9/28/2005 2:30 PM
A Providers Guide for the Care of Women with
Physical Disabilities and Chronic Health Conditions
Suzanne C. Smeltzer, RN, EdD, FAAN
Professor, Villanova University College of Nursing
Nancy C.
Sharts-Hopko, RN, PhD, FAAN
Professor, Villanova University College of Nursing
North Carolina Office on Disability and Health
in collaboration with Villanova University College of
Nursing
Dedication
This revision of A Providers Guide for the Care of Women
with Physical Disabilities and Chronic Health Conditions is dedicated to
Sandra L. Welner M.D. for her tireless efforts to improve the health care of
women with disabilities. Dr. Welner's
genteel advocacy explored and explained unique problems facing women with
disabilities from contraception, infections, bleeding and/or estrogen replacement to those
seeking enjoyable sexuality, those suffering sexually transmitted diseases, or cervical
/ breast malignancy. She was a master of idealistic problem solving, with an
incredible eye for detail. Welner contributed to women's health on a much
broader scale through her committee work with various agencies, from the US
Department of Health and Human Services and the Center for Disease Control, to
states' health departments and health care institutions such as the American College of Obstetrics and Gynecology.
These organizations' policies for caring for those with disabilities were
shaped directly by Dr. Welner. She lectured all over the world at university
grand rounds and conferences, and invited special sessions at venues as notable
as the United Nations. Recognizing that women with disabilities may skip
important medical follow-up because mobility problems can make doctors' appointments
an ordeal, Dr. Welner designed the first universally accessible examination
table for women with disabilities. The Welner Table is found in facilities
around the world. It reflects the necessary sensitivity to accessible care at
the level of the examination room beyond mere ramps and wide elevators. Her
legacy endures in the medical centers she inspired and in the patients she
cared for. (Welner Enabled; http: www.welnerenabled.com/legacy.html)
This guide is also dedicated to
women with disabilities who have taught us in numerous ways the importance of
recognition, sensitivity, and dignity in all their health care encounters.
Credits
Authors
Suzanne C. Smeltzer, RN, EdD, FAAN
Professor & Director, Nursing Research
Director, Health Promotion for Women with Disabilities Project
Villanova University College of Nursing
800 Lancaster Avenue
Villanova, PA 19085
Phone: 610-519-6828
Fax: 610-519-7650
E-mail: suzanne.smeltzer@villanova.edu
and
Nancy C. Sharts-Hopko, RN, PhD, FAAN
Professor & Director, Doctoral Program
Villanova University College of Nursing
800 Lancaster Avenue
Villanova, PA 19085
Phone: 610-519-4906
Fax: 610-519-7650
E-mail: Nancy.sharts-hopko@villanova.edu
Developed by the North Carolina Office on Disability and
Health, a partnership between the North Carolina Division of Public Health of
the Department of Health and Human Services and the FPG Child Development
Institute at the University of North Carolina at Chapel Hill
in collaboration with Villanova University College of Nursing.
2005
The information provided in this material was supported by
Grant/Cooperative Agreement Number U59/CCU419404 from the Centers for Disease
Control and Prevention (CDC), National
Center on Birth Defects
and Developmental Disabilities. The
contents are solely the responsibility of the authors and do not necessarily
represent the official views of CDC
Acknowledgements
The authors of this guide would like to acknowledge the
reviewers who provided excellent comment and feedback to us. Their feedback
enabled us to make the content contained in the Providers Guide relevant to
clinicians and to the health care needs of women with disabilities.
Alicia Conill, MD
CEO and Medical Director
Conill Institute for Chronic Illness
Clinical Associate Profess of Medicine
University of Pennsylvania
Pam Dickens, MPH
Womens Health Coordinator
NC Office on Disability and Health
University of North Carolina at Chapel Hill
Cathy Kluttz-Hile, BSN, CDDN, MA
Specialized Services Unit Manager
Division of Public Health
NC Department of Health and Human Services
Sefi Knoble, MD
Medical Director
Inglis House/Inglis Innovative Services
Clinical Assistant Professor of Medicine
Drexel School of Medicine
Karen Luken, MS, CTRS
Project Director
NC Office on Disability and Health
University of North Carolina at Chapel Hill
Lori L. Rowlett, PhD
Associate Professor of Religious Studies
University
of Wisconsin at Eau Claire
Table of Contents
Page
Dedication
Credits
..
Introduction
.
Barriers to Access
Health Promotion and Wellness
..
·
Screening Tests and Immunizations
Guidelines
..
·
Immunizations
.
Pelvic Examination
.
Cancer Screening
Sexuality
.
Menstrual Self Care
Contraception
.
Pregnancy
...
·
Preconception Care
·
Prenatal Care
..
·
Labor and Delivery
·
Breastfeeding
.
·
Unique Considerations
..
