<p> This dissertation examines my investigation of the experiences of participants of university-based health research. My primary research questions were: (1) Why do people participate in health research, despite its risks? (2) Why are people asked to participate in health research? (3) What factors influence local research environments? I employed a critical-interpretive medical anthropology framework to investigate and describe three studies: a Phase 2a asthma drug study, a Phase 1 oncology drug study, and a muscle regeneration study. I followed each of these studies, conducting hundreds of hours of participant observation and interviewing 31 participants multiple times during the course of their enrolment. To learn about the organization and governance of university-based health research I also interviewed researchers, research coordinators, and ethics experts. In addition, I conducted participant observation at three different research ethics boards (REBs) and two industry conferences. Participant enrolment was significantly influenced by: belief in the "good" of medical research, the enjoyment they experienced as former participants, and desire to receive benefit, including remuneration and possible health benefits. Participation often entails long hours, and much of this time is spent socializing with the research team. Participants often develop trusting relationships with the research team, and learn to adopt its scientific language, in addition to its interests and perspectives. Thus, participants rarely question how research is funded and who ultimately benefits from research. They also do not identify as participants, but rather as volunteers or guests. This is a significant obstacle for participant organization. Since they are not organized to voice their interests collectively, REBs are responsible for protecting their interests. Research ethics board focus almost exclusively on reducing risk and rarely address increasing the potential benefit of researcher to the participants. I conclude my analysis with recommendations for REBs, policy makers, and researchers.</p> / Thesis / Doctor of Philosophy (PhD)

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<p>This thesis reports results from my PhD research investigating experiences of aging and dementia among First Nations seniors on Manitoulin Island, Ontario. Dementia has been identified as a growing problem in Aboriginal communities by researchers and Aboriginal stakeholders. However, little research has documented First Nations peoples’ explanatory models of dementia or aging. In this thesis I explore Manitoulin Island First Nations people’s knowledge, attitudes, beliefs and behaviours related to healthy aging and dementia. I present data that documents explanatory models of successful aging and dementia, issues surrounding help-seeking and treatment, and practices relating to care-giving. This research uses an ethnographic approach following a community-based participatory action research design. In-depth, semi-structured interviews were carried out with seniors, people with dementia, informal family caregivers, health care providers, and traditional healers in seven First Nations communities on Manitoulin Island. Focus groups were carried out with nurses and personal support workers. A total of 59 participants were involved in this research. Participant observation was used to enrich interview data. A hermeneutic phenomenological approach was used to interpret participants’ lived experiences of aging and dementia. This research demonstrates that First Nations seniors strive to remain healthy and engaged in life as they age. However, it also demonstrates that dementia is a growing problem in First Nations communities. Although First Nations people are generally accepting of memory loss in old age as a natural occurrence, a conflicting perception of dementia as pathological was also present. This research demonstrates that changes to culture and ways of life are perceived to have a significant impact on First Nations peoples’ ability to age successfully and on the emergence of dementia as a growing health concern. I conclude that improving access to culturally safe supports and services is needed to ensure that people can better cope with the challenges of aging and dementia.</p> / Doctor of Philosophy (PhD)

This paper focuses on what people in Saga, a village on the periphery of Niamey, the capital of Niger, do in the face of illness. With limited economic assets and in a context of medical pluralism, to which therapeutic alternatives do they turn? And what factors are determinant in the choice that they make? Saga is an old village, which has become increasingly integrated into the expanding urban community of Niamey. It can be described as a semi-urban area in which elements of both rural and urban Niger are present. The therapeutic field in Saga is, as in all of Niger, characterised by medical pluralism. A number of therapeutic alternatives exist side by side. They range from ‘western’ or hospital medicine provided by the local public dispensary, the private confessional dispensary and by the unlicensed sale of medicine by ambulant vendors to ‘traditional’ treatments, such as Islamic medicine practised by marabouts and ‘traditional’ healing using herbal remedies and spirit possession rituals. This paper is about the various institutions and actors of ‘modern’ medicine in Saga, namely on the public dispensary, on the confessional dispensary and on the informal sale of pharmaceuticals. To better understand the quest for therapy in Saga this paper focuses on everyday practices of therapy seeking, on the actual and everyday choices people make in the face of illness.Special attention is paid to the therapeutic alternatives and to the relation between therapy seeker and therapy provider in what may be called the therapeutic encounter. It is argued that socio-economic factors as well as social relations, personal experiences and perceptions of trust are central to the therapeutic recourse taken. Furthermore, it is suggested that the ‘quest for therapy’ can and should be seen as a ‘quest for relief’.

