Discussion 11

Unfortunately, since 1998, little has changed. For many individuals living in impoverished underdeveloped countries, even basic medical care is difficult to obtain. Although international agencies sponsor outreach programs and corporations, and although nonprofit organizations donate goods and services, the level of health care remains far below what is necessary to meet the needs of struggling populations. Polluted water supplies, unsanitary conditions, and poor nutrition only exacerbate the poor health prevalent in these environments. Nurses working in developed nations have many opportunities/advantages that typically are not available to those in underdeveloped countries. What can nurses do to support their international colleagues and advocate for the poor and underserved of the world?

In this Discussion, you will consider the challenges of providing health care for the world’s neediest citizens, as well as how nurses can advocate for these citizens.

Consider the challenges of providing health care in underdeveloped countries.
Conduct research in the Walden Library and other reliable resources to determine strategies being used to address these challenges.
Using this week’s Learning Resources, note the factors that impact the ability of individuals in underdeveloped nations to obtain adequate health care.
Consider strategies nurses can use to advocate for health care at the global level. What can one nurse do to make a difference?
Post a description of at least two challenges related to providing adequate health care in underdeveloped countries. Then, describe two strategies you might use to address those challenges, and explain why. Finally, describe one strategy nurses might use in advocating for health care at the global level, and explain why this would be an effective strategy.
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Towards a common defi nition of global health Jeff rey P Koplan, T Christopher Bond, Michael H Merson, K Srinath Reddy, Mario Henry Rodriguez, Nelson K Sewankambo, Judith N Wasserheit, for the Consortium of Universities for Global Health Executive Board*

Global health is fashionable. It provokes a great deal of media, student, and faculty interest, has driven the establishment or restructuring of several academic programmes, is supported by governments as a crucial component of foreign policy,1 and has become a major philanthropic target. Global health is derived from public health and international health, which, in turn, evolved from hygiene and tropical medicine. However, although frequently referenced, global health is rarely defi ned. When it is, the defi nition varies greatly and is often little more than a rephrasing of a common defi nition of public health or a politically correct updating of international health. Therefore, how should global health be defi ned?

Global health can be thought of as a notion (the current state of global health), an objective (a world of healthy people, a condition of global health), or a mix of scholarship, research, and practice (with many questions, issues, skills, and competencies). The need for a commonly used and accepted defi nition extends beyond semantics. Without an established defi nition, a shorthand term such as global health might obscure important diff erences in philosophy, strategies, and priorities for action between physicians, researchers, funders, the media, and the general public. Perhaps most importantly, if we do not clearly defi ne what we mean by global health, we cannot possibly reach agreement about what we are trying to achieve, the approaches we must take, the skills that are needed, and the ways that we should use resources. In this Viewpoint, we present the reasoning behind the defi nition of global health, as agreed by a panel of multidisciplinary and international colleagues.

Public health in the modern sense emerged in the mid- 19th century in several countries (England, continental Europe, and the USA) as part of both social reform movements and the growth of biological and medical knowledge (especially causation and management of infectious disease).2 Farr, Chadwick, Virchow, Koch, Pasteur, and Shattuck helped to establish the discipline on the basis of four factors: (1) decision making based on data and evidence (vital statistics, surveillance and outbreak investigations, laboratory science); (2) a focus on populations rather than individuals; (3) a goal of social justice and equity; and (4) an emphasis on prevention rather than curative care. All these elements are embedded in most defi nitions of public health.

The defi nition of public health that has perhaps best stood the test of time is that suggested by Winslow almost 90 years ago:3

“Public health is the science and art of preventing disease, prolonging life and promoting physical health and effi cacy through organized community eff orts for the sanitation of the environment, the control of

Lancet 2009; 373: 1993–95

Published Online June 2, 2008 DOI:10.1016/S0140- 6736(09)60332-9

See Editorial page 1919

*Members listed at end of paper

Emory Global Health Institute (Prof J P Koplan MD), and Department of Epidemiology, Rollins School of Public Health (T C Bond PhD), Emory University, Atlanta, GA, USA; Duke Global Health Institute, Duke University, Durham, NC, USA (Prof M H Merson MD); Public Health Foundation of India, Delhi, India (Prof K S Reddy MD); Instituto Nacional de Salud Publica, Cuernavaca, Mexico (Prof M H Rodriguez MD); School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda (Prof N K Sewankambo FRCP); and Department of Global Health, University of Washington, Seattle, WA, USA (Prof J N Wasserheit MD)

Correspondence to: Prof Jeff rey P Koplan, Robert W Woodruff Health Sciences Center, Emory University, 1440 Clifton Road Suite 410, Atlanta, GA 30322, USA jkoplan@emory.edu

communicable infections, the education of the individual in personal hygiene, the organization of medical and nursing services for the early diagnosis and preventive treatment of disease, and the development of social machinery which will ensure every individual in the community a standard of living adequate for the maintenance of health; so organizing these benefi ts in such a fashion as to enable every citizen to realize his birthright and longevity.”

The US Institute of Medicine (IOM), in its 1988 Future of public health report,4 described public health in terms of its mission, substance, and organisational framework, which, in turn, address prevention, a community approach, health as a public good, and the contributions of various partners. The IOM report defi ned the mission of public health as “fulfi lling society’s interest in assuring conditions in which people can be healthy”.4 In the Dictionary of epidemiology (2001), Last5 defi ned public health as “one of the eff orts to protect, promote and restore the people’s health. It is the combination of sciences, skills and beliefs that is directed to the maintenance and improvement of the health of all the people through collective or social actions”.

International health has a more straightforward history. For decades, it was the term used for health work abroad, with a geographic focus on developing countries and often with a content of infectious and tropical diseases, water and sanitation, malnutrition, and maternal and child health.6 Many academic departments and organisations still use this term, but include a broader range of subjects such as chronic diseases, injuries, and health systems. The Global Health Education Consortium defi nes international health as a subspecialty that “relates more to health practices, policies and systems…and stresses more the diff erences between countries than their commonalities”.7 Other research groups defi ne international health as limited exclusively to the diseases of the developing world.8 But many fi nd international health a perfectly usable term and have adapted it to coincide with the philosophy and content of today’s globalised health practice.7,8 International health is defi ned by Merson, Black, and Mills9 as “the application of the principles of public health to problems and challenges that aff ect low and middle-income countries and to the complex array of global and local forces that infl uence them”.

Global health has areas of overlap with the more established disciplines of public health and international health (table). All three entities share the following characteristics: priority on a population-based and preventive focus; concentration on poorer, vulnerable, and underserved populations; multidisciplinary and

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interdisciplinary approaches; emphasis on health as a public good and the importance of systems and structures; and the participation of several stakeholders. In view of these commonalities, we are left with key questions that need to be resolved to arrive at a useful and distinctive defi nition for global health. We address some of these questions here.

What is global? Must a health crisis cross national borders to be deemed a global health issue? We should not restrict global health to health-related issues that literally cross international borders. Rather, in this context, global refers to any health issue that concerns many countries or is aff ected by transnational determinants, such as climate change or urbanisation, or solutions, such as polio eradication. Epidemic infectious diseases such as dengue, infl uenza A (H5N1), and HIV infection are clearly global. But global health should also address tobacco control, micronutrient defi ciencies, obesity, injury prevention, migrant-worker health, and migration of health workers. The global in global health refers to the scope of problems, not their location. Thus—like public health but unlike international health—global health can focus on domestic health disparities as well as cross-border issues. Global health also incorporates the training and distribution of the health-care workforce in a manner that goes beyond the capacity-building interest of public health.

Is global health mainly directed to infectious disease and maternal and child health issues or does it also address issues such as chronic diseases, injuries, mental health, and the environment? Infectious diseases and maternal and child health have dominated international health and continue to receive the most attention and interest in global health. However, global health has to embrace the full breadth of important health threats. This broad set of priorities might mean accepting that, for many countries, the epidemiological transition is a continuing process. Simultaneous eff ort needs to be expended on undernutrition and overnutrition, HIV/ AIDS and tobacco, malaria and mental health, tuberculosis and deaths due to motor vehicle accidents. Infectious agents are communicable and so are parts of the western lifestyle (ie, dietary changes, lack of physical

activity, reliance on automobile transport, smoking, stress, urbanisation). Burden of illness should be used as a criterion for global-health priority setting.

How does global health relate to globalisation? The spread of health risks and diseases across the world, often linked with trade or attempted conquest, is not new to public health or international health. Plague spread across Europe and Asia in the middle ages; quarantine was developed in 14th-century Venice; smallpox and measles were introduced to the New World by European invaders in the 16th century; the same explorers took tobacco from the Americas to Europe and beyond, leading to premature disease and death; and opium was sold to China in the 18th and 19th centuries as a product of trade and subjugation by imperial western powers. Never- theless, the rapid increase in speed of travel and communication, as well as the economic interdependency of all nations, has led to a new level and speed of global interconnectedness or globalisation, which is a force in shaping the health of populations around the world.

