Seeking serenity: living with HIV/AIDS in rural Western Canada

Abstract

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. 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. 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. 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.