RESUMEN
UNLABELLED: Researchers who investigate social and economic determinants of health often interact with vulnerable and marginalized populations. Great care must be taken to conduct research studies involving vulnerable persons in a manner consistent with accepted ethical principles in order to protect participants from exploitation, to build capacity, and to promote wellbeing. Children form a particularly vulnerable group, especially those who do not enjoy the protection of parents or guardians. METHODS: A research project which studied South African Sunnyside's street children was used as a case study to illustrate ethical issues surrounding research with vulnerable populations. DISCUSSION: The participants in the case study lacked the age of majority and were without any legal guardian. The researchers experienced considerable difficulty in obtaining ethical approval to conduct the study. The street children, at first, were not allowed to give informed consent for the study because of their minor age. Ethical principles of autonomy, disclosure, competence and understanding, consent and voluntariness, beneficence and non-maleficence, and justice are described and applied to this case study involving street children in a South African neighbourhood. It is suggested that by working within an ethical framework, the safety of research participants will be assured and the quality of the research will be enhanced.
Asunto(s)
Ética en Investigación , Investigación sobre Servicios de Salud/ética , Jóvenes sin Hogar/psicología , Menores/psicología , Sujetos de Investigación/psicología , Poblaciones Vulnerables/psicología , Adolescente , Niño , Promoción de la Salud/métodos , Jóvenes sin Hogar/legislación & jurisprudencia , Humanos , Consentimiento Informado/ética , Consentimiento Informado/legislación & jurisprudencia , Menores/legislación & jurisprudencia , Estudios de Casos Organizacionales , Percepción , Pobreza , Sujetos de Investigación/economía , Sujetos de Investigación/legislación & jurisprudencia , Autoimagen , Clase Social , Justicia Social/ética , Sudáfrica , Poblaciones Vulnerables/legislación & jurisprudenciaRESUMEN
INTRODUCTION: The purpose of this naturalistic inquiry was to describe the experience of living with HIV infection in rural Alberta, Canada. Although the urban HIV epidemic has been well researched, the virus continues its spread into more remote populations where there is a need to understand and address its impact. Affected rural residents form a diverse and marginalized group that includes women, Aboriginal peoples, immigrants, injecting drug users, and men who have sex with men, yet there are few data available to inform appropriate health and social services and practice. A number of factors, such as stigma, invisibility, isolation, confidentiality, poverty, and risk behaviours, contribute to the rural experience, but have not been clearly explicated in the literature. This study was conducted in order to better understand the perceptions of health in a rural setting, the processes involved in accessing care, the challenges and benefits associated with rural life, and the relationship between personal beliefs and values and the nature of the disease. METHOD: Semi-structured interviews were conducted with six HIV-seropositive individuals and one caregiver who were living or had lived in rural settings, as well as four AIDS agency staff from a small city. Participants represented varied backgrounds, ages, sexual orientations, exposure to risk behaviours, lifestyles, roles, and citizenship. A naturalist inquiry approach was used in order to explore the qualitative aspects of the experience. Interviews were recorded, transcribed, and analyzed. Documents such as poetry, letters, field notes and journals served to enrich the data. RESULTS: Participants identified the components of health as a sense of wellbeing, quality of life, and independence. Within the context of HIV infection, health was achieved through three processes: (1) accommodating the reality of the diagnosis into daily life; (2) creating and engaging in supportive relationships and communities; and (3) reflecting on the meaning of one's life and future. Rural life had various meanings and implications for individuals, in terms of security, comfort, relationships, access to services, attitudes, dignity, and justice. Barriers and challenges to reaching health centred around a lack of skill and knowledge in human services workers, violation of confidentiality, difficulty associated with travel for medical care, and inadequate support for family caregivers. Participants suggested that the health of the community is reflected in the health of individuals. They expressed the hope that some day diversity would not only be tolerated, but would be celebrated by all members of society. CONCLUSIONS: Rural residents perceive and enact health in distinct ways. Caregivers must understand that health usually represents a concern only after it has failed and self-initiated attempts to overcome problems have been unsuccessful. Participants in this study articulated their need to live in a society that acknowledges their diversity and honours their rights to access health and social supports in the community. Service providers may enhance care and promote health of this aggregate through education, attention to professional responsibilities, fostering resilient communities, and advocating for vulnerable members of society. Further research needs to be conducted in order to learn more about the relationships between HIV infection and rural living and the needs of people who live in such situations. With this knowledge, appropriate healthcare services can be developed and implemented to enhance the wellbeing and quality of life for individuals, families, and communities.