Must global health operate only within a context of a goal of social/economic equity? The quest for equity is a fundamental philosophical value for public health. The promotion of social and economic equity, and reduction of health disparities has been a key theme in domestic public health, international health, and global health. Up to now, most health initiatives in countries without suffi cient resources to deal with their own health problems have come about through the assistance of wealthier countries, organisations, and foundations. Although this assistance is understandable, it does not help us to distinguish global health as a specialty of study and practice.

Global health has come to encompass more complex transactions between societies. Such societies recognise that the developed world does not have a monopoly on good ideas and search across cultures for better approaches to the prevention and treatment of common diseases, healthy environments, and more effi cient food production and distribution. The preference for use of the term global health where international health might previously have been used runs parallel to a shift in philosophy and attitude that emphasises the mutuality of

Global health International health Public health

Geographical reach Focuses on issues that directly or indirectly aff ect health but that can transcend national boundaries

Focuses on health issues of countries other than one’s own, especially those of low-income and middle-income

Focuses on issues that aff ect the health of the population of a particular community or country

Level of cooperation Development and implementation of solutions often requires global cooperation

Development and implementation of solutions usually requires binational cooperation

Development and implementation of solutions does not usually require global cooperation

Individuals or populations

Embraces both prevention in populations and clinical care of individuals

Embraces both prevention in populations and clinical care of individuals

Mainly focused on prevention programmes for populations

Access to health Health equity among nations and for all people is a major objective

Seeks to help people of other nations Health equity within a nation or community is a major objective

Range of disciplines Highly interdisciplinary and multidisciplinary within and beyond health sciences

Embraces a few disciplines but has not emphasised multidisciplinarity

Encourages multidisciplinary approaches, particularly within health sciences and with social sciences

Table: Comparison of global, international, and public health

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real partnership, a pooling of experience and knowledge, and a two-way fl ow between developed and developing countries. Global health thus uses the resources, knowledge, and experience of diverse societies to address health challenges throughout the world.

What is the interdisciplinary scope of global health? Professionals from many diverse disciplines wish to contribute to improving global health. Although global health places greater priority on prevention, it also embraces curative, rehabilitative, and other aspects of clinical medicine and the study of basic sciences. But these latter areas are less central to the core elements of public health than are its population-based and preventive orientations. Clearly, many disciplines, such as the social and behavioural sciences, law, economics, history, engineering, biomedical and environmental sciences, and public policy can make great contributions to global health. Thus, global health encompasses prevention, treatment, and care; it is truly an interdisciplinary sphere.

A steady evolution of philosophy, attitude, and practice has led to the increased use of the term global health. Thus, on the basis of this analysis, we off er the following defi nition: global health is an area for study, research, and practice that places a priority on improving health and achieving equity in health for all people worldwide. Global health emphasises transnational health issues, deter- minants, and solutions; involves many disciplines within and beyond the health sciences and promotes inter- disciplinary collaboration; and is a synthesis of population- based prevention with individual-level clinical care.

We call for the adoption of a common defi nition of global health. We will all be best served (and best serve the health of others around the world) if we share a common defi nition of the specialty in which we work and to which we encourage others to lend their eff orts.

Contributors All authors contributed to the writing and editing of the manuscript. The Consortium of Universities for Global Health (CUGH) Executive Board developed the defi nition and reviewed and edited the manuscript.

CUGH Executive Board Haile Debas (University of California, San Francisco, CA, USA); King Holmes (University of Washington, Seattle, WA, USA); Gerald Keusch (Boston University, Boston, MA, USA); Jeff rey Koplan (Emory University, Atlanta, GA, USA); Michael Merson (Duke University, Durham, NC, USA); Thomas Quinn (Johns Hopkins University, Baltimore, MD, USA); Judith N Wasserheit (University of Washington, Seattle, WA, USA).

Confl icts of interest We declare that we have no confl icts of interest.

Acknowledgments We thank George Alleyne, Lincoln Chen, William Foege, Andy Haines, Mohammed Hassar, Venkat Narayan, Sharifa Saif Al-Jabri, Barry Schoub, and Olive Shisana for their comments and suggestions.

References 1 Institute of Medicine. The US commitment to global health:

recommendations for the new administration. Washington, DC: Institute of Medicine, Dec 15, 2008. http://www.iom.edu/ CMS/3783/51303/60714.aspx (accessed Feb 19, 2009).

2 Porter R. The greatest benefi t to mankind: a medical history of humanity. New York: W W Norton & Company, 1997.

3 Winslow C. The untilled fi eld of public health. Mod Med 1920; 2: 183–91.

4 Institute of Medicine. The future of public health. Washington, DC: National Academy Press, 1988.

5 Last J. A dictionary of epidemiology. New York: Oxford, 2001. 6 Brown TM, Cueto M, Fee E. The World Health Organization and

the transition from “international” to “global” public health. Am J Public Health 2006; 96: 62–72.

7 Global Health Education Consortium. Global vs international. http://globalhealthedu.org/Pages/GlobalvsInt.aspx (accessed Feb 19, 2009).

8 Brown University International Health Institute. Welcome to the International Health Institute. http://med.brown.edu/ihi/ (accessed Feb 19, 2009).

9 Merson MH, Black RE, Mills AJ. International public health: diseases, programs, systems, and policies, 2nd edn. Sudbury MA: Jones and Bartlett Publishers, 2006.

Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.

