Patient Support & Patient Support &

AdvocacyAdvocacy

“…we must take control of our own bodies before we can liberate our minds and be our own people”

(Nancy Miriam Hawley, in Wells 42).

Core Advocacy SkillsCore Advocacy Skills Building Capacity/ Empowerment Assessment Empathy Listening & Communicating Confidentiality Decision Making Asset-based, Creative Problem Solving Ethics Collaboration Case Management

Services of AdvocacyServices of Advocacy Information Sharing & Education: -To provide resources of care & knowledge of

illness. -To help patients understand their rights and

responsibilities. -To aid patients & caregivers in making

informed decisions regarding treatment(s). Emotional Support: -To counsel patients & caregivers through the

emotional struggles of dealing with an illness. Awareness: -To draw community attention to a health

problem; raise research moneys; defeat social stigmas.

BenefitsBenefits Patients’ confidence & self esteem

grows Compliance of treatment(s) Interest in community outreach

programs & research endeavors builds Effective communication between

doctor & patient. (for example: patient knows what questions to ask; doctor has better idea of what patient is going through)

Types and ApproachesTypes and Approaches*note* different types of advocacy may *note* different types of advocacy may overlapoverlap

Self-Advocacy (Our Bodies, Ourselves) Advocacy via Hospital (in-house advocacy) Doctor Advocacy (this can be part of an in-

house hospital program, or separate) Nurse Advocacy (this can be part of in-house,

or separate) Lay Patient Advocacy and Support Community/Public Advocacy Online Advocacy (websites; YouTube patient

diaries)

  Refers to an individual’s ability to effectively

communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights.  It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)

self-help books & educational books (Our Bodies, Ourselves)

internet information seeking Asking the doctor questions (& knowing which questions

to ask) Changing doctors if necessary (patients should

advocate for his/herself to be in a positive effective relationship, including the relationship with his/her doctor)

Keeping track of one’s medical records. Participating in groups (becoming a member of a

support group to seek more information and/or for emotional support)

Self-AdvocacySelf-Advocacy

Self-AdvocacySelf-Advocacy: Our Bodies, : Our Bodies, OurselvesOurselves

“Understanding the medical terminology means we can now understand the things doctors say. Knowing their language makes medical people less mysterious and frightening. We now feel more confident when asking questions” (BWHBC, in Wells 189).

 “Knowledge of anatomy would give women tools to combat the imposition of medical knowledge, would dismantle the doctor’s right to proclaim what was happening in the body of a female patient. Knowledge of medicine, particularly knowledge of medical vocabulary, was a practice of power” (Wells 177).

“The woman who understood her own pregnancy and birth process dramatically represented the possibilities of a reafferent monitoring of one’s own body: she could take care of herself; she was equipped to resist medical manipulation” (198).

peer-to-peer matching cancer, HIV, chronic illnesses

wellness/therapeutic programs recently diagnosed, remission, prevention

pamphlets/packets/DVDs common tools

patient advocates most salient component of patient advocacy

counseling (Rapp)

questionnaires after discharge from hospital

Advocacy via Hospital (in-Advocacy via Hospital (in-house)house)

Activist physicians

Holistic medicine/holistic practitioners (midwives)

The Riverview Project (Segal) clinician-driven advocacy and reform “The clinicians involved in the Riverview

project entered the study with the expressed goal of improving the conditions for consensual decision making” (Segal 103).

Doctor & Clinician Advocacy

Nurse AdvocacyNurse AdvocacyNurses are often put into highly delicate situations regarding ethics of a patient’s care, caught between the patient’s wishes (or presumed wishes), the family, and the doctor. Nurses are in a powerful position to act as patient advocates, including:

Providing better communication between doctor and family.Assessing patient’s vitals collectively throughout day and reassessing next steps with physician. Questioning patient care decisions on behalf of a sick patient (based on close observation).Helping the patient & family understand their rights and responsibilities.

Lay Patient Advocacy & Support

Family

Friends

Former & Current Patients

Caregivers

Associations/Organizations (Alzheimer’s Association, Susan G. Komen)

Event-driven & Theme-driven Awareness Campaigns5K walks/runs, ribbons, pink everything, rubber bracelets—beneficial? exploitative? empty?

