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Interrupted LifeExperiences of Incarcerated Women in the United States$

Rickie Solinger and Rebecca Sharitz

Print publication date: 2010

Print ISBN-13: 9780520252493

Published to California Scholarship Online: March 2012

DOI: 10.1525/california/9780520252493.001.0001

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Working to Improve Health Care for Incarcerated Women

Working to Improve Health Care for Incarcerated Women

Chapter:
(p.259) 52 Working to Improve Health Care for Incarcerated Women
Source:
Interrupted Life
Author(s):

Sheila R. Enders

Publisher:
University of California Press
DOI:10.1525/california/9780520252493.003.0053

Abstract and Keywords

Gathering in groups, expressing their fears, frustrations, and hopes, 113 incarcerated women at the largest women's prison in the United States described their need for adequate health care inside prison walls. Twenty focus groups met at Central California Women's Facility over a ten-month period in 2001 and 2002. The author of this chapter helped organize the groups so that incarcerated women could define ways to reduce their health and medical vulnerabilities inside the prison. The women's comments resulted in the compilation and publication of a handbook, Simple Answers to Difficult Healthcare Questions—Choice. The focus group discussions followed a predetermined set of questions in four areas: knowledge/information, experience/process, barriers, and outcomes.

Keywords:   Central California Women’s Facility, incarcerated women, health care, handbook, focus groups

This is my body. I got only one. I put myself here and I’m gonna be here, but I don’t feel my body parts should have to do time.

INCARCERATED FEMALE VOLUNTEER AT A CALIFORNIA PRISON

Gathering in groups, expressing their fears, frustrations, and hopes, one hundred and thirteen incarcerated females at the nations largest women’s prison described their need for adequate health care inside prison walls. Twenty focus groups met at Central California Women’s Facility (CCWF) over a ten-month period in 2001 and 2002. I helped organize the groups so that incarcerated women could define ways to reduce their health and medical vulnerabilities inside the prison. The women’s comments resulted in the compilation and publication of a handbook, Simple Answers to Difficult Healthcare Questions—Choice.

While providing technical assistance for the prison staff, and training hospice inmate-volunteers at CCWF, I learned from many of the incarcerated women that they had difficulty talking about and expressing their health care needs to their medical providers. Like most of us, they seemed to lack basic knowledge and understanding of illness and disease, and these women feared reprisal if they asked for more information or asked too many questions. Like many people in the general population, the women reported they did not know what to ask or how to ask what they wanted to know. Few women inside understood the meaning of advance health care planning or knew about a health care directive. Few were aware that they had the right to complete one. Although most had seen the advance-directive forms, and some had completed one, those with limited reading skills did not understand their purpose.

“I guess because I feel they are superior, I forget everything I went in there for. I can speak my mind to the next person, but when I sit in that doctor’s office, I’m just little.”

(p.260) Many women echoed this woman’s comment. They felt that because the doctors had diplomas on their walls, they must be smarter and have all the right answers.

Another woman, a brave one, said, “I always have to have them break it down, get straight to the point. Put it in layman’s terms. I didn’t go to school with you, and I don’t understand what that word was you just said. Could you please tell me in basic English, what are we going to do and what’s going to happen?”

Others said they wished they could question their doctors more. But sometimes, if they did, the physicians initiated disciplinary action against them. However, as one of the incarcerated women said, “More punishment is not going to make what the doctor says more clear; it’s just more punishment.”

Women in the groups expressed the problem in basic terms: “You sometimes gotta talk to me like a child. Don’t talk to me like I’m a professor. Break it down, be simple with me. I’m a simple person with a complicated disease.”

Simple Answers to Difficult Healthcare Questions—Choice grew out of comments like these. Meeting participants defined the kinds of information and resources they needed to improve their health care. This material formed the backbone of the handbook. Once I completed a draft, I reconvened several focus groups to review and field-test it and to make suggestions or revisions.

The participants shared one desire: to understand more about their illnesses or conditions. One said, “I just wish you could step into my body for a minute and see what I’m feeling and then you would understand the helplessness I feel.”

Another expressed her desire for care and collaboration: “I look for someone who will talk to me and tell me, ‘I don’t know all the answers, but we’ll find out together.’”

And another woman defined her vision of proper, dignified health care: “I like my doctor to be my teammate…I just want him to know I’m smart and we can talk about this…getting him to recognize that I’m a person and I have a problem that I would like him to hear.”

Conducting the focus groups gave me a clearer understanding of what incarcerated women face in making decisions about medical care and treatment. For example, incarcerated women pay five dollars for every doctor visit yet earn only eleven cents per hour of work. They are allowed to list only one health problem or issue even if they have several. They wait for long periods in the clinical area and may not get in to see a doctor. They face language barriers in seeking to communicate with health care providers. They are given orders for laboratory tests or medical procedures without receiving a clear explanation of their purpose.

Our focus group discussions followed a predetermined set of questions in four areas: knowledge/information, experience/process, barriers, and outcomes.