Throughout the existence of the United States there have been multiple ways to seek healthcare insurance, and healthcare services and treatment. As the country developed a system in which healthcare was distributed was created. As such, this system has created societal divisions and has caused certain people to be excluded from gaining access to healthcare insurance and treatment. From these divisions, certain stigmas and stereotypes have been created about the type of person that does not have access to healthcare. With certain historical reforms in the U.S. healthcare system being currently implemented, the healthcare system is to change dramatically. However, certain people are still being excluded from gaining access to healthcare insurance and healthcare services. The following thesis, based on research which was conducted from April to July 2014 in the Brooklyn borough of New York City, explores the manner in which recent developments and changes within the healthcare system of the United States inhibits the city’s residents from obtaining basic health care. By focusing on medical encounters, this thesis focuses on how agencies of power retain control of the body, and those that seek access to healthcare. This thesis also explores the opinion of the uninsured patients by those who volunteer at The Coalition of Concerned Medical Professionals, which is an organization that offers free healthcare services while acting as political advocates.

This dissertation is based on an ethnographic study of Fetal Alcohol Spectrum Disorders (FASD) and the racial, cultural and political considerations that shape the meaning of diagnosis for Alaska Native individuals and families in Anchorage, Alaska. During the period from August 6, 2010 to through August 5, 2011, I worked with foster families and extended natural families living with and supporting individuals diagnosed with FASD. Documenting the experiences of families in their interactions with clinical, state, tribal and non-profit institutions, I sought to understand how a diagnosis of FASD structures opportunities, outcomes and everyday life experiences across several critical life domains, including health, education, employment, kinship and identity. Family narratives and experiences are highlighted to illustrate the ways in which difference is reproduced in everyday public understanding and clinical practice.

Lady Health Workers (LHWs) are community health workers who work under the Pakistani government’s National Programme for Family Planning and Primary Health Care, and provide basic medication, contraceptives, and nutrition and prenatal advice to expectant mothers. LHWs are a pivotal bridge between mothers, especially those who live in traditional households, and medical practitioners and policymakers. Several studies indicate that LHWs have been instrumental in decreasing maternal and infant mortality rates, lowering the incidence of tuberculosis in urban and rural populations, and treating depression among patients. In addition, they conduct vaccination campaigns including the WHO-supervised polio campaign. Since 2007 tensions have emerged between LHWs and the government regarding pay and working conditions. The LHWs have staged sit-ins, demonstrations as well as a march to the capital to highlight their plight and demand better working conditions from the government. This has resulted in disruptions in vaccination and awareness campaigns. Reports suggest that a higher morale amongst workers translates to higher productivity and more effective work results. Thus, understanding the issues affecting LHWs is essential to a more productive health care work force. By analyzing the dynamics underpinning the relationship between LHWs, the Pakistani government, and the community, policymakers can obtain a better understanding of how the intersecting influences of gender, culture and spaces impact the implementation of health care policies. This analysis could also shed light on the issue of worker retention in the medical field. Drawing from a series of semi-structured interviews conducted over a four-month period in the Pakistani city of Karachi, I analyse how LHWs view their work in relation to gender, agency, self-worth and human security in an urban setting. In addition, I locate the workers’ experiences within neocolonial and postcolonial systems. Findings indicate that while LHWs are extremely devoted to their work, a lack of security, compounded by irregular pay and gender discrimination, has contributed to low morale. The masculine and hierarchal systems LHWs operate within have contributed to the workers’ struggle to be recognised professionally. In addition, international development organisations’ agendas and government policies have had unintended and often negative consequences on LHWs’ morale and experiences. / Thesis (Master, Global Development Studies) -- Queen's University, 2013-07-03 16:28:46.91

Beginning May of 2013 and ending in September, I worked with Grace After Fire (Grace), a virtual nonprofit organization that focuses on issues related to female veterans. Grace’s mission is to provide female veterans with the means to gain knowledge, insight and self-renewal. Grace’s mission is accomplished through peer support and resource referral. The aim of my thesis project was to conduct an analysis of Grace’s peer support system, Table Talk: Color Me Camo (Table Talk). Because Table Talk is a fairly new program for Grace, just over a year old, the outreach coordinators were eager to learn: 1) if they were indeed meeting their mission of empowering female veterans, and 2) the point-of-view of the peer facilitators who conduct Table Talk. To help Grace gain perspective, I interviewed women who had previously attended Table Talk, as well as peer facilitators responsible for coordinating the peer support system-all of whom are female veterans. The following is their story.