis and ART. Health care providers should also encourage caregivers to recognize and respect children's efforts to learn about and manage their condition. Children's questions and expressions of feelings should be treated as openings for communication on these issues.

Knowing hypertension and diabetes: Conditions of treatability in Uganda.

In Uganda, hypertension and diabetes have only recently been included in the health policy agenda. As they become treatable disorders, they take on more distinct contours in people's minds. This article relates knowledge about these two conditions to health institutions and technology for diagnosing and treating them. The response to the AIDS epidemic in Uganda provides an important context for, and contrast with, the emergence of hypertension and diabetes as social phenomena. Ethnographic fieldwork shows the interplay between experience of these conditions and the political economy of treatability.

The visibility of non-communicable diseases in Northern Uganda.

BACKGROUND: WHO and Uganda's Ministry of Health emphasize the need to address the growing burden of non-communicable diseases (NCDs). Treatment for these conditions is urgent in northern Uganda where war has negatively affected both health and the public health care system. OBJECTIVES: We aimed to explore the recognized presence of selected chronic conditions in the out-patient population and to relate this 'visibility' to the ability of health units to diagnose and treat them. METHODS: At six health facilities we reviewed patient registers for one month to determine the frequency of hypertension, diabetes, depression, and post traumatic stress disorder (PTSD). We checked the availability of diagnostic instruments and medicines, and interviewed health workers. RESULTS: The four conditions were rarely diagnosed in the outpatient population. Hypertension was the most common, but still constituted under 1% of diagnoses. Patterns of diagnosis were uneven, with higher frequency of particular diagnoses at some health facilities. Diagnostic equipment was not sufficient and screening was irregular. Medicine was mostly available although stockouts of some relevant drugs were reported. CONCLUSIONS: The four conditions are relatively invisible in the outpatient population. Greater visibility would be facilitated by regular clinic days for hypertension and diabetes, availability and regular use of diagnostic instruments, and a more reliable supply of the relevant medicines.

Measuring risk, managing values: health technology and subjectivity in Denmark.

Based on fieldwork among Danes with a diagnosed risk of type 2 diabetes or cardiovascular disease, this paper investigates how the technological possibilities of diagnosing and monitoring invisible risks shape understandings of health and form subjectivity. It focuses on the experiences of being diagnosed with a risk condition in the form of high blood pressure or elevated blood glucose and the ensuing use of measuring devices. It argues that measurements of these conditions can be seen as 'formative processes' that produce and maintain a view of health as something that can best be known through the use of medical technology. The numerical values such measurements yield are seen as true indicators of health, and doing something about risk conditions is felt to be a personal imperative. The formative processes illustrated in this paper are motivational and thought provoking. The informants do not experience new symptoms after being diagnosed; rather they reflect upon their health in a new way and numbers become associated with personal responsibility and morality. However, because numbers influence subjective experiences, they can come to take up too much space in everyday life. Therefore, people have reservations about how often they should measure their values at home. The formative processes of being diagnosed with a risk condition are thus about subjectivity both in the sense of being subject to the demands of living with an illness and of being a subject who acts to keep life from being colonized by concerns about health.

Therapeutic research in low-income countries: studying trial communities.

Social scientists undertaking studies of transnational medical research in developing countries focus on 'trial communities': networks of funders, institutions, researchers, clinical staff, fieldworkers and study participants. They relate these to the political economy that brings powerful research resources to poor settings. Whereas bioethicists tend to consider universal ethical requirements, social scientists examine how ethics are practiced in given situations in the light of the concerns and interests held by different parties involved in medical research. In conditions of poverty, high morbidity and weak public health services, research subjects are heavily induced by the prospect of high quality medical care and other benefits that researchers seem to offer. Studies of medical research undertaken by well-established internationally funded institutions in Africa show that parents are keen to have their children 'join' projects at these organisations. They assess benefits and risks less in terms of specific research projects and more in terms of their overall trust in the care these institutions are known to have provided previously for others in the community. Bioethics should widen its scope beyond concern with protecting individual subjects from the risks of specific research projects. It should recognise that clinical and research functions are indistinguishable for many participants, who want information on results of clinical investigations and sustained support for improving the health of their children.

Chronicity and control: framing 'noncommunicable diseases' in Africa.

This paper proposes a way of framing the study of 'noncommunicable diseases' within the more general area of chronic conditions. Focusing on Africa, it takes as points of departure the situation in Uganda, and the approach to health issues developed by a group of European and African colleagues over the years. It suggests a pragmatic analysis that places people's perceptions and practices within a field of possibilities shaped by policy, health care systems, and life conditions. In this field, the dimensions of chronicity and control are the distinctive analytical issues. They lead on to consideration of patterns of sociality related to chronic conditions and their treatment.

Health identities and subjectivities: the ethnographic challenge.

The formation of identity and subjectivity in relation to health is a fundamental issue in social science. This overview distinguishes two different approaches to the workings of power in shaping senses of self and other. Politics of identity scholars focus on social movements and organizations concerned with discrimination, recognition, and social justice. The biopower approach examines discourse and technology as they influence subjectivity and new forms of sociality. Recent work in medical anthropology, especially on chronic problems, illustrates the two approaches and also points to the significance of detailed comparative ethnography for problematizing them. By analyzing the political and economic bases of health, and by embedding health conditions in the other concerns of daily life, comparative ethnography ensures differentiation and nuance. It helps us to grasp the uneven effects of social conditions on the possibilities for the formation of health identities and subjectivities.

Poor parenting: teenagers' views on adolescent pregnancies in eastern Uganda.

In Uganda teenage pregnancy is considered a problem for moral and social, as well as health, reasons. This qualitative stud,y in Busia District focused on the views of teenagers themselves as expressed in 9 focus group discussions with girls and boys. Their perspectives were contrasted with those of community leaders and mothers of adolescents. The young people blamed teenage pregnancy on failures of the parental generation. They asserted that parents and guardians were both too lenient and too harsh, that they failed to provide for their daughters' needs, and that they pressured them into early marriages instead of giving priority to education. Although poverty and family breakdown were recognized as underlying structural causes of parental failure, the teenagers experienced these factors in their everyday lives as problems with their parents and guardians. The teenagers expressed the 'enlightened' view that adolescent pregnancy was undesireable, even though many girls have few alternatives to marriage and childbearing.

Working in a decentralized system: a threat to health workers' respect and survival in Uganda.

This article contributes to the sparse empirical material on the position of health workers within health sector reform. Using qualitative data gathered in 1999, it shows how staff at rural health units in Tororo and Busia Districts experienced the reforms during the first 5 years of decentralization in Uganda. The analysis builds on a framework proposed by Franco et al. to examine the relation between health sector reform and health worker motivation. However, it diverges from their objective description of the factors determining motivation, giving more emphasis to the subjective perspective of the health workers. The categorical distinction between organizational and cultural/community factors was less relevant for them as actors. Two themes cross-cut their lives inside and outside the health facilities: professional identity, which entailed recognition by both the organization and members of the community; and 'survival strategies', which were necessitated by the desire to maintain a status and lifestyle befitting a professional. Reform weakened workers' positions as professionals and hindered facility-based 'survival strategies' that helped them get by on poor salaries. With an overall fall in remuneration, they were more motivated than ever to establish supplementary sources of income outside the formal government health care system.