We asked, “Who do you trust with your questions about health care? Women cited a number of sources of trust, but they did not name the medical staff in the prison. They tried to get good information by:

(p.261)

  • Talking to family members and friends outside the institution

  • Having family members or friends send materials from the Internet

  • Talking to other inmates (peer counselors, WAC)

  • Using resources in the medical library such as medical dictionaries and the Physicians’ Desk Reference

  • Watching medical programs and commercials on TV

Many of the women had been inside for so long that they were not aware of something called “managed care.” They learn about medical issues on television or via information that family and friends mail to them. A significant number of women reported being afraid to take some of the medications that had been prescribed because the advertisements on television talked about “bad side effects.”

In summary, the women named the following obstacles or barriers to receiving health care in the institution:

  • Feelings of helplessness, intimidation, confusion, shame, guilt, or embarrassment

  • Fear of finding out what’s wrong

  • The sense that asking questions is not culturally appropriate

  • Terminology they do not understand

  • Fear of being perceived as “dumb”

  • Fear of further punishment if they assert themselves

  • Uncertainty about what or how to ask

The participants wanted the health care handbook to include information about these matters:

  • Definition of common terminology and how to use it

  • Descriptions of types of specialists and specialties

  • Specific examples of diagnostic tests and procedures

  • Descriptions of the risks of common tests and procedures

  • Information on where to find information and how to use it

  • Frequently asked questions and how to ask them

  • A list of informational resources

  • Description of what will happen to their bodies

  • Information about advance health care directives and hospice services

While conducting the focus groups, working with the participants, and listening to how they expressed their needs, I learned that the women at CCWF support each other and have a bond that goes beyond race, ethnicity, and educational level. These women form “families” to take care of and advocate for each other. Older women are the “grandmas,” “mothers,” or “aunties” to the younger women. Race or (p.262) ethnicity, at least among those who took part in the groups, was not an issue for taking care of each other.

These women were supportive of each other. For example, African Americans spoke up for their Hispanic/Latina counterparts (for example, supporting the translation of information into Spanish if necessary). They found ways to get around language barriers and to stand up for and protect one another. Some of the women of varying races/ethnicities had developmental disabilities. Other group members consistently assisted them in the consent process or helped answer their questions. In several groups, I heard essentially the same message: “I worry about my Hispanic sisters. If I don’t understand it, how can they?”

I learned that these women are resilient. They are determined to survive in this environment despite the most difficult circumstances. I learned that they want to ask questions about their illnesses and conditions, yet many have a hard time expressing themselves or are fearful of “looking stupid.”

Here are examples of what the participants want from their doctors.

  • “Can you just stop for a moment and look at me? Maybe if you look in my face you will hear me better.”

  • “I want him to look me in the eye. He can look in my chart, but then put the thing down. Look me in the eye and answer me the best he can.”

People facing illness, whether on the outside or inside the walls, wish their physicians would look them in the eye. But those on the inside are fighting a special uphill battle.

My work on this project showed me that these women are skillful problem solvers who find creative ways to get their needs met. One woman offered her method of remembering the doctor’s statements: “Always take a paper and pencil, write down as much as possible to look over later…The faintest of ink is better than the best memory.” She had just completed chemotherapy and radiation for breast cancer.

Another woman reported using a technique she calls “trick-o-lation” with her doctor. When we asked her to define that word, she explained that she has both HIV and hepatitis C. Sometimes she has new, strange, or unusual symptoms. She asks her mother or sisters to look them up on the Internet and then send her any articles that relate to her symptoms or possible treatment. She gives them to her doctor at her next appointment. The doctor puts the articles aside and proceeds with the medical appointment. The next time she sees her doctor, he says, “I found this article [the one she had brought in], and it seems to match your symptoms. Perhaps we can try this treatment and see how you do.” She said, “You have to trick-o-late him into thinking it was his own idea.”

Although some of the women felt they might be perceived as “stupid” if they asked questions, one was self-assured enough to report, “Like I said, I’m a hands-on person; not really smart when it comes to words, but I know how to get what I need.”

(p.263) Each time I leave the prison setting, I feel an overwhelming sense of liberation. I can walk to my car; listen to my radio; drive home to my family; watch TV; eat what, where, and when I want; go to the movies; and talk on my cell phone. I cannot imagine being unable to step outside into the “free” world; fearing I will not get the medical care I need, being afraid to ask questions about my diagnosis or treatments, or going through a serious illness with no family nearby to care for me.

Finally, through the process of developing Choice, I learned that I am more of an activist/advocate than I ever imagined, though my methods may be less vocal than some. I have a strong desire to improve care for vulnerable people through this small contribution. My next steps will be to reconnect with CCWF and make Choice available to the wonderful women whose perspectives helped make it possible.

Notes:

This article appeared in slightly different form as “End-of-Life Care in the Prison System: Implications for Social Work” in Living with Dying: A Handbook for End-of-Life Healthcare Practitioners, ed. Joan Berzoff and Phyllis Silverman (New York: Columbia University Press, 2004) and as “An Approach to Stimulate Effective Decision Making in Medical Treatment, Advance Care Planning, and End-of-Life Care for Women in Prison” in Journal of Palliative Medicine 8, no. 2 (2005): 432–39.