Towards a common definition of global health
Acknowledgments
References
Advances in Nursing Science Issue: Volume 32(2), April/June 2009, p E94-E108 Copyright: (C) 2009 Lippincott Williams & Wilkins, Inc. Publication Type: [Article] DOI: 10.1097/ANS.0b013e3181a3d754 ISSN: 0161-9268 Accession: 00012272-200904000-00017 Keywords: HIV/AIDS, HIV testing and counseling, nursing education, qualitative research, Uganda [Article] The Impact of HIV Education on the Lives of Ugandan Nurses and Nurse-Midwives Harrowing, Jean N. RN, MN Author Information Faculty of Health Sciences, University of Lethbridge, 4401 University Dr W, Lethbridge, Alberta, Canada. Corresponding Author: Jean N. Harrowing, RN, MN, Faculty of Health Sciences, University of Lethbridge, 4401 University Dr W, Lethbridge, AB T1K 3M4, Canada (harrjn@uleth.ca). This work was supported by the Canadian Institutes of Health Research; Faculty of Nursing, University of Alberta; Alberta Registered Nurses Educational Trust; Killam Trusts; and Canadian Nurses Foundation. The author thanks the nurses and nurse-midwives of Uganda; Dr Judy Mill, doctoral supervisor, for her gentle patience and wise counsel; and Dr david Gregory for his helpful comments and encouragement. ———————————————- Outline Abstract BACKGROUND RESEARCH STUDY Purpose METHODS Participants FINDINGS Reconceptualizing the practice of nursing Gaining and sharing power Challenging the image and role of nursing Systemic challenges DISCUSSION LIMITATIONS AND FUTURE RESEARCH CONCLUSION REFERENCES Abstract In this ethnography, I explored the impact of an HIV/AIDS education program on the lives of 24 Ugandan nurses and nurse-midwives. Nurses who previously had viewed themselves simply as providers of advice and sympathy now saw themselves as more holistic, collaborative caregivers. They voiced an increased awareness of their role as leaders and advocates in the community with respect to policy. The education program had positive and synergistic effects on the nurses’ professional practice, communication and problem-solving skills, confidence, and engagement in political and social change activities. ———————————————- IN THE CONTEXT of the devastating HIV/AIDS pandemic in sub-Saharan Africa, nurses and nurse-midwives face overwhelming challenges. Stigma and discrimination,1-4 inadequate knowledge,5 frustration and stress related to heavy workloads,6,7 negative attitudes,8 and lack of access to basic protective supplies combine to render nursing staff vulnerable to infection 9,10 and severely constrained in their attempts to provide competent, safe care. Furthermore, African nurses (the vast majority of whom are women) continue in their caregiving roles outside of the workplace, by offering countless services to family and community members. If the trajectory of the AIDS pandemic is to be reversed, it is essential that the voice and wisdom of nurses be heard and included in the design and implementation of effective prevention, care, and treatment strategies. The purpose of this article is to discuss the impact of a project that provided continuing professional education about HIV and AIDS interventions to nurses and nurse-midwives in a national referral and teaching hospital in Kampala, Uganda. Through a focused ethnographic approach, participants shared the journey of their unanticipated transition to new understandings of nursing, its image, and its practice, as well as the process of individual and collective empowerment over a 2-year period. In addition, they discussed the difficulties of bringing new perspectives, enthusiasm, and ideas to a workplace that did not always welcome innovation. Their words resound in the relative silence of the literature regarding the obstacles that nurses face “on the ground” as they struggle to cope with the HIV pandemic in Africa. BACKGROUND The Republic of Uganda is situated in East Africa and has a population of 28.8 million people.11 Life expectancy at birth is 48 years for men and 51 years for women in a country with an estimated 1 million HIV-infected people.11 More than 900000 Ugandans have died from the disease since the epidemic began 25 years ago.12 Virtually every family has experienced loss because of AIDS, and every healthcare provider has treated countless patients with the illness. Despite evidence of an overall decline in new infections, the number of Ugandans already infected and progressing to AIDS is increasing.13 However, as the demand for health services has increased, there has been a concomitant reduction in the number of available healthcare providers.14,15 As in other African countries, about 20% of Ugandan healthcare workers have already died from AIDS.16 It is critical that strategies be implemented to achieve the universal antiretroviral therapy (ART) coverage that is required to slow the pandemic; yet without interventions to increase the number and capacity of healthcare workers, that goal will be almost impossible to achieve.5,14,17,18 Employment and social conditions are not conducive to good mental or physical health for Ugandan nurses and nurse-midwives. Their workload is staggering: the country recently reported a nurse-population ratio 19 of 6:10000, with 1 to 2 nurses per 100 patients reported in some units of its largest tertiary care facility.16 The health of female nurses is disproportionately affected by HIV, given their frequent exposures to the virus because of their gender and high-risk work environments. Women account for 59% of all those infected with HIV in sub-Saharan Africa 20 and are considered to be particularly vulnerable to infection, as compared with men, for a number of physiological, social, and cultural reasons.21-26 Many customary and statutory laws discriminate against Ugandan women in areas of marriage, divorce, and property rights,27 diminishing further their capacity to protect themselves against the effects of HIV infection. Failure to attend to the many challenges that face African nurses will undoubtedly result in ongoing devastation of the continent by the deadly virus.26,28 RESEARCH STUDY In an effort to enhance the knowledge and skills required to provide nursing care for persons with HIV, funding was obtained in 2005 by the hospital’s senior nursing administrator to allow 25 staff nurses and nurse-midwives (hereafter referred to as nurses) to participate in a 6-month educational program. Provided by The AIDS Support Organisation (TASO) of Uganda,29 the highly regarded counselors’ course comprised 5 modules covering topics such as basic physiology and pathology of HIV and its effects on the body and mind; the HIV testing process; communication, counseling, and health promotion skills; common sexually transmitted infections; contraception and family planning; positive living following the diagnosis of HIV infection; prevention and treatment of the infection; and dealing with specific groups or populations (eg, adolescents, children, adults). Each module was covered in 5 to 10 days of case study, role playing, group assignments and discussion, storytelling, and other interactive strategies. Two 8-week counseling practice components were completed among the classroom modules. Participants were assessed on their clinical performance, case-study reports, and a final examination. Immediately following their successful completion of the program in June 2006, the nurses were invited to enroll in the current study to explore their perceptions of the education’s impact. Purpose The purpose of this study was to investigate aspects of the lives of a group of Ugandan nurses in such a way that social injustices and inequities and power differentials might be identified and analyzed. The following question formed the lens through which this examination occurred: What is the impact of an HIV/AIDS education program on the lives of a group of Ugandan nurses and nurse-midwives? Education is a precious commodity in Uganda, particularly for women, and I anticipated that participants’ narratives around these experiences might reveal and represent patterns of oppression, marginalization, and vulnerability on several different levels. To achieve the research goal, I planned to probe not only the immediate and direct effect of education on the professional practice of nurses, but also to explore possible sequelae in the personal, social, and political lives of the women. For example, I was curious about the effect on the nurses’ understanding of their role as caregivers, advocates, and community members. I wondered about their relationships and interactions with colleagues and supervisors in the workplace and the impact on nurses’ ability to influence decisions and policy that affect care and treatment of clients. Were their perceptions of vulnerability altered because of increased visibility and contact with HIV-infected persons in a country where stigma is a barrier to care and social contact? Did participation in continuing education provoke questions about or enhance awareness of their power to make changes to any aspect of society? Did the healthcare system accommodate any shifts in the nurses’ perceptions or practices? If so, how? There was no intention to evaluate the education program itself; it has been described and evaluated elsewhere.30,31 Rather, the intent was to learn about its relevance and impact from the perspective of those nurses who participated. METHODS The questions that guided the study are the ones that challenge social practices and knowledge and require systematic uncovering and analysis of multiple layers and dimensions. Consequently, I chose to use the critical ethnographic methodology as outlined by Carspecken.32 This approach was chosen to gain understanding, within a defined duration of time, about how the participants interacted with and interpreted the social and political forces that influenced their lives as women, registered nurses and midwives, and community members in a low-income country. Guided by a belief that science is subtly biased in favor of privileged groups, the critical ethnographer endeavors to disrupt commonly held assumptions and reveal underlying operations of power and control.33,34 The 5 stages of the research process described by Carspecken are designed to allow the researcher to study social action and to explore (1) the significance of and (2) the interactions among the subjective experiences of the participants, the locale in which those interactions occur, and the larger system in which the participants are situated. The research study was reviewed and approved by 3 ethical review boards, 1 at a Canadian university and 2 in Uganda. To avoid any perceptions of coercion from the hospital’s nurse administrator, I shared no information with her about any aspect of the research process once it was underway. Written informed consent was obtained from each participant at our initial contact and was reconfirmed at subsequent data collection points. Data were gathered primarily through individual semistructured interviews with participants. In addition, I observed counseling sessions between participants and clients; participants engaged in their regular duties at the work site; and meetings of the participants. An interview guide was developed at the outset of the project and revised over time to reflect themes that began to emerge from the data. Interviews lasted 60 minutes to 100 minutes and were audiotaped with the consent of the participant; extensive notes were taken during and after the interview for 1 person who preferred not to be recorded. Tapes and field notes were transcribed and entered into a qualitative data management software program (NVivo7): thematic coding occurred simultaneously with data collection. I also sought opportunities to engage in and learn about community activities (eg, attending cultural events and church services, traveling on public transportation, learning the local language, reading local newspapers and magazines, and sharing meals in private homes). Rigor was enhanced through the choice of appropriate methodology, frequent consultation and debriefing with experienced qualitative researchers throughout the process, maintenance of detailed field notes and memos, prolonged engagement and persistent observation, and ensuring the concurrent collection and analysis of data.35 As a researcher from a high-income country with only an outsider’s understanding of the culture of Uganda, I was obligated to ensure that the research questions and study design were relevant to and respectful of the participants and indeed the people of the country. Therefore, the study proposal was developed in collaboration with the nurse administrator who initiated the implementation of the education program for the nurses. She was interested in learning about the program’s impact on the nurses in the Ugandan context-a context in which everyone is affected by HIV, working conditions are poor, stigma remains a problem, and there is pressure on nurses to emigrate to other countries where the quality of life is perceived to be better and surplus earnings can be sent home to support destitute family members. Participants All but one of the 25 nurses selected by the nurse administrator for the educational program participated in the research study: 1 nurse was on extended medical leave and was therefore unavailable. Participants included senior nursing staff with 15 to 35 years of experience; many were in management or supervisory positions and were within 10 years of retirement (mandatory at age of 60 years). All were women who represented a cross-section of nursing specialties, including emergency, pediatrics, obstetrics, intensive care, oncology, radiation therapy, public health, education, and outpatient clinics. All of them held diplomas in nursing, 2 had baccalaureate degrees, and 1 was working on a master’s degree. Many were dually trained as midwives, while others had completed various postbasic certificates. Of the 24 participants, 10 were interviewed once, 13 were interviewed a second time, and 1 was interviewed 3 times. Fourteen nurses were observed for 100 hours in their work sites and/or in counseling sessions with clients. Prior to ethical review, I visited Uganda to begin the groundwork for recruitment and data collection. Twelve potential participants were available to meet with me to learn about the proposed study. All of them were deeply honored to have been chosen to attend the education program and were very enthusiastic about the research. Following ethical approval, 3 more site visits were made. The first one began immediately after the TASO program was completed and consisted of 10 weeks of intensive data collection. The second, a year later, lasted 4 weeks, during which preliminary findings were shared and more interviews were conducted. Finally, 12 months after the second, a third trip of a week allowed for general follow-up as well as the sharing of findings with participants. FINDINGS Study participants toiled under conditions that a nurse from a high-income country would find extremely difficult, yet the discussion of such challenges in this article may be a source of discomfort to Ugandan healthcare administrators. Nevertheless, it is important to provide a general sense of the context in which frontline nurses struggled to raise awareness and create momentum for change. Supplies and equipment such as gloves were rationed despite the increased risk of disease transmission and injuries to staff members and patients. Some managers found themselves using storage closets as offices, where a broken gurney might serve as a desk; boxes of syringes and medications were stacked against walls and under furniture; and the nurse occasionally would be greeted in the morning by a flood because of damaged water pipes in the ceiling. Units with 18 beds often admitted 80 or more patients by making use of mats on the floor and with 2 nurses on duty to provide care. Frequent maintenance problems, such as blocked toilets, challenged the hospital’s ability to respond. In 1 unit, nasogastric tubing was creatively adapted for use with a single oxygen tank that was intended to serve all patients in need. Items such as toilet paper and drugs sometimes had to be provided by patients. Family members bathed, dressed, fed, and comforted the patients. Staff members were often unable to get to work on time as the public transportation was limited, expensive, and subject to frequent disruption. Some workers came directly from another job to work a shift at the hospital and often arrived late, fatigued, and hungry. Many care providers, from physicians to porters, worked on a volunteer basis, as there were no employment opportunities: these workers were compensated with a cup of tea. It was under these circumstances that study participants labored to lead, support, and nurture staff and provide quality services to patients and their families, all the while trying to personally sustain the motivation and positive attitude necessary to remain committed to their work. Overall, participants expressed great satisfaction with the content and process of the TASO program. It addressed topics and skills they felt to be essential, although a few areas for improvement were identified; many of the nurses indicated that more emphasis on the counseling of children and adolescents would have been useful. Generally, however, the knowledge and confidence gained and the opportunities to practice and receive feedback on their counseling skills exceeded the nurses’ expectations. The nurses recognized that the TASO educators modeled the behaviors and attitudes they were trying to instill in the