Community Outreach Programson-campus HIV awareness campaigns; community outreach for HIV testing; Flu vaccination programs

Community/Public Advocacy

Online Advocacy

Support websites (www.imazebra.net)

Medical Center websites (MDAnderson)Online home videos-- diaries of patients & awareness videos http://www.youtube.com/watch?v=y-wUJ9kZ-Qs&feature=related (start at 3min49sec)http://www.youtube.com/watch?v=yKUvFG8-jY0

Notes on Online Notes on Online DisinhibitionDisinhibition

Anonymity: Principle of 12-step programs, Anonymity provides a level of safety in self-disclosure on sensitive topics

Invisibility: People cannot see each other face-to-face giving them the courage to speak their minds

Delayed Reactions: Beneficial because you don’t have to deal with someone’s immediate reactions necessarily (but flipside is Delayed Reaction may prove frustrating if you do not receive an answer to a posting or question quickly enough as needed)

Solipsistic Introjection: Feeling as if your mind has merged with the minds of other group members

Neutralizing Status: Group members are not confined by status or power; all start off “on a level playing field”

Early American public health movements (clean, safe housing; sanitation; overcrowding; cholera; smallpox)

Contemporary examples: vaccines (for/against); school cafeteria reform

health reform movements (anti-tobacco, food pyramid)universal health care movement breast cancer and environmental toxins movementnatural birth and/or breastfeeding movements

Natural Health Movementexposes health concerns related to items of consumption such as corn syrup, plastics, fluoride, aspartame, mercury

Public Health Movements

Public Health Movements (from Wells)

“Public sphere theorists, beginning with Jurgen Habermas, have shown that the definition of a public issue, who can speak to it, and what counts as an argument for or against it are among the most consequential of all acts of persuasion” (Wells 4). Persuasion through education leads to

social change Women asserted their rights to “speak to”

particular issues via feminism and consciousness-raising

Our Bodies, OurselvesOur Bodies, Ourselves: 1973; 1: 1973; 1stst S&S edition S&S edition

“No one has ever spoken like this, careening from

detailed technical information to the

expansive assertion of a political manifesto to

the directness of colloquial body talk”

(Wells 32).

Susan WellsSusan WellsOur Bodies, Ourselves and the Our Bodies, Ourselves and the Work of WritingWork of Writing

“‘The purpose of this paper [the anatomy chapter] is then to help us learn more about our own anatomy and physiology, to begin to conquer the ignorance that has crippled us in the past when we have felt we don’t know what’s happening to us. The information is a weapon without which we cannot begin the collective struggle for control over our own bodies and lives’” (The Boston Women’s Health Book Collective, in Wells 31).

19981984

Susan WellsSusan WellsOur Bodies, Ourselves and the Our Bodies, Ourselves and the Work of WritingWork of Writing

“In its movement from surface to interior, the 1976 edition offered the possibility of wholeness and integration: this is a known body, and its surface has been redeemed by the subject’s knowledge of its interior. …the body has become whole, and one” (156).

“Instead of exigent judges, they would become investigators. Instead of searching for surface flaws, they would discern the subtle workings of interior organs” (163).

“The anatomical knowledge that comes to light in these investigations is secondary to the reader seeing herself as an agent who produces knowledge of, and sensation in, her body” (163).

2005 (and more)

http://www.ourbodiesourselves.org

Patient Support Patient Support Websites:Websites:

www.stopthethyroidmadness.comwww.imazebra.netwww.aboutmecfs.orghttp://www.mdanderson.org/http://www.ic-network.com/

Group activityReview website & think about the following questions:

Detailed technical information; Expansive assertion of a political manifesto; Directness of colloquial body talk (Wells 32)

Do you feel the website you are reviewing fits these three components and if so how? If not, why?

If there is a political manifesto, is it blatant or hidden within the text?

What types of information are shared between patients on these websites?

Could this website improve patient-doctor communication? Could it conflict with effective patient-doctor communication? How?