Asunto(s)
Infecciones por VIH/psicología , Conocimientos, Actitudes y Práctica en Salud , Población Rural , Adaptación Psicológica , Adulto , Alberta , Toma de Decisiones , Femenino , Humanos , Entrevistas como Asunto , Estilo de Vida , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Calidad de Vida , Apoyo Social , Valores SocialesRESUMEN
Nurses have always played a vital role in the response to outbreaks of deadly illnesses. The story of Alberta nurses' heroic efforts in the face of the Spanish influenza epidemic of 1918-19, in the absence of public health infrastructure, reminds us of the importance of preparedness. The virus, which accompanied soldiers returning from Europe after the First World War, spread quickly along transportation routes from Eastern Canada to the West. Although many nurses had not yet returned from war service, or were assisting in Halifax following the explosion of 1917, those who were available in Alberta vo unteered without hesitation to care for victims of the virus. In the absence of cure, good nursing care was usually the only treatment for the illness. Recognition of the need for planned response to crises, availability of resources and excellent skills and knowledge prompted nursing leaders to lobby the government for a formal public health system and contributed to the organization of professional nursing associations. In the likely event of another global influenza pandemic, nurses may draw upon the lessons of the past as they once again face the complex challenges of a modern health crisis.
Asunto(s)
Brotes de Enfermedades/historia , Gripe Humana/historia , Gripe Humana/enfermería , Rol de la Enfermera/historia , Animales , Aves , Canadá/epidemiología , Control de Enfermedades Transmisibles/tendencias , Predicción , Planificación en Salud/tendencias , Historia del Siglo XX , Historia del Siglo XXI , Humanos , Gripe Aviar/prevención & control , Gripe Humana/epidemiología , Práctica de Salud Pública/historiaRESUMEN
INTRODUCTION: Significant health problems encountered in adulthood often have their roots in health behaviours initiated during adolescence. In order to reverse this trend, school and health personnel, as well as parents and other community members working with high school students, need to be aware of the health-related beliefs and choices that guide the behaviours of teenagers. Although a wide variety of research has been conducted on this topic among urban adolescents, less is known about the health beliefs and behaviors of adolescents residing in rural areas, particularly in Canada. In general, rural Canadians are less healthy than their urban counterparts. Building on the knowledge and understanding of their own community, key stakeholders were invited to engage in the design and implementation of a participatory action research project aimed at understanding and improving the health of rural adolescents. METHODS: A group of parents, teachers, students, school administrators and public health nurses engaged in a participatory action research project to better understand determinants of the health of rural adolescents at a high school in Western Canada. Group members developed and administered a health survey to 288 students from a small rural high school, in an effort to identify areas of concern and interest regarding health practices and beliefs of rural adolescents, and to take action on these identified concerns. RESULTS: Results indicated some interesting but potentially worrying trends in this population. For example, while frequent involvement in a physical activity was noted by 75.9% of participants, close to half of the females (48%) described their body image as 'a little overweight' or 'definitely overweight', and approximately 25.8% of respondents noted that they skipped meals most of the time. Differences between the genders were apparent in several categories. For example, more girls smoked (16.2%) than boys (12.3%), and more males (55.0%) than females (41%) had tried illegal drugs. Participants indicated awareness of other health-compromising behaviours, including unsafe driving habits and high stress levels, and acknowledged several steps they wanted to take to improve their health, as well as the barriers to taking those steps. Students identified improved nutrition, stress reduction, and increased levels of physical activity as particular important health goals. Students also recommended ways in which information and support could be provided within the school environment to enable them to achieve their health-related goals. Several activities developed in collaboration with students have incorporated the recommendations, and have spawned other activities in response to the ongoing identification of new concerns. CONCLUSIONS: The process of including the rural community in the identification of health assets and needs from the perspective of students -- as well as the planning and implementation of appropriate strategies to address those needs -- demonstrates the strengths inherent within a small rural population. Community members' awareness of the need to create a healthy environment for youth is reflected in their willingness to participate in activities leading to improved health. Greater awareness of the health needs of rural adolescents, and of the influence of gender in some aspects of health behaviors, will help researchers to explore ways in which the unique culture of rural communities can be harnessed to help shape health-focused interventions.