Roy Cain

Lay constructions of HIV and complementary therapy use

This study examines the meanings that individuals with HIV attach to their use of complementary therapies. A qualitative analysis of 66 interviews completed between 1993 and 1998 showed that complementary therapies represent different things for these individuals--a health maintenance strategy, a healing strategy, an alternative to Western medicine, a way of mitigating the side-effects of drug therapies, a strategy for maximizing quality of life, a coping strategy, and a form of political resistance. We found that the meanings individuals ascribe to complementary therapies and the benefits they expect to derive from them are not idiosyncratic, but linked to social characteristics--sexuality, ethnocultural background, gender--and to beliefs about health and illness, values and experiences. We found as well that these meanings are neither mutually exclusive nor fixed. The therapies often appeal to individuals on different levels and their appeal may change over time.

The involvement of people living with HIV/AIDS in community-based organizations: Contributions and constraints

An important feature of the social and organizational response to the HIV epidemic has been that many people living with HIV/AIDS have demanded to have a say in the development of policies and the delivery of services. Surprisingly little attention has been paid in the literature to this involvement. This paper is based on a participatory action research project that involved 70 people with HIV/AIDS in 15 focus group discussions. Findings from the study show the complexities of translating organizational commitments to involve people with HIV/AIDS into practice. This paper outlines the organizational contributions of people with HIV, and examines the difficulties and obstacles to their meaningful involvement. The paper concludes with a discussion of the challenges of user empowerment and with recommendations for policy and practice.

End of Life Care: The Experience of Seniors and Informal Caregivers

As Canadas elderly population grows, an increasing number of seniors will require care as they face the end of life. Relatively little research attention, however, has been given to end-of-life issues, including those related to treatment and care for persons who are both old and dying. Families and health care providers have little direction and guidance to ensure an optimum quality of life for seniors prior to death and during the period of bereavement. This article presents an abbreviated summary of the literature regarding end-of-life issues and challenges for seniors who face a life threatening illness and are at, or near, the end of their lives. The article is also informed by a series of focus groups with elderly and other informal caregivers regarding the giving of help and getting support while caring for persons who are dying. It concludes with a response to this evidence by making a series of recommendations aimed at ensuring optimal end-of-life care for seniors who are dying and their families.

The Experience of HIV Diagnosis Among Aboriginal People Living With HIV/AIDS and Depression:

In this article, we consider how the broad context of Aboriginal people’s lives can shape their experience and understanding of their HIV diagnosis. We conducted interviews across Canada with 72 Aboriginal people living with HIV who also reported feelings of depression. Consistent with what has been found in previous studies, participants responded to their HIV diagnosis with shock, disbelief, and often anger. Prior depression, drug and alcohol use, multiple losses, stigma, and social isolation also shaped how participants experienced their diagnosis. We consider how the history of colonization of Aboriginal communities in Canada relates to the experience of HIV diagnosis, and end with a discussion of the service implications of our findings.

How People With HIV/AIDS Manage and Assess Their Use of Complementary Therapies: A Qualitative Analysis

The objective of this article is to provide a qualitative analysis of the practical concerns that people with HIV/AIDS have with regard to their use of complementary therapies. In-depth semistructured interviews were conducted with a diverse range of people with HIV/AIDS (N = 46). An inductive grounded approach was used to collect and analyze the data. There were five central concerns: (a) selecting which therapies to use, (b) judging which therapies work, (c) combining Western medicine with complementary therapies, (d) assessing the safety of complementary therapies, and (e) dealing with the barriers to the use of complementary therapies. A better understanding of the practical dimensions of complementary therapy use highlights the treatment and care issues that people with HIV/AIDS face and offers insights into the role that nurses might play in addressing some of these issues.

Devoting Ourselves, Devouring Each Other

Abstract Community-based AIDS organizations are now key components in the response to the HIV epidemic in North America. They provide vital AIDS prevention and education and support services to those directly affected by HIV, as well as playing an important advocacy and political role. Despite their many successes, these organizations, like other community organizations, have often been characterized by considerable internal conflict and dispute. This paper draws primarily on interview data from a study of the evolution of 12 AIDS service organizations in Canada. It describes and analyzes some of the tensions and conflicts common in these organizations. The paper ends with a discussion of how to understand this conflicted history, and on the place of anger in community work.

Managing impressions of an AIDS service organization: Into the mainstream or out of the closet?

Organizations, like individuals, can be discreditable and potentially stigmatized. This can affect both the members of the organization and its operation. This study examines how workers in an AIDS service organization in Ontario, Canada, manage its public image as a way of dealing with the stigma which surrounds much of their work. Using data from in-depth interviews with staff members and volunteers, the study describes worker concerns about the appearance of being too closely associated with the local gay and lesbian community and documents some of the strategies they employed to manage the organizations public image. The paper concludes with a discussion of the relationship between organizational impression management and viability in the context of the stigma and uncertainty which surrounds the HIV epidemic.

Challenges to the involvement of people living with HIV in community-based HIV/AIDS organizations in Ontario, Canada

The Greater Involvement of People Living with HIV/AIDS Principle (GIPA) has been a core commitment for many people involved in the community-based HIV/AIDS movement. GIPA refers to the inclusion of people living with HIV/AIDS in service delivery and decision-making processes that affect their lives. Despite its central importance to the movement, it has received little attention in the academic literature. Drawing on focus group discussions among staff members and volunteers of AIDS service organizations, activists, and community members, we explore challenges to the implementation of the GIPA principle in community-based HIV/AIDS organizations in Ontario, Canada. Our findings reveal ways in which implementing GIPA has become more complicated over recent years. Challenges relating to health, stigma and disclosure, evolving HIV/AIDS organizations, and GIPA-related tensions are identified. This paper considers our findings in light of previous research, and suggests some implications for practice.

What Do People Living With HIV/AIDS Expect From Their Physicians? Professional Expertise and the Doctor-Patient Relationship

This qualitative study identifies the types of professional expertise that physicians are seen to possess in clinical encounters from the perspective of people living with HIV/AIDS (PLWHA). Respondents looked to their physicians for expert knowledge in 3 key areas: medical/clinical; legal/statutory; and ethical/moral. Physicians were seen to be authorities in each of these areas and their judgments, though not always agreed with, were taken seriously and influenced the health care decisions made by PLWHA. The authority that comes with professional expertise in each of the areas identified was experienced both positively and negatively by PLWHA. Understanding the expectations of patients in the medical encounter can assist physicians in providing optimal care in the management of HIV/AIDS.

HIV/AIDS Social Services and the Changing Treatment Context

This article examines how medical advances of the past decade affect social services for people living with HIV. Data for the study were drawn from in-depth interviews with 59 social service providers in Ontario, Canada. New antiretroviral treatments help many people to live longer and healthier lives with HIV. As a result of the improved health of clients, the focus of much of the work of social service providers has changed from acute health concerns to more chronic social issues. HIV can be just one of many complex issues in the lives of clients living with HIV/AIDS, as workers increasingly confront social problems, such as poverty, inadequate housing, or unavailable drug treatment services. Workers may have little training or experience in dealing with such issues. The article describes how agencies and workers have had to adapt to new practice realities resulting from effective HIV treatments.