learners, who were very impressed with the quality and commitment of their mentors. The nurses were most grateful for the “golden chance” to attend the course, as the cost of tuition prohibited most of them from taking it as private students. Participation in the TASO program had a major impact on the nurses’ lives. They described the effects in their professional practice as well as their personal, political, and social lives. Many initially undertook the education with some hesitation as they were uncertain about the final benefits and anxious about the expectation that they would have to demonstrate their skills. The group members, not all of whom were known to each other at the outset, quickly formed a cohesive collective and began providing support and encouragement to each other. As the weeks went by, participants found themselves gaining interest and seeing new opportunities to put the skills to good use, both in the short term and later in their careers. My conversations with the participants revolved around a theme that focused on a revisioning of their potential as individuals, nurses, and members of a collective struggling within a structured and resource-poor system. They described experiences and awareness that reflected a new understanding of what it meant, or could mean, to be a nurse. They revealed a growing sense of empowerment, which applied both to themselves and to their clients and colleagues. Finally, they recounted their impressions of the changing image of nurses in society and their role in and contribution to that evolution. Threaded throughout their narratives, however, was an intimate awareness of the constraints of the environment. Reconceptualizing the practice of nursing The most obvious impact of the TASO program was the enormous shift it sparked in the way the participants conceptualized nursing practice. As Laura exclaimed, “The thing is when you do counseling, then you start talking the real nursing!!” Trained during the 1970s, their basic nursing programs prepared them as “advisors and sympathizers” and dispensers of instructions and medications. The TASO approach required them to listen with empathy and encourage clients to identify and choose workable solutions for themselves. Although participants reported that prior to the course they had not placed much importance on, or deliberately practiced, therapeutic communication behaviors (eg, attentiveness, open body posture), they consistently demonstrated such skills in my presence. Clients were encouraged to articulate their feelings and thoughts, as well as their ideas about the solutions that would work best for them, while the nurses listened carefully and supported or challenged as required. Grace spoke for many of the participants when she explained how the TASO education enabled her to engage in helping relationships with her clients: If I’m able to listen then I’m able to respect and give the services where this client expects me to do my best for her or him for that matter. It has improved my approaches to my clients; it has given me more room to realize they have their rights. They have their rights that I should respect, they have-they easily come with their own predetermined mind of what they would want to be done. So, it is up to me to see whether this can be done and how I can put it back to them. The nurses found that they were humbled through the experience of engaging in dialogue with clients. Ruth reflected, “With the clients, I seem to understand them more. I seem to understand their conditions in the ward. I see the suffering in there, in them, and compassion in my heart is great.” Lorna gained awareness about the importance of listening without judging: “I’m trying my best to listen this time. And not to judge-to judge the problem before I listen-it’s important not to judge because you never know, anybody can get a problem without knowing.” Paula recognized a new perspective about her own involvement with the client: “I feel it is a privilege if I can help them because you can reduce the complications which might infringe on someone[horizontal ellipsis].With the counseling [the nurse] can change [her] attitude.” Participants reported that the outcomes for clients were far more satisfying for both parties, as the proposed interventions were more likely to be successful if the nurse listened carefully and engaged the client in generating feasible solutions. Furthermore, clients returned more readily for follow-up visits, which allowed the nurses to monitor progress, provide support, and anticipate problems. Paula suggested, “Usually here in Uganda, clients when told to come back, they do because they feel you are a part of them. They have that feeling that you are a part of them, you’ve assisted them here and there.” Evelyn agreed, saying that “they feel I should be their counselor, not anybody else.” Maintaining an ongoing relationship was seen as a beneficial outcome of good counseling skills that enhanced the overall health status of the client. Eunice was convinced that her new ability to facilitate the patients’ comprehension of their health conditions and treatment options resulted in better healing. She felt it was necessary for the individual to trust that problems could be overcome before symptom relief could occur. She credited the counseling training for her new awareness of the mind-body connection and its role in health maintenance. Jane concurred, and added that: This training has helped us to remove stigma from these patients who have HIV/AIDS. Perhaps when we are handling them, we handle them like any other patient, unlike these nurses who have not trained in HIV who will even fear them, they would not wish to touch them, you see? But for us they are like any other patient. We go and sit with them, we talk to them so they feel they are part of us. You see? So they heal very fast. Evelyn felt that an important part of her role as counselor was to help people find hope, to understand that with appropriate treatment they could live well. Anne noted the value of asking open-ended questions that would allow “the story [to] flow out better.” In this way, she could validate the patient’s experiences while learning the information that would improve clinical care. All the nurses commented on their renewed understanding of the fundamental importance of patience, empathy, and confidentiality in the counseling process. Angela confirmed that: Now I have to listen and hear from what the client tells me and then build out from what he has told me. I don’t give instructions to them but we just talk and we give them options[horizontal ellipsis].And it has also helped me in confidentiality. Much as we are supposed to keep confidentiality as nurses, I did not value it so much at the time, but right now I value it[horizontal ellipsis].It is not our duty to disclose, just educate and talk to the person and keep that confidentiality. Observations made at the outset of the study of the nurses’ counseling interventions with clients revealed their clear but limited focus on HIV and its diagnosis, treatment, and prevention. These interactions tended to be formal and structured and usually took place in a vacant office or room in the workplace setting. A year later, the nurses’ activities had expanded significantly to include individual and group counseling with all age groups. The nurses recounted casual and spontaneous sessions in a variety of settings regarding such concerns as palliative care, grief, substance abuse, marital issues, parent-child relationships, suicide risk, infertility, and sexuality. The nurses were pleased to observe that their efforts to facilitate problem-solving strategies with a client were often rewarded by requests for counseling from other individuals who had been referred by the index client. The nurses viewed this outcome as validation of their genuine interest in and commitment to providing excellent services, as well as a useful approach to improving the health of families and communities. They were not concerned that they had limited or no formal education in some of the specific issues raised by clients; rather, they felt that the process of listening, supporting, and encouraging was their primary role. In addition, the participants pointed out that there were scarce or no resources for the clients, so, anything they could provide was likely better than nothing. Another aspect of practice that was influenced by the newly acquired communication and facilitation skills concerned the nurses’ leadership and management abilities. Prior to the TASO education, nurses who had supervisory responsibilities often referred staff members with personal or workplace problems to more senior administrators. During the year following the program, Anne found that as the manager of a nursing unit: “I can handle the staff now more than I used to handle, too. I used to transfer the responsibility to others. Now I don’t.” Sandra agreed, noting that she made a greater effort to understand the staff member’s perspective before reaching conclusions. She also considered a range of possible alternatives for conflict resolution: “The options, I make use of them such that our relationship in the ward with my staff has improved a great deal.” Wallis aspired to lead her colleagues to a holistic approach to nursing that she called “ideal nursing-really caring for the patient all around.” The participants expressed a heightened sense of satisfaction, pride, autonomy, and confidence as they acknowledged their new capabilities to empower their colleagues. Gaining and sharing power In describing the challenges that face Ugandan nurses, participants indicated that their ability to affect significant changes in the healthcare system was negligible, despite recognition of their own expertise and the enhancements that could be made. Several participants described attempts to raise and resolve issues, only to receive responses perceived to be unjust or negative (eg, being overlooked for promotion or being transferred to a less-appealing work assignment). Submission of reports that outlined dismal conditions or proposals that suggested improvements seldom achieved their goals. Discrimination on the basis of tribal background was reported to be a common phenomenon both within and without the institution. Participants agreed that they had limited capacity to alter the forces that shaped the patient care environment and drove healthcare practices. Interestingly, participants’ completion of the TASO program segued into a growing awareness of a subtle change in their power and status. The simple fact of their selection for the program and their partial release from usual duties marked them as members of a unique group. The increasing frequency of requests from staff members and colleagues to teach new skills and knowledge contributed to their status. Their participation in my research project aroused curiosity, and being sought out by clients made them the object of attention. Such acknowledgment strengthened the participants’ sense that they had something worthwhile to contribute. More important to the participants than status, however, was a perception of an enhanced capacity to empower themselves and others. They realized that their new skills and knowledge offered an avenue to greater financial security and improved job opportunities. They began to speculate about the potential of their group to collectively lobby for primary healthcare initiatives that would directly impact the health of their communities and improve sustainability of services. The participants found that incorporation of the TASO principles into their counseling practice resulted in the empowerment of clients who were then able to assume greater responsibility for their own health concerns. To the nurses, this was initially a foreign and uncomfortable experience as it meant relinquishing a degree of control. As soon as they recognized the benefits for clients, however, the participants’ apprehension changed to a sense of pride and accomplishment as they acknowledged their contributions to clients’ improved well-being. At the personal level, the nurses found that the TASO education led to new ways of communicating with their own families. They found that a solid knowledge base and improved communication skills enabled them to talk about sensitive issues with their children and partners in a more effective way. Lorna observed: “They are very happy, my kids[horizontal ellipsis] they feel Mummy can also do something and when you talk to them they seem to think that maybe I understand more since that training.” When recounting her new, gentler approach with her offspring, Evelyn compared it to her previous strategy this way: “Before I sort of used force, which I don’t do now.” Jane described joking with an extended family member who wanted to come and live with her, telling her: “All those who stay with me, I always test them.” To her surprise, the young woman indicated that she wanted to be tested and to initiate treatment if it was indicated. This response emboldened Jane to raise the subject with other family members, who often disclosed their worries and lack of information. Jane appreciated the opportunity to provide support and direction to her family, although like all the nurses, she was careful to refer family members to other counselors to ensure confidentiality and objectivity. Those participants who had been reluctant to be tested for HIV were challenged to reconsider their decisions. A number of them had not been tested yet or had been tested but had never returned for the results. Following the counseling education, many of those nurses believed that they could no longer work to convince clients to know their status if they themselves refused to go through the same process. As Evelyn said, after learning her test results, “So, I felt very good and that stigma in me also went out.” The nurses were amazed to notice their own improved physical and spiritual health because of learning and applying the principles of counseling to their own personal situations. Ruth commented that: Even when I face difficulties at home or at my place of work, I tend to counsel myself that it will pass[horizontal ellipsis].I could get headaches and I think that was stress. You know, stress, too much stress. I don’t now-once in a while, once in a while. Yes, it helped me physically. She went on to say that counseling helped her to grow spiritually: Now that you become a patient person, I think those are the things that the spirit of God can teach you. Yeah, you become patient, you’re enduring the time of the suffering, and you know that it will-they don’t stay there forever. And the fact that even if a problem is there, you don’t have to put yourself inside it. From a pragmatic perspective, the nurses saw their new skills as an important career opportunity. With mandatory retirement looming for most of them, and in the absence of government pension plans, they all faced the problem of financial security for themselves and their families once they were required to leave their current employment. With a credential that was recognized and respected by private and nongovernmental organizations and knowledge and skills that were in high demand, the nurses viewed their futures with much greater confidence. Although barriers to prevention interventions were easily identified, participants consistently assessed and worked with the assets of their target populations. For example, mothers were often found to be very interested in and committed to learning how to protect their children from HIV infection. The nurses took the opportunity, when responding to these women, to determine the possibility of engaging their sexual partners in discussions about HIV prevention and treatment. If the men declined the invitation to address these issues, the nurses ensured that the women were aware of approaches they could take to enhance their own safety and that of their children. Women were also counseled extensively about income-generating activities in which they might become involved should they find themselves solely responsible for providing for the family. Referrals were often made to the International Federation of Women Lawyers, where women were able to access legal services for little or no cost. Following completion of the TASO program, participants formed a Nurse Counselors Association to maintain contact with one another, promote volunteer community service and research projects, collect evidence about the work they were doing and its impact, and facilitate ongoing professional development. The group scheduled monthly meetings, elected an executive, and collected membership fees. The nurses felt that it was essential to provide ongoing support to one another as they encountered challenges while practicing their new skills. They also took the opportunity to celebrate their triumphs and successes. The nurses recognized the need to monitor and describe the impact of their work on the health of the community. They felt that it was important to promote more widespread education of nurses in counseling skills. Furthermore, they believed that they had the ability to influence other organizations concerned with nursing issues, such as the national nursing association and the professional registration and licensing council. There was a perception that the nursing voice in Uganda was fragmented, but that collectively, the profession could create an agenda that would enable it to advocate for change at the policy level thereby improving the healthcare system’s capacity to accommodate the needs