Judy Mill

Stigma associated with Ghanaian caregivers of AIDS patients.

This study explores the experiences of informal caregivers of AIDS patients in Accra, the capital city of Ghana. Fifteen interviews were completed in 2002 with 11 informal caregivers, including wives, mothers, boyfriends, daughters, sons and brothers of AIDS patients. Three major themes emerge in the analysis of the interviews with caregivers: stigma, caregiver burden, and caregiver commitment. In this article, the authors focus on the theme of stigma by documenting its presence and highlighting its impact on caregiving activities. Caregivers go to great effort to not only “hide” their patients but also their care giving activities, resulting in the social isolation of both patients and their caregivers. Many caregivers live in secrecy, not sharing their family member’s diagnosis with extended family members. As a result, they receive limited support from the extended family. Stigma results in negative attitudes of neighbors, relatives, and health care workers toward caregivers and their patients.

Linking global citizenship, undergraduate nursing education, and professional nursing: curricular innovation in the 21st century.

As we move into the 21st century, our roles as nurses are becoming more complex. Inequities in health within and across nations demand that nursing students examine the interconnectedness between local and global health challenges and contribute to the development and implementation of solutions to these challenges. In this article, we examine concepts related to global citizenship, globalization, social responsibility, and professionalism and link them to curricular innovation in nursing education. We argue that the development of global citizenship is a fundamental goal for all nursing students and that to achieve this, nurse educators must move beyond the creation of international placement opportunities or the use of global examples within existing courses. Nurse educators must develop strategies and design innovative curricula to provide opportunities for all students to become engaged with the concept of global citizenship and the role of nurses in a global world.

Stigmatization as a Social Control Mechanism for Persons Living with HIV and AIDS

Stigmatization contributes to inequity by marginalizing persons living with HIV and AIDS (PHAs). In this study we examined the stigmatizing practices in health care settings from the perspectives of PHAs and health care providers (HCPs). A qualitative design, using a participatory action research approach, was used. Interviews and focus groups were completed with 16 aboriginal and 17 nonaboriginal individuals living with HIV (APHAs and PHAs) and 27 HCPs in Ottawa and Edmonton, Canada. We present findings to support the premise that stigmatization can be used as a social control mechanism with PHAs. Participants described both active and passive social control mechanisms: shunning and ostracizing, labeling, and disempowering health care practices. Forgiving behavior, balancing disclosure, practicing universal precautions, bending the rules, shifting services, and reducing labeling were strategies to manage, resist, and mitigate social control. The findings illustrate the urgent need for multilevel interventions to manage, resist, and mitigate stigma.

HIV Testing and Care in Canadian Aboriginal Youth: A community based mixed methods study

BackgroundHIV infection is a serious concern in the Canadian Aboriginal population, particularly among youth; however, there is limited attention to this issue in research literature. The purpose of this national study was to explore HIV testing and care decisions of Canadian Aboriginal youth.MethodsA community-based mixed-method design incorporating the Aboriginal research principles of Ownership, Control, Access and Possession (OCAP) was used. Data were collected through surveys (n = 413) and qualitative interviews (n = 28). Eleven community-based organizations including urban Aboriginal AIDS service organizations and health and friendship centres in seven provinces and one territory assisted with the recruitment of youth (15 to 30 years).ResultsAverage age of survey participants was 21.5 years (median = 21.0 years) and qualitative interview participants was 24.4 years (median = 24.0). Fifty-one percent of the survey respondents (210 of 413 youth) and 25 of 28 interview participants had been tested for HIV. The most common reason to seek testing was having sex without a condom (43.6%) or pregnancy (35.4%) while common reasons for not testing were the perception of being low HIV risk (45.3%) or not having had sex with an infected person (34.5%). Among interviewees, a contributing reason for not testing was feeling invulnerable. Most surveyed youth tested in the community in which they lived (86.5%) and 34.1% visited a physician for the test. The majority of surveyed youth (60.0%) had tested once or twice in the previous 2 years, however, about one-quarter had tested more than twice. Among the 26 surveyed youth who reported that they were HIV-positive, 6 (23.1%) had AIDS at the time of diagnosis. Delays in care-seeking after diagnosis varied from a few months to seven years from time of test.ConclusionIt is encouraging that many youth who had tested for HIV did so based on a realistic self-assessment of HIV risk behaviours; however, for others, a feeling of invulnerability was a barrier to testing. For those who tested positive, there was often a delay in accessing health services.

Nursing care of AIDS patients in Uganda.