Infertility
...
Infection
·
Urinary Tract Infections
·
Vaginitis
·
Sexually Transmitted Diseases
..
·
Pressure Ulcers
..
Menopause
Bladder and Bowel Dysfunction
.
Osteoporosis
Violence and Abuse
Psychological / Mental Health Issues
.
Conclusion
..
References
..
Appendices
·
A:
Organizations
.
·
B:
Interacting with Persons with Disabilities
·
C: Ten
Behaviors to Good Health
..
·
D: CDC Adult Immunization Guidelines
A Providers Guide for the Care of Women with
Physical Disabilities and Chronic Health Conditions
Over 30 million women, or more than
20% of women, in the United
States have a disability. These disabilities
range from relatively mild limitations requiring little or no need for assistive aides or devices to significant disabilities
necessitating substantial care and advanced technology to enable mobility,
self-care and breathing. Disabilities may be physical, sensory, developmental,
intellectual, or psychiatric in nature or a combination of these. While there
are many definitions of disability, there is general agreement that disability
is a limitation in a major activity, caused by a chronic health condition (Jans
& Stoddard, 1999). Despite
even significant disabilities, most women who have a disability are expected to
have a normal or near-normal life span (Vandenakker & Glass, 2001). Thus,
health care, including preventive health screening, is essential to enable them
to live with the highest quality of life within the limitations related to
their disability or chronic health condition. Women with disabilities have the
same needs for health care and preventive health screening as all women.
This
guide is designed for clinicians to improve knowledge and practice in providing
care to women with physical disabilities and chronic health conditions. The
guide reviews strategies for management as well as specialized approaches.
While the first sections focus on access to general medical care and removing
common barriers, other sections cover the pelvic exam, cancer screening,
contraception, pregnancy, menopause, aging, health promotion, as
well as other critical components of comprehensive
reproductive health care. Viewing the woman with a disability as a woman first,
who happens to have physical differences, will give us a better understanding
of how her disability affects her health and how her health affects her
disability. Recognizing that she is the person most knowledgeable about her own
disability will foster effective provider-patient relationships and more active
participation in self-care and health promotion.
Barriers to Access
Although the American with
Disabilities Act (ADA) of 1990 was enacted more than 15 years ago to assure
equal access to persons with disabilities, women with disabilities continue to
encounter and report multiple barriers to health care services and providers
(Nosek, 2004). These barriers can be environmental (absence of ramps,
inaccessible health care facilities), informational (lack of alternate formats,
high reading level), communication (lack of TTY, video relay services, sign
language interpreters), or attitudinal (negative perceptions and stereotyping
of persons with disabilities). Other barriers to health care and preventive
screening encountered by women with disabilities include transportation
difficulties, inability to pay because of limited income, difficulty finding a
health care provider knowledgeable about care for people with their particular
disability, previous negative experiences, reliance on caretakers, and the
demands of coping with the disability itself (Nosek et al., 1997). Lack of
emotional support from significant others and lack of attention to general
health among women living in institutions (Better Health Channel, 2004) are
also significant concerns.
Women with disabilities do not
differ from other women in their need for pelvic examinations and other health
screenings. The National Study of Women with Physical Disabilities (Nosek et
al., 1997) revealed that women with disabilities are significantly less likely
to receive pelvic exams at least every two years than women who do not have
disabilities. In addition, the more severe their physical disabilities, the
less likely women were to have regular pelvic exams. Minority women with disabilities were also
less likely to have regular pelvic exams. The most frequent reasons women gave
for not having regular pelvic exams included difficulty getting onto the exam
table, being too busy, and inability to find a physician who suited them.
Additional reasons included the belief that they did not need pelvic exams
because of their disability, inability to find a health care provider
knowledgeable about their disability, difficulty in accessing the office or
clinic, and finding transportation. These findings have been corroborated in
other studies (Coyle et al., 2002; Odette et al., 2003; Schopp et al., 2002;
Veltman et al., 2001). Iezzoni and associates (2001) have observed that while
women with disabilities, in general, receive screening and preventive services
at rates comparable to all women, those with mobility limitations had much
lower rates of having gynecological exams. Data from the Centers for Disease
Control and Prevention (CDC) have also indicated that women 65 years of age and
older with functional limitations are significantly less likely to have Pap
tests and mammograms than younger women (Thierry, 2000).
Because of
the persistence of barriers to accessing services, it is essential that health
care providers take steps to ensure that their offices and other health care
facilities used by those with disabilities are accessible. Ensuring access includes removal of
structural barriers by the addition of ramps, designation of accessible parking
spaces, and modification of restrooms to make them usable by women with
disabilities. Alternate communication methods (e.g., sign language
interpreters, TTY text telephones, assistive listening devices) and alternate
formats of patient education (e.g., audiotapes, large print, Braille) are
essential to provide appropriate health-related information to women with
disabilities. These reasonable accommodations fall within the guidelines of the
Americans with Disabilities Act (ADA), which requires their provision without
cost to the patient.