of the population. Challenging the image and role of nursing Participants expressed great concern about the public perception of nurses. Virtually all agreed that they are often regarded as rude and uncaring by members of the public. They attributed this opinion in large part to fatigue brought on by the overwhelming workload that prevented nurses from offering holistic individualized care to each and every client. In addition, the hospital is a tertiary care center at which people often arrived in advanced stages of illness or disease, and often there was little that could be done. The nurses, as frontline workers, found that they often took the brunt of the anger, confusion, and distress experienced by distraught family members. If a midwife was the only healthcare provider present at the moment when a woman died in childbirth, she was likely to be the one who witnessed the family’s emotional response. Participants were quite distressed by the low regard with which they were viewed but were uncertain about what could be done to improve it, given the constraints of the healthcare system. However, as participants grew into their new roles as caring counselors, they began to see their newly framed relationships with clients as an important step toward improving their image in the minds of the public. They found that when they took the time to hear concerns, they were able to engage with the client and family to provide more sensitive care, and the clients responded more positively. According to Jackie, the resulting partnership between nurse and client “gives the clients more room to draw closer to the health workers.” By enabling the clients to participate in the decision-making process, the nurses found that the clients were grateful and freely expressed their appreciation. This, in turn, enhanced the satisfaction and pride the nurses felt about their work. Outside their work lives, the nurses discovered that their capacity for contributing to the well-being of their communities was greatly enhanced by their awareness of new approaches to health promotion and illness prevention. Although most of the nurses had limited professional experience outside the hospital environment, one of their course assignments necessitated that they work with clients in the community. Through witnessing the daily realities of a client’s life, the nurses were better able to understand their role as supporter and facilitator. It became clear to them that involving the client in developing realistic and appropriate strategies for better health often resulted in greater success and satisfaction for the client. In contrast to the lack of respect and autonomy the nurses experienced in the workplace, they found that their expertise was much sought after in the neighborhoods and social settings that comprised their daily lives. Whether they were visiting extended family in the remote villages of their childhood, attending continuing education courses, or walking home after a day’s work, they were often stopped and asked for information or advice. The nurses welcomed such encounters and went to great lengths to satisfy the needs of the inquirers. Grace described how she often found herself interacting with people she met in the community: At times I may just be in a taxi, because for us here in our country our people tend to talk at times about their problems loudly, so I easily find myself having time to allay their anxiety[horizontal ellipsis].At times one would have given me a lift and then since they feel I’m a nurse by profession, I’m working in [hospital] which is an international referral hospital, they always consult me here and there. The nurses provided many more examples of spontaneous counseling, education, or advocacy sessions that occurred in the marketplace, at their children’s school, or on the veranda in the evening. As Evelyn commented, “You know we health educators don’t stop!!” Collectively, the nurses expressed a sense of deep satisfaction in their ability to contribute to the well-being of their communities and did not view their interactions with neighbors as intrusive or burdensome. Systemic challenges Although the educational experience was universally regarded as a very positive one, participants described a number of systemic barriers and the consequent personal costs. Workloads were chronically taxing and resources scarce. To make time for counseling, participants either worked beyond their scheduled shifts or they delegated their usual responsibilities to colleagues. As salaried employees, participants’ overtime hours were not compensated financially. Recruiting clients for counseling was not always easy. Participants felt that some hospital departments were reluctant to refer clients to them, so effort had to be expended to seek people in need of counseling. Participants were sensitive to the potential for clients to fall through the cracks of the system because of being expected to move from site to site on the immense hospital campus to attend various clinics and laboratories to which they were referred. Participants who worked in areas where HIV-testing services were unavailable were uncomfortable asking clients to present for counseling, only to be sent off for testing with the expectation that they wait for results and then return for posttest counseling. Participants, at some inconvenience to themselves, often went to other departments in the hospital where testing services were more readily accessible to ease the process for clients. Private space for counseling was usually at a premium; when it was found, it was often in high demand by other practitioners, so sessions were frequently interrupted. Participants expressed the frustration that often accompanied their lack of success in advocating for basic and essential resources for clients and staff members. They were convinced that patient care and staff retention would be enhanced by small incentives such as provision of meals and basic drugs for patients and a transportation allowance for staff. Despite the efforts of the participants to have their concerns and proposals considered as urgent priorities, they felt that their appeals fell on deaf ears at the senior administrative level. They noted the relative luxury with which private patients were accommodated on the quiet and well-appointed upper floor of the facility and questioned why patients on the lower floors, who were financially destitute, received minimal care. Participants were distressed at this inequity but believed that there was little they could do to effect change in what they viewed as the corrupt practices of the bureaucrats and politicians who could afford to purchase special services. DISCUSSION The findings of this study are significant on 2 levels. Not only did the TASO program have a direct and positive influence on the day-to-day professional practice of the participants, but it also served as a powerful inspiration for their new perspectives, awareness, and understanding of nursing and healthcare in Uganda. Participants’ descriptions of the challenges of their work illuminated the inequities, injustices, and power differentials that infuse the daily lives of nurses, thus providing us a picture of the complex interplay of forces that perpetuate the oppression of female healthcare providers in the context of the AIDS pandemic. Many authors have described the obstacles faced by nurses and other healthcare providers in sub-Saharan Africa as they try to cope with the HIV pandemic on that continent.5,25,36 Using education to enhance the competence of the nurses in this study to deliver more effective care addressed some of these challenges. Indeed, the findings of this study provided additional evidence that expanding the professional skills of care providers contributes to the implementation of innovative and useful interventions. In their articulation of the impact of the educational program, participants described an unanticipated renewal of their passion for nursing. The course stimulated a remarkable revisioning of the possibilities and potential that might be created and enacted by nurses on behalf of themselves and their patients, families, and communities. The nurses’ assessment of the impact of the TASO program on all aspects of their lives was overwhelmingly positive. Their comments regarding the high standard of the program and its instructors are congruent with those found in the literature and heard from other practitioners and clients. Not only did the participants acquire new knowledge and skills, but they also gained confidence in their capacity to improve client care as well as insight into their ability to influence the healthcare system. The positive changes they observed in their practice and in their personal lives renewed their hope and motivation to continue to face the challenges inherent in their daily existence. The participants’ observations that they were poorly viewed by some members of society are well supported in the literature.37-39 Marchal and colleagues 36 noted that healthcare providers’ negative attitudes and inadequate knowledge combined to increase reluctance to offer quality care to people with HIV. At the same time, lack of public respect for the profession renders a career in healthcare professions less appealing to potential candidates, further reducing the capacity of the system to recruit and retain staff. The participants believed that the public’s perception of them would be favorably improved by their new ability to form relationships, communicate effectively, and provide more holistic care. There is an important, reciprocal relationship between feeling respected and the quality of client care nurses deliver 40; the nurses in this study were empowered by their ability to earn respect from clients who appreciated and benefited from their interventions. Furthermore, the participants were often invited by colleagues to provide instruction and mentorship in their own efforts to learn more about HIV care. The growing acknowledgement by participants of their role in the shaping of perceptions about nursing practice and scope and their insights into the advantages and benefits of their new skills and attitudes were important steps toward the creation of positive changes on behalf of all nurses and healthcare providers. It will be critical to sustain the momentum, however, by providing ongoing support to these nurses and by extending similar opportunities to their colleagues. A recent report concluded that the failure of American HIV care providers to offer prevention counseling to their HIV-positive clients could be attributed to the perceived potential of such interventions to harm the client-provider relationship.41 In contrast, the Ugandan nurses were confident that they could successfully address sensitive topics without jeopardizing the therapeutic relationship. It may be that the credibility of the counselors was enhanced by their demonstration of commitment and dedication in a context characterized by increasing societal tolerance of open discussion on the topic of HIV. Study participants were frequently observed raising such topics as sexuality and sexual practices, use of contraception, and effective communication techniques with people of all ages without embarrassment or self-consciousness, and the messages appeared to be received in the same manner. Indeed, such topics were often discussed casually with me by individuals on the street, by taxi drivers, and by university students. People seemed genuinely interested in learning all they could about the topic, and nurses were viewed as informed and trustworthy. The participants began to see themselves as potential change agents-as a collective, they felt they had some power to influence administration and policy. There is a wide discrepancy between macro factors, such as workplace policies, involvement in decision-making roles and gender-based roles, and the capacity of nurses and their leaders to influence those factors. Despite the constraints on their ability to engage in such activities, there are many reasons to aggressively promote the participation of nurses in leadership roles that will further the healthcare agenda.38 According to Ehlers,42 nurses must engage in political debate to ensure that clients receive the care their conditions warrant and that the nurses themselves receive the benefits to which they are entitled. Participants in this study were in the initial stages of discussing possible approaches and strategies within the Nurse Counselors Association. Some had already submitted reports to senior management that they hoped would stimulate further discussion, and others were seeking connections with nurses on the national regulatory Board in anticipation of opening talks at that level. Another participant and I developed and submitted to potential funders a small research proposal that reflected the groups’ belief that community interventions were essential to effect change in the pandemic. The nurses’ primary recommendation was that funding be sought to enable all nurses to complete the TASO program, as each participant firmly believed that all healthcare practitioners should receive this education. Indeed, the nurses developed and submitted to senior administration a funding proposal to support a Train the Trainer initiative in which they themselves would learn to provide the counselors’ course; however, no response has been received to date. Furthermore, the nurses agreed that TASO education or its equivalent should be a component of the basic curriculum for every nurse. They voiced the opinion that a novice practitioner’s ability to practice competently could be greatly enhanced by the program. Indeed, as has been demonstrated in this study, the effects of the education were far-reaching and significant. The nurses recognized that the ripple initiated by their increased capacity to provide better care could potentially influence the healthcare system. The nurses were excited and motivated to be part of what they anticipated would be positive change for themselves, their clients, and the country as a whole. It is significant that the nurses acknowledged that it was the process of participating in this research study that led them to the realization that they could aspire to greater influence over their practice through political action. One of the participants had recently been hired as a research assistant for a large international study led by Edwards,43 and her colleagues were anxious to learn about and become involved in the project. The findings of this study are important because little research has been conducted to determine the value or impact of education on the ability of nurses to effect change in the delivery of healthcare to people with HIV in developing or low-income countries. Williams and colleagues 44 described the importance of comprehensive HIV education for nurses in China to change not only their knowledge level about the disease, but also their attitude toward caring for people with the virus. Nurses in Ghana believed that a program to educate members of the profession about HIV counseling would be beneficial in overcoming the stigma associated with HIV testing and treatment.4 My findings support the usefulness of an intensive program for addressing the affective, emotional, and cognitive domains of learning, resulting in new perspectives about many aspects of nursing and healthcare. LIMITATIONS AND FUTURE RESEARCH The findings from this qualitative study are limited by the fact that a small, relatively homogeneous group of nurses working in a particular institution comprised the participants. The assumptions that guided the nurse administrator’s selection of candidates for the education program may have been inaccurate or inappropriate and therefore may have influenced any or all phases of the research process. In addition, the nurses experienced only one specific format and curriculum designed to enhance their knowledge and skills. Furthermore, the perspectives of clients and the nurses’ coworkers might have contributed additional dimensions to the data. Future research efforts might focus on nurses in different settings, such as clinic, smaller hospital, community, or rural locations. Should funding be found to present a Train the Trainer program, it would be of great interest to investigate the outcomes. Opportunities might be found to explore the progress of the participants in this study regarding their involvement at the systems level. CONCLUSION The extent to which nurses are prepared and enabled to work to full capacity will largely determine a country’s ability to effectively cope with the HIV crisis. The initiative of a nurse administrator in Uganda to promote such an opportunity resulted in a transformative outcome for the nurses involved. Beyond the simple acquisition of new knowledge and skills, the nurses gained confidence and vision. They began the TASO program as a collection of disillusioned and uncertain individuals who held out little hope of changing the trajectory of the AIDS pandemic in Uganda. They emerged as a team of collaborative and empowered healthcare professionals who believed in their ability to influence not only clients, but also organizations and the healthcare system itself. 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Intelligent nursing: accounting for knowledge as action in practice. Nurs Philos. 2006;7(4):247-256. *Participants chose or were assigned pseudonyms. Key words: HIV/AIDS; HIV testing and counseling; nursing education; qualitative research; Uganda
RESEARCH ARTICLE Open Access

