'Experts', 'partners' and 'fools': exploring agency in HIV treatment seeking among African migrants in London

In an attempt to promote patient agency and foster more egalitarian relationships between patients and doctors, discourse concerning health and wellbeing in the UK has increasingly centred around the notion of informed and 'expert' patients who are able to effectively input into the direction and management of their own health care and treatment. While the relationship between a patient and their doctor can play a vital role in influencing the treatment decisions and health-related outcomes of people living with long term illness, little is known about the ways in which people living with HIV actually perceive their relationship with their doctors, nor the implications this may have for the types of treatment they may seek to use and the related information that they share. Drawing on 11 focus group discussions and 20 repeat interviews undertaken in 2008-2009 with HIV-positive adult migrants from Zambia, Zimbabwe and South Africa living in the UK, this paper argues that patient-doctor relationships can be heavily influenced by the perceived legitimacy of different forms of medical knowledge and treatments and by culturally influenced ideas regarding health, wellbeing and agency. Despite a desire amongst some migrants to use 'traditional' medicines from southern Africa as well as other non-biomedical treatments and therapies, the research found that the perceived lack of legitimacy associated with these treatments in the UK rendered their use a largely clandestine activity. At the same time, many patients made clear distinctions concerning issues affecting their immediate health and factors influencing their more general wellbeing, which in turn, impacted upon the information that they chose to share with, or conceal from, their doctors. Such findings challenge assumptions underpinning policy promoting patient agency and have significant and, in cases, potentially adverse implications for the safety and effective administration and management of HIV treatments in African migrant populations and possibly more generally. (C) 2009 Elsevier Ltd. All rights reserved

Maintaining places of social inclusion : Ebola and the emergency department

We introduce the concept of places of social inclusion—institutions endowed by a society or a community with material resources, meaning, and values at geographic sites where citizens can access services for specific needs—as taken-for-granted, essential, and inherently precarious. Based on our study of an emergency department that was disrupted by the threat of the Ebola virus in 2014, we develop a process model to explain how a place of social inclusion can be maintained by custodians. We show how these custodians—in our fieldsite, doctors and nurses—experience and engage in institutional work to manage different levels of tension between the value of inclusion and the reality of finite resources, as well as tension between inclusion and the desire for safety. We also demonstrate how the interplay of custodians’ emotions is integral to maintaining the place of social inclusion. The primary contribution of our study is to shine light on places of social inclusion as important institutions in democratic society. We also reveal the theoretical and practical importance of places as institutions, deepen understanding of custodians and custodianship as a form of institutional work, and offer new insight into the dynamic processes that connect emotions and institutional work

Women, men and coronary heart disease: a review of the qualitative literature

Aim. This paper presents a review of the qualitative literature which examines the experiences of patients with coronary heart disease. The paper also assesses whether the experiences of both female and male patients are reflected in the literature and summarizes key themes. Background. Understanding patients' experiences of their illness is important for coronary heart disease prevention and education. Qualitative methods are particularly suited to eliciting patients' detailed understandings and perceptions of illness. As much previous research has been 'gender neutral', this review pays particular attention to gender. Methods. Published papers from 60 qualitative studies were identified for the review through searches in MEDLINE, EMBASE, CINAHL, PREMEDLINE, PsychINFO, Social Sciences Citation Index and Web of Science using keywords related to coronary heart disease. Findings. Early qualitative studies of patients with coronary heart disease were conducted almost exclusively with men, and tended to generalize from 'male' experience to 'human' experience. By the late 1990s this pattern had changed, with the majority of studies including women and many being conducted with solely female samples. However, many studies that include both male and female coronary heart disease patients still do not have a specific gender focus. Key themes in the literature include interpreting symptoms and seeking help, belief about coronary 'candidates' and relationships with health professionals. The influence of social roles is important: many female patients have difficulties reconciling family responsibilities and medical advice, while male patients worry about being absent from work. Conclusions. There is a need for studies that compare the experiences of men and women. There is also an urgent need for work that takes masculinity and gender roles into account when exploring the experiences of men with coronary heart disease

Exploring women’s perspectives of living with mental illness, stigma, and receiving community services

According to the Canadian Mental Health Association (CMHA) (2015), one in five individuals will experience mental illness personally, which means that all Canadians will be indirectly (or directly) influenced by mental illness at some point in their life. Unfortunately, due to historical trends and negative stereotypes mental illness has become heavily stigmatized (Camp, Finlay, and Lyons, 2002; Chernomas, Clarke, and Chisholm, 2000; Link, Struening, Neese-Todd, Asmussen, and Phelan, 2001; Sands, 2009; Szeto, Luong & Dobson, 2013). Although many studies have assessed the relationship between mental illness and stigma, little research has included a gender lens when exploring these topics. Therefore, the primary research objective of the current study is to explore women’s perspectives of living with mental illness, stigma, and receiving community services. In total, five women from the Kitchener, Waterloo, and Cambridge area participated in the study. Similar to the literature, results found that the women experienced feelings of loneliness and sadness due to their mental illness diagnosis and the stigma they experienced from friends, family, and service staff. Some women talked about being relieved to have a label or diagnosis for their illness, however, the majority of their narratives suggested that living with a mental illness is difficult due to the internal and external stigma they experience. Findings from this study have implications for contributing to the field of social work, improving service delivery within various healthcare facilities, and future research

Do health systems delay the treatment of poor children? A qualitative study of child deaths in rural Tanzania.

Child mortality remains one of the major public-health problems in Tanzania. Delays in receiving and accessing adequate care contribute to these high rates. The literature on public health often focuses on the role of mothers in delaying treatment, suggesting that they contact the health system too late and that they prefer to treat their children at home, a perspective often echoed by health workers. Using the three-delay methodology, this study focus on the third phase of the model, exploring the delays experienced in receiving adequate care when mothers with a sick child contact a health-care facility. The overall objective is to analyse specific structural factors embedded in everyday practices at health facilities in a district in Tanzania which cause delays in the treatment of poor children and to discuss possible changes to institutions and social technologies. The study is based on qualitative fieldwork, including in-depth interviews with sixteen mothers who have lost a child, case studies in which patients were followed through the health system, and observations of more than a hundred consultations at all three levels of the health-care system. Data analysis took the form of thematic analysis. Focusing on the third phase of the three-delay model, four main obstacles have been identified: confusions over payment, inadequate referral systems, the inefficient organization of health services and the culture of communication. These impediments strike the poorest segment of the mothers particularly hard. It is argued that these delaying factors function as 'technologies of social exclusion', as they are embedded in the everyday practices of the health facilities in systematic ways. The interviews, case studies and observations show that it is especially families with low social and cultural capital that experience delays after having contacted the health-care system. Reductions of the various types of uncertainty concerning payment, improved referral practices and improved communication between health staff and patients would reduce some of the delays within health facilities, which might feedback positively into the other two phases of delay