In addition, health care providers
may underestimate the effect of a woman's physical disability on her ability to
access health care, including health screening and health promotion. Further,
health care providers may focus on the woman's disability while ignoring her
general health issues and concerns (Nosek et al., 1997).
Health Promotion and Wellness
General health screening recommendations for all women apply to
women with disabilities. Although physical limitations resulting from a
disability and barriers in health care facilities may make it difficult for
some women to obtain health care and preventive health screenings, the presence
of a disability should not be used as a reason to defer or neglect recommended
screening. Rather, the presence of a disability may increase the need for
screening and follow up. Various federal and state agencies have established
general health promotion guidelines, and these guidelines may vary
slightly. One federal agency, the National Womens Health Information
Center (2004), has
developed recommendations for health screening for all women (Table 1);
these include specific issues that pertain to all women, including women with
disabilities. However, based on a womans health
and her disability, some screenings may be recommended sooner, more often, or
not at all. Each woman should be considered individually.
Table 1: Screening
Test Guidelines for Women (National Womens Health Information
Center, 2004
|
Screening Tests
|
Ages 18-39
|
Ages 40-49
|
Ages 50-64
|
Ages 65+
|
|
General Health: full checkup including weight and height
|
Discuss with health care provider
|
Discuss with health care provider
|
Discuss with health care provider
|
Discuss with health
care provider
|
|
Thyroid test
|
Start at age 35, then every 5 years
|
Every 5 years
|
Every 5 years
|
Every 5 years
|
|
Heart Health: Blood
pressure test
|
Start at age 21, then once every 1-2 years if normal.
|
Every 1-2 years
|
Every 1-2 years
|
Every 1-2 years
|
|
Cholesterol test
|
Discuss with health care provider.
|
Start at age 45, then every 5 years
|
Every 5 years
|
Every 5 years
|
|
Bone Health:
Bone mineral density test
|
|
Discuss with health care provider.
|
Discuss with health care provider.
|
Get a bone density test at least once. Talk
health care provider about repeat testing.
|
|
Diabetes: Blood
sugar test
|
Discuss with health care provider.
|
Start at age 45, then every 3 years.
|
Every 3 years
|
Every 3 years
|
|
Oral Health:
Dental exam
|
One to two times every year
|
One to two times every year
|
One to two times every year
|
One to two times every year
|
|
Reproductive Health:
Pap test and pelvic exam
|
Every 1-3 years if woman is sexually active or is older
than 21
|
Every 1-3 years
|
Every 1-3 years
|
Discuss with health
care provider
|
|
Chlamydia test
|
If sexually active, yearly until age 25
|
If woman is at high risk for chlamydia or other sexually
transmitted diseases, may need this test.
|
If woman is at high risk for chlamydia or other sexually
transmitted diseases, may need this test.
|
If woman is at high risk for chlamydia or other sexually
transmitted diseases, may need this test.
|
|
Sexually Transmitted Disease (STD) tests
|
Talk to health care provider if woman or partner has had sexual contact with another
person or persons or if either has had a STD.
|
Talk to health care provider if woman or partner has had sexual contact with another
person or persons or if either has had a STD.
|
Talk to health care provider if woman or partner has had sexual contact with another
person or persons or if either has had a STD.
|
Talk to health care provider if woman or partner has had sexual contact with another
person or persons or if either has had a STD.
|
|
Breast Health:
Mammogram (and annual clinical breast exam)
|
|
Every 1-2 years.
Discuss with health care provider.
|
Every 1-2 years.
Discuss with health care
provider.
|
Every 1-2 years.
Discuss with health care
provider.
|
|
Colorectal Health:
Fecal occult blood test
|
|
|
Yearly
|
Yearly
|
|
Flexible sigmoidoscopy (with fecal occult blood test) is
preferred
|
|
|
Every 5 years
|
Every 5 years
|
|
Double contrast barium enema (DCBE)
|
|
|
Every 5-10 years (if not having colonoscopy or
sigmoidoscopy)
|
Every 5-10 years (if not having colonoscopy or
sigmoidoscopy)
|
|
Colonoscopy
|
|
|
Every 10 years or sooner if abnormalities warrant more
frequent monitoring.
|
Every 10 years or sooner if abnormalities warrant more
frequent monitoring.
|
|
Rectal exam
|
Discuss with health care provider.
|
Discuss with health care provider.
|
Every 5-10 years along with
screening (sigmoidoscopy, colonoscopy, or DCBE)
|
Every 5-10 years along with screening (sigmoidoscopy, colonoscopy, or
DCBE)
|
|
Eye and Ear Health:
Vision exam with eye care provider
|