Supporting Self-Care: The Contribution of Nurses and Physicians

APPENDIX B
Selected Programs and Tools

Description

Dr. Marc Steben is a physician who works out of a clinic in Montréal where he follows the progress of approximately 50 people with HIV and AIDS. He offers Road Map to all of his clients. "Patients should have control of their health. One way is to map out exactly what will happen to them physically, socially and financially. The Road Map is helpful for this," says Dr. Steben.

Road Map is a 130-page, spiral-bound notebook that gives detailed information on what to expect from the time an HIV-positive diagnosis is given until the later stages of AIDS. Road Map explores common questions and answers, coping strategies and available resources. It is written clearly and frankly and gives users plenty of room for writing personal information.

Road Map was developed in Montréal as a part of Project Access, a comprehensive pilot program on living with HIV and AIDS. The use and effectiveness of the notebook have been extensively evaluated, by both the Project Access Team (Project Access 1996) and Le Groupe de recherche interdisciplinaire en santé at the University of Montreal. The evaluation results have been highly positive, particularly in terms of knowledge gain and client satisfaction. Road Map is available free of charge from the National AIDS Clearinghouse.

Characteristics of Note

Learning and personal development

Road Map's overall approach is based on the belief that self-awareness and control are essential to well-being. Practical information on nutrition, living arrangements, budget, transportation and medications are all found in Road Map. The room provided for clients to record their medical history and treatment allows for increased self-reliance and an enhanced sense of security. "Since I've had the Road Map," says a 33-year-old HIV-positive male, "I feel secure because we have all the information. If I need something, I just need to look in the [Road Map] ... and I'll have the solution."

Road Map suggests that "It is of utmost importance that you listen to yourself and trust your own instincts. Whether you are HIV-positive or have developed AIDS, the keys to your well-being are in your hands" (Project Access 1994, 9). In this vein, Dr. Steben notes that "the biggest change I've noticed in my patients is that they'll start coming with lists of questions. They prepare for their visits. It helps them take charge and organize their care."

Client-centred

People living with HIV and AIDS were integrally involved in the development, testing and evaluation of Road Map. It takes consumer readiness and individual differences into account. It explains to the reader that difficult questions are raised and urges them to skip topics with which they are uncomfortable and return to them when they feel ready, either alone or with the help of another (Project Access 1994). This sensitivity, however, does not hide the realities of HIV and AIDS. It is written in a way that lets the client clearly know what he or she may experience:

This road map is designed to help you. It is frank, realistic, and gets right to the point. After all, if you play hide and seek with reality, you'll only end up creating a state of permanent insecurity which will further undermine your ability to deal with this situation. Reading this guide will help you put some order into the whirlwind of ideas, worries, and fears which are running through your head. (1994, 9) Road Map continues in this tone, with headings written in the first person and text written in the second person, making the reader feel more at ease with the subject matter.

Social support

Although Road Map does not provide social support directly, the message that isolation is harmful and that social support is important to quality of life is stressed throughout:

Your personal network of friends and family thus becomes crucial and each one can play a role in helping you. Remember that your friends and family may want to stand by you. ... Their hugs and affection, and the meals they cook for you are all ways of telling you that they care, that you are special to them. So, why neglect them or push them away? (1994, 27)

Road Map offers lists of resources available to people living with HIV and AIDS. One client reports on the importance of this list: "When you first learn that you are HIV-positive, you don't know what to do. You don't know what organizations [to contact], where to go. ... Doctors are there for medical assistance, but there is a lot they don't know." Road Map helps fill in these details. "I would recommend it to everyone," continues the user, "especially at the initial diagnosis. That's when you panic."

For Further Information

• Copies are available from the National AIDS Clearinghouse, 1565 Carling Avenue, Suite 400, Ottawa, ON, K1Z 8R1, tel. 613-725-3434; fax. 613-725-9826.

References

Project Access. 1994. Road map. Montréal: Project Access.

Project Access. 1996. Final report. Montréal: Project Access.