Barriers to primary care responsiveness to poverty as a risk factor for health Gary Bloch1,2*†, Linda Rozmovits3† and Broden Giambrone4

Abstract

Background: Poverty is widely recognized as a major determinant of poor health, and this link has been extensively studied and verified. Despite the strong evidentiary link, little work has been done to determine what primary care health providers can do to address their patients’ income as a risk to their health. This qualitative study explores the barriers to primary care responsiveness to poverty as a health issue in a well-resourced jurisdiction with near-universal health care insurance coverage.

Methods: One to one interviews were conducted with twelve experts on poverty and health in primary care in Ontario, Canada. Participants included family physicians, specialist physicians, nurse practitioners, community workers, advocates, policy experts and researchers. The interviews were analysed for anticipated and emergent themes.

Results: This study reveals provider- and patient-centred structural, attitudinal, and knowledge-based barriers to addressing poverty as a risk to health. While many of its findings reinforce previous work in this area, this study’s findings point to a number of areas front line primary care providers could target to address their patients’ poverty. These include a lack of provider understanding of the lived reality of poverty, leading to a failure to collect adequate data about patients’ social circumstances, and to the development of inappropriate care plans. Participants also pointed to prejudicial attitudes among providers, a failure of primary care disciplines to incorporate approaches to poverty as a standard of care, and a lack of knowledge of concrete steps providers can take to address patients’ poverty.

