Self-Advocacy and HIV

Dennis ReillyEmployment Specialist Employment ServicesPositive Resource Center415-777-0333www.positiveresource.org

What Does Self-Advocacy Mean?

Ones belief in ones ability to succeed at certain tasks

If he /she can do it, so can I

The more I practice the better I become at a task.

I can and will take ownership of my healthcare delivery.

Self-Advocacy Movement

Its roots lie in the civil rights movement for people with disabilities.

Refers to people with disabilities taking control of their own lives including decision making for their own care in the medical system.

The self-advocacy movement is about people with disabilities speaking up for themselves.

Self-Advocacy in Action

Assertiveness: Those who feel free to express their

feelings, thoughts, and desires. Those who know their rights. Those who have control over their anger.

It does not mean that they repress this feeling. It means that they control it for a moment and then talk about it later in a reasonable manner.

The Roots of Self-Efficacy This emphasis started in the psychiatric

field during the 1970s, not only to advocate for needed changes in the delivery of services but to encourage patients to take a more active role in their own care.

Since the 1980s, patients have been encouraged to become participants in their own care and to become knowledgeable consumers of the services of medical care.

What is Self-Efficacy?

The concept of self-efficacy lies at the center Albert Bandura’s theory, which emphasizes the role of observational learning and social experience in the development of personality.

According to Bandura's theory, people with high self-efficacy - that is, those who believe they can perform well - are more likely to view difficult tasks as something to be mastered rather than something to be avoided.

At the Doctor’s Office or Clinic Write down questions before going

to a medical appointment. If you don’t understand something,

or if you would like more information, speak up!

Ask for information in writing if needed.

Bring a friend with you to appointment.

Factors affecting self-Advocacy

Experience - "Mastery experience" is the most important factor in deciding a person's self-efficacy.

Modeling - “If they can do it, I can do it as well.”

Social Persuasions - Social persuasions relate to encouragements/discouragements.

5 Steps of Self Advocacy

Define the issue or problem clearly

Ask for what you need Take ownership and be solution

focused Expect Resistance Avoid emotional responses

Methods of Self-Assertiveness Repeating your requests when coming

upon resistance to something you should be entitled to.

Finding some limited truth to agree with when encountering an opposing persons view.

“I” statements. Confidence around Self-Assertiveness can

lie in a persons past history of self-efficacy.

5 P’s of Self Advocacy

Patient Bill of RightsPatient SafetyPreparedPositivePersistent

5 P’s of Self Advocacy

Patent Bill of Rights: I have the right to make informed decisions about my healthcare, to refuse or request services.

Patient Safety: Is this medication, procedure, test, safe for me??

Prepared: I can articulate my concern or indentify a problem and discuss solutions.

5 P’s of Self Advocacy ( con’t)

Positive: I know you care about my well being and safety, how can we solve this together?

Persistent: Can I check back with you to review my meds in 2 weeks.

Patient Bill of Rights Information for patient about their

treatment Access to Emergency care Choice of providers Taking part in treatment decisions Respect and non-discrimination Expectation of medical privacy Expectation of appropriate care

Encountering Resistance Expert Authority: I’m the Doctor!

Dismissive: Its really not that important.

Deflection: I don’t think we should review this matter right now.

Shaming: So you’ve been using the Internet, don’t believe everything you read.

SF Community Examples of Activism and Self-Advocacy

Project Open Hand (http://www.openhand.org/) - In 1985 in San Francisco, Ruth Brinker, a retired grandmother, watched a dear friend die of AIDS. She realized that for many people with HIV/AIDS, malnutrition was causing death as much as the illness itself. At that time, no social service agency was providing meals to those too weak from AIDS or too impoverished to feed themselves. Using her experience as a manager with another food program, Ruth enlisted the help of her friends, secured a basement kitchen at a local church and began to serve meals to seven clients, Project Open Hand was born.

SF Community Examples of Activism and Self-advocacy

Project Inform (http://www.projectinform.org/) - In 1985, a group of concerned community members joined together to start a short-term "project" at a time when reliable information about HIV/AIDS and its treatment was nearly impossible to obtain. Since then Project Inform has worked to accelerate and facilitate advances in treatment, recognizing that therapeutic breakthroughs are only effective if people living with HIV have access to them. The hope this philosophy inspires is the core of Project Inform's integrated approach to treatment education and advocacy.

The Role of Information and Social Networks.

Access to information and social networks allows support for people to embark on greater self-advocacy, self-assertiveness and self-efficacy.

Who / What is your support?

Information and Networks that Support Self-Advocacy

Friend Internet

Telephone Hotline Community Based Organization

Library Media

Support Group Family Member

Health Care Worker

Resources www.projectinform.org www.Thebody.com www.cdc.gov www.aidsmeds.com www.cdph.ca.gov/programs/AIDS