This article reports the findings from a participatory action research study concerning the experience of Ugandan nurses caring for individuals with HIV illness. Six key informants from government and non-governmental organizations were interviewed using a semistructured format. Six nurses from a large national referral hospital in Kampala, Uganda, participated in 10 focus group meetings during a period of 11 months. In-depth interviews, focus groups, and photovoice were used to collect the data. Findings indicate that nurses faced many challenges in their daily care, including poverty, insufficient resources, fear of contagion, and lack of ongoing education. Nurses experienced moral distress due to the many challenges they faced during the care of their patients. Moral distress may lead nurses to quit their jobs, which would exacerbate the acute shortage of nurses in Uganda. This study provides important knowledge for guiding clinical practice and nursing education in resource-constrained countries like Uganda.

Culture, context and community: ethical considerations for global nursing research

High-quality research is essential for the generation of scientific nursing knowledge and the achievement of the Millennium Development Goals. However, the incorporation of Western bioethical principles in the study design may not be suitable, sufficient or relevant to participants in low-income countries and may indeed be harmful and disrespectful. Before engaging in global health studies, nurses must consider carefully the cultural and social context and values of the proposed setting in order to situate the research within the appropriate ethical framework. The purpose of this paper was to examine the ethical principles and considerations that guide health research conducted in international settings using the example of a qualitative study of Ugandan nurses and nurse-midwives by a Canadian researcher. The application of Western bioethical principles with their emphasis on autonomy fails to acknowledge the importance of relevant contextual aspects in the conduct of global research. Because ethics is concerned with how people interact and live together, it is essential that studies conducted across borders be respectful of, and congruent with, the values and needs of the community in which it occurs. The use of a communitarian ethical framework will allow nurse scientists to contribute to the elimination of inequities between those who enjoy prosperity and good health, and those who do not.

HIV testing experiences of Aboriginal youth in Canada: service implications

Abstract The objective of this study was to explore HIV testing experiences and service views of Canadian Aboriginal youth in order to provide information for HIV testing services. An exploratory, mixed-method, community-based research design was used for this study. Findings reported here are from 210 survey participants who had experienced an HIV test. Youth were recruited through 11 Aboriginal organizations across Canada, including AIDS service organizations, health centers, community organizations, and friendship centers. Youth who had tested for HIV ranged in age from 15 to 30 years of age (20% were <20), and came from First Nations (75%), Métis (14%), and Inuit (9%) backgrounds. Participants lived in all provinces and one territory. Over half (62%) were female. While the majority of survey respondents indicated at their last HIV test they had been treated with care (80%), respect (77%), or kindness (76%), some reported being treated with hostility (19%), fear (12%), discrimination (11%), avoidance (10%), or being treated in a bored way (15%). When asked about information they had received, 28% of survey respondents could not remember; 23% said they were not given any information, and 24% said their questions were not answered. Emotional reactions to testing ranged from anxiety/apprehension (64% of survey respondents) to being “calm” (19%). When asked for suggestions to improve testing services, participants indicated emotional support, compassion, professional yet personable services, and personalized HIV information were important. Study results suggest that to facilitate HIV testing for Aboriginal youth, testing services and counseling must be respectful, compassionate, non-judgmental, and culturally responsive in order to provide emotional support and HIV information that is meaningful and memorable.

Understanding the language, the culture, and the experience: Translation in cross-cultural research.

Achieving conceptual equivalence between two languages is a challenge in cross-cultural, cross-language research, as the research is conducted in a language that is not the researchers or research teams first language. Therefore, translation provides an additional challenge in cross-cultural research. The comprehension and interpretation of the meaning of data is central in cross-cultural qualitative analysis. The purpose of this article is to provide an overview of the translation process and explore some of the challenges, such as difficulties in finding a suitable translator, and the importance of communication between the researcher and the translator.

Cervical Screening in Canadian First Nation Cree Women

Purpose: Attitudes and beliefs of First Nation Cree women living in a reserve community were explored to gain insights into how cervical screening could be better utilized. Method: Focused ethnography utilizing participant observation and interviews ( n = 8) with participants having experience with cervical screening and/or cancer was conducted. Results: Women did not believe they had adequate information and were resistant to screening because of embarrassment caused by the procedure and fear of cancer, which was viewed as a “death sentence.” Conclusions: Challenges faced by First Nation Cree women when contemplating cervical screening are presented. Nursing sensitivity is needed to strategize access to cervical screening that is culturally appropriate.

Discovering Voice: A Participatory Action Research Study with Nurses in Uganda

In this article the authors present findings from a qualitative research study carried out with Ugandan nurses from September 2003 until June 2004. They highlight the process and philosophical basis of participatory action research (PAR) by reflecting on the challenges, opportunities, outcomes, and ethical issues encountered during the conduct of the research. In this study PAR fostered a climate in which nurses could engage in collective reflection on their practice, make sense of their experiences, and thereby change their understanding of their work.