Conclusions: While this study reinforces, in a well-resourced jurisdiction such as Ontario, the previously reported existence of significant barriers to addressing income as a health issue within primary care, the findings point to the possibility of front line primary care providers taking direct steps to address the health risks posed by poverty. The consistent direction and replicability of these findings point to a refocusing of the research agenda toward an examination of interventions to decrease the health impacts of poverty.

Background Poverty is widely recognized as a major determinant of poor health [1-3]. The powerful link between income and health has been well documented – people living on low income consistently have higher rates of morbid- ity and mortality due to chronic and acute illnesses [4-7]. This impact is particularly worrisome amongst children, who exhibit a higher risk of detrimental health outcomes throughout their life-course regardless of later

socioeconomic status [8]. Nonetheless, there are few stu- dies of how family physicians respond to the social pro- blems, such as poverty, inadequate housing, or food insecurity, experienced by their patients [9]. This gap may partly be due to the fact that research into the social determinants of health has largely been focused on policy-level and public health-based interventions. Very little has been done to directly examine primary health care providers’ responsiveness to income as a risk factor for health. Moreover, while family medicine has a strong history of addressing issues once considered social, such as smoking and obesity, income remains lar- gely unaddressed in primary care. As a step towards the development of potential direct interventions by primary

* Correspondence: gary.bloch@utoronto.ca † Contributed equally 1Department of Family and Community Medicine, St. Michael’s Hospital, 80 Bond St., Toronto, Ontario, M5B 1X2, Canada Full list of author information is available at the end of the article

Bloch et al. BMC Family Practice 2011, 12:62 http://www.biomedcentral.com/1471-2296/12/62

© 2011 Bloch et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

mailto:gary.bloch@utoronto.ca
http://creativecommons.org/licenses/by/2.0
care providers, this study examines some of the current barriers to effectively addressing poverty as a risk to health in the province of Ontario, Canada. There is a nuanced literature discussing access to health

care for different populations [10], however access to care for people who live at low income has been less well- explored. Existing evidence points to significant barriers to people living on low income receiving high quality primary care that is responsive to their social circumstances. There have been reports of inequity in access to primary care physicians in Canada based on income [11], although this may be less than previously thought [12]. People living in poverty also face a range of practical barriers to accessing primary care. For example, lack of access to transportation [13], not having a valid health insurance card [14,15], and difficulty making and keeping appointments are com- monly cited [16]. Inflexible practice rules and billing struc- tures that make it disadvantageous for family physicians to serve patients with complex care needs have also been identified [17]. Beyond barriers to access, the quality of interactions

between family physicians and people living in poverty is more complex than simple utilization rates suggest. When patients living in poverty access health services, they are more likely to have shorter consultation times than their wealthier peers [18], and are less likely to be involved in treatment decisions [19]. Moreover, despite their complex care needs, low-income patients may be reluctant to disclose social problems due to stigma and/ or discrimination while family physicians may be reluc- tant or feel ill-equipped to probe for these issues [20]. The resulting lack of knowledge of patients’ circum- stances can lead to treatment plans patients are unable to follow [21]. Family physicians may also lack knowl- edge of local social and community resources that could benefit their low-income patients [22]. Unwelcoming attitudes or disrespect towards low-income patients and discrimination by family physicians based on ethnicity, immigration status, and gender, in conjunction with low income, may also constitute a barrier to care [23,24]. The effects of these barriers may be compounded by patients’ shame at their personal circumstances, desire to be self-reliant, and real or perceived feelings of discri- mination in the health care system [25]. This study is part of a larger program of research that

aims to support the development of evidence-based edu- cational curricula and practice-oriented tools for family physicians. The aim of this study is to explore expert informants’ perspectives on the barriers to primary care responsiveness to poverty as a health issue. As a study solely of expert informants, this is intended as both a test of the relevance, in a highly resourced jurisdiction with near-universal health care insurance such as Ontario, of what the literature has previously demonstrated in other

contexts, and as a stepping stone to a more comprehen- sive exploration of primary care providers’ approaches to poverty, through a larger study of a broad group of primary care providers and people who live in poverty.

Methods This qualitative pilot study employed semi-structured, in-depth interviews with expert informants in the pro- vince of Ontario, Canada, to develop a provisional map of issues pertinent to optimizing primary care provision for low-income patients. This method is well-suited to the exploration of complex social phenomena such as interactions between physicians and patients, as well as barriers and enablers to care provision for complex- needs populations. Ethics approval for this study was obtained from the St. Michael’s Hospital Research Ethics Board.

Participants A list of fourteen key informants with established aca- demic and/or frontline expertise in the social determinants of health, including income, housing and food security in relation to primary care was compiled by the principal investigator Invitations to take part in an interview were issued by e-mail and participants were informed that the interviews constituted a pilot study intended to support the development of educational curricula for family physi- cians and other health care providers, and to inform sub- sequent research with a broad population of family physicians and people living in poverty in Ontario. Two invitees declined to participate due to time constraints. Purposive (non-probability) sampling, which seeks to

maximize theoretical return by allowing for variation within a focused field of inquiry, was used [26]. Partici- pants thus included 2 urban and 1 rural-based generalist physicians, 1 psychiatrist, 1 internist, 1 street nurse, 1 nurse practitioner, and 5 community activists and social policy experts representing community-based organiza- tions, street outreach programs, hospital-based programs in Toronto, and Toronto-based research hubs including the Centre for Research on Inner City Health, the Welles- ley Institute, and the Metcalf Foundation. The sample was not based on conventional family physicians as many patients living in poverty have more contact with advocacy groups, street outreach programs and hospital-based phy- sicians than they do with mainstream primary care. Parti- cipants included 8 male and 4 female respondents, all but two of whom have focused on the needs of low income patients for much or all of their careers.

The Interview Process Nine face-to-face and three telephone interviews lasting an average of 52 minutes (range 40-75 minutes) were con- ducted. A semi-structured interview guide was developed

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based on issues drawn from the literature reviewed. Inter- views were conducted by an experienced, senior qualitative research practitioner and solicited participants’ views on: challenges of access and delivery of primary care to low- income patients; family physician awareness of and responsiveness to, income level in relation to health; and interventions at both the level of direct patient care, and at the more broadly socio-political level that might improve access and care for low-income patients. All interviews were digitally audio-recorded for verbatim transcription.

Analysis Transcripts were checked against sound files for accu- racy, entered into HyperResearch software for qualitative data analysis and coded for both anticipated and emer- gent themes. A coding framework was developed in dis- cussion with the study team. Independent coding of a selection of transcripts by another study team member was used to ensure consistency in application of analytic codes. For the analysis, the method of constant comparison

was used and included searches for disconfirming evi- dence. As this was only a pilot study, no respondent validation exercise was conducted. It is anticipated that respondent validation will be included in subsequent phases of the larger research program of which this study was a part.

Results The study revealed a wide range of patient- and provi- der-centred barriers to low-income patients accessing care which is responsive to their poverty as a risk factor for health. These included structural, attitudinal and, for providers, knowledge-based barriers. On the patient side, issues that replicate findings reported in the exist- ing literature included lack of access to transportation in both urban and rural settings, not having a valid health insurance card and difficulty making and keeping appointments. Also echoing established findings were limited help-seeking linked to stigma and shame at per- sonal circumstances, low literacy levels, substance abuse issues and cognitive impairment. On the provider side, inflexible practice rules that are difficult for low-income patients to comply with, billing structures that discou- rage longer appointments, unwelcoming practice envir- onments and a lack of familiarity with the social security system and relevant community-based resources were frequently named as contributing to sub-optimal care for this patient group. Beyond these familiar find- ings, however, additional evidence emerged that indi- cates the need for intervention at the level of direct physician/patient interaction rather than at the policy or population level.

Failure to respond to the social determinants of health as a lived reality Several participants argued strongly that while the aver- age family physician in Ontario would likely be familiar with the social determinants of health as a concept, few would have a substantive appreciation of the lived reality of social disadvantage:

They might see it … in terms of a theoretical aca- demic construct but I don’t think they’d actually understand the real reality of it in terms of what it actually means for a person to get × amount of dol- lars and be forced to try to live on those dollars … [PH01]

This was not presented as evidence of ill-will or a lack of compassion but as a consequence of the social dis- tance between physicians and their low-income patients:

… people that go to university and become health professionals tend to be people that are from a higher social class … and once you get working as a health professional that makes good money you also con- tinue to occupy a social class where … you can’t even imagine that people are hungry and you can’t even imagine that people can’t afford healthy food or have to eat Kraft Dinner every day … it’s just so outside your lived experience that you don’t think about it. [PH03]

A concomitant gap was the physicians’ lack of aware- ness of patients’ medically relevant personal details. For, although income level is widely acknowledged to be a powerful determinant of health, many participants felt that physicians generally did not have the demographic data necessary to identify and respond to the risks asso- ciated with low income in the way they would routinely respond to health risks such as smoking or hyperten- sion:

I suspect that most physicians would be reluctant or it would not be in their consciousness to enquire about people’s economic circumstances, employment, income, debt, nature of their housing … There’s not a high degree of awareness about it … If they bring in a general Welfare form or an ODSP application or an unemployment form, obviously that should alert the physician the person’s not exactly well off. I’m not sure how much would be pursued thereafter … it’s not in people’s consciousness to look, to gaze beyond the individual patient and try to see what the cir- cumstances of their life are that might be making them sick … [PH12]

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Lack of awareness of patients’ social circumstances was also cause for concern because of the likelihood that care plans devised in the absence of this informa- tion would be difficult or impossible for patients to follow:

… you cannot treat cellulitis unless you know some- body’s social circumstances and are they able to take the medication QID four times a day, are they able to afford the medication, do they have a watch … can they eat … do they have enough to eat? … [PH07] … people all the time … say to me, “I’m supposed to be on these four medications. Which one is the most important because I can only afford one?” [PH03]

This, in turn, might lead to medications being pre- scribed in a futile manner or as a substitute for more time-consuming but ultimately more appropriate care:

You might live in a mould-infested basement that’s really the cause of your respiratory illness and the physician might never think to say, “Where are you staying and what is it like there?”… maybe he spends a year giving you medicines that don’t work because the cause of your problem is your crappy housing. [PH03]

Care plans devised in the absence of adequate infor- mation about patients’ personal circumstances were also seen as contributing to negative attitudes toward low- income patients since their inability to follow plans as indicated could easily be interpreted as non-compliance:

… a physician says “… take this antibiotic three times

… on a full stomach,” and I always laugh hysterically and the women who I know who are working poor laugh because they know that, “Yeah, three meals, like what’s he talking about, three meals? A full sto- mach!” [PH11] … I had … an old guy that needed diabetes medicine who lived in a shelter in Toronto … he was elderly and he had mobility issues and he didn’t take any of his diabetic medication because the side-effect that it caused for him was diarrhoea and he was living in a shelter with 60 younger men and two toilets … he had no chance of getting to the toilet if he needed to quickly so he wasn’t going to take his pills … because he couldn’t manage in that environment. [PH03]

Prejudicial attitudes and feeling overwhelmed at the scope of the problem All participants believed that prejudicial attitudes on the part of family physicians were a considerable barrier to

low-income patients accessing optimal care. Many felt that physicians often shared in the commonly-held belief that poor people are poor as a result of their own perso- nal failings, the implication being that they are, on some level, less deserving of attention and healthcare resources than wealthier patients:

I think physicians do recognize that poverty and housing are determinants of health but I think that many of them view … poverty as a result of indivi- dual failings and that poor people essentially bring it on themselves … most physicians are very hard-work- ing people who … because they’ve achieved success through hard work tend to view those who didn’t achieve success as people who didn’t work hard. [PH08] … there’s a terrible pathology that’s applied to people who are homeless that somehow they’re the authors of their own misfortune, that they are either bad or weak and that these kinds of factors explain their poverty and their homelessness. [PH09] … there’s more of a judgement … they smoke too much, they drink too much … that’s where the focus is … [PH04]

Participants also maintained that many physicians feel that responding to issues such as inadequate income or housing falls outside the duty of care of family physi- cians, that these are problems that they are not obliged to address and which are, in any case, beyond their reach:

… when I work with homeless patients, I’m mostly focusing on their medical problems, not on how can I solve their homelessness or how can I address their poverty … I can only imagine that that’s probably true for most physicians. [PH08]

Moreover, in contrast with the medical response to other health risk factors such as smoking or hyperten- sion, physicians often have no idea what steps they could take to address health issues related to poverty:

… people have this vague understanding that the rela- tionship between income and illness is a linear one and the higher your income the lower your health risks … but nobody really equips us to translate that. We know that hypertension is a health risk and we know that we can order anti-hypertensives … so it’s really easy for me to intervene on that issue because I know what to do … and it takes, like one second to write a prescription … if … people’s shitty housing or lack of housing causes their health problems, I don’t know what I can do with that … I don’t see that as

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something that medicine can deal with. I see that as something that the government maybe needs to deal with, or … some social worker or something. [PH03]

Discussion This study confirms the relevance to a jurisdiction such as Ontario of the findings of previous studies that have looked at addressing the primary care needs of patients who live in poverty, and adds to their findings. Given the numerous barriers identified, these results place renewed emphasis on the need for primary health care providers to consider and address income as a distinct risk to health, and for researchers to explore these issues with a broader group of primary care providers and peo- ple who live in poverty. The context of this study is significant. Ontario is a

well-financed jurisdiction with a strong, publicly mana- ged and financed health system. Nevertheless, the bar- riers to addressing the health risks posed by poverty are similar to those identified in previous studies conducted in other settings. These similarities may point to struc- tural deficiencies in primary care practice that repeat across jurisdictions. Poverty as a social determinant of health has tradition-

ally been tackled by public health practitioners and public policy developers. However, the barriers identified here are, in many cases, concrete and surmountable and point to the potential ability of individual primary care provi- ders to directly mitigate the effect of poverty as a risk to health by means of enhanced education and alteration of routine practices. This may allow for significant action on poverty as a health risk, while simultaneously working toward higher level systemic changes to reduce the impact of poverty on health.

Limitations of the Study and indications for further research Despite differences of degree, all participants in this study broadly shared a left of centre political perspective and were already professionally focused on the social determinants of health. As a result, changes such as the re-structuring of physician remuneration, and the need for more flexibility in the organization of primary care facilities, are consistently supported. The views of healthcare providers situated elsewhere along the politi- cal spectrum and who do not have the social determi- nants of health as a primary focus may diverge from those expressed in the study. Second, all of the partici- pants are based in southern Ontario, and most in Tor- onto. Efforts should be made in further research to hear voices from throughout Ontario, to ensure the adequate incorporation of views from more remote, rural and smaller urban areas. Third, while expert informants

shared their views of what they believe typified interac- tions between family physicians and their low-income patients, further research is necessary to directly elicit the views and experiences of a range of family physi- cians and low-income patients. Finally, because of their involvement in advocacy work or the provision of healthcare to extremely marginalized populations, many of these participants focused on the most extreme end of the poverty spectrum. As a result, the working poor and other less visibly marginalized populations were inadequately represented in this study.

Conclusion This study confirms the relevance, to a highly resourced jurisdiction with near-universal health care insurance such as Ontario, of the findings of previous studies that have found significant barriers exist to low-income patients obtaining high quality primary care, and to pri- mary care practitioners addressing their patients’ poverty as a risk to their health. These barriers are now well known and well replicated. The consistency of these findings suggests it may be time to shift the research and clinical discourse away from identification of bar- riers and toward an examination of primary care-based interventions into poverty as a risk to patients’ health.

Acknowledgements Funding for this project was provided by the Department of Family and Community Medicine at the University of Toronto, the St. Michael’s Hospital Foundation, and the St. Michael’s Family Medicine Associates.

Author details 1Department of Family and Community Medicine, St. Michael’s Hospital, 80 Bond St., Toronto, Ontario, M5B 1X2, Canada. 2Department of Family and Community Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada. 3Toronto, Ontario, Canada. 4Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada.

Authors’ contributions GB conceived of the research question and oversees the broader research program, secured funding for the project, assisted in the development of interview guides and analytic frameworks, and was involved in every stage of the writing of the manuscript. LR guided the development of the qualitative research protocol, conducted all interviews and analysis, and was involved in every stage of the writing of the manuscript. BG conducted the literature reviews for the project, participated in conceptual meetings concerning the broader research program, commented on the analytic framework, and edited drafts of the manuscript. All of the authors reviewed and approved the final manuscript.

Authors’ information GB is a family physician with an inner city practice at St. Michael’s Hospital in Toronto. He is Assistant Professor in the Faculty of Medicine at the University of Toronto. He is Chair of the Ontario College of Family Physicians’ Committee on Poverty and Health, and founding Primary Care Director of Inner City Health Associates, a group of over sixty physicians working with the homeless in Toronto. He frequently educates health providers and trainees about interventions into poverty as a health issue. He is regularly called on by the media to discuss issues related to poverty and health. LR is an independent qualitative health research consultant in Toronto. She holds a DPhil from Sussex University. Over the past ten years she has

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worked with research teams at many leading teaching hospitals and academic research centres in the UK and Canada. In addition she has worked with many governmental and quasi-governmental agencies, health and social care non-profit organizations and grassroots community groups. BG holds a Masters in Health Science in Health Promotion from the University of Toronto. He has a strong research interest in the social determinants of health, and a long history of organizing and advocacy on issues related to social justice and health. He is currently director of the Transgender Equality Network Ireland.

Competing interests GB is actively involved in education and advocacy work focused on educating primary care providers, policy makers, and the general public about the health impacts of poverty. He is a founding member of the advocacy group Health Providers Against Poverty, and Chair of the Ontario College of Family Physicians’ Committee on Poverty and Health.

Received: 11 March 2011 Accepted: 29 June 2011 Published: 29 June 2011

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