Woman-Care for those with Disabilities
By Sherry Bushnell and Dr. Anne Camber, OBGYN
Research for this article came from a publication called Special Populations, published by the American College of Obstetricians and Gynecologists. www.acog.org and
a web-based publication called Table Manners and Beyond: the gynecological exam for women with developmental disabilities and other functional limitations. See contact info at bottom of article.
Women with disability may have special obstetric and gynecological needs that require a doctor with understanding, skill and sensitivity/ flexibility. As parents, our relationship with our child's physician should be based on mutual trust. We should sense in them a real interest in our children and our ability to give good care. Your doctor should be concerned about not causing harm, emotional or physical.
According to the American College of Obstetricians and Gynecologists, women with disabilities often undergo screening for cervical cancer and breast cancer less frequently than recommended. In a recent study in one Bay Area county, a survey of women with disabilities found that only 20 out of 450 women 18 years or older had EVER had a Pap test. Even more troubling, only 3 out of 70 women over the age of 50 had ever had a pelvic exam. When proven prevention services are reduced... there is an increase in serious health problems. It is our feeling that as caregivers of a person with disability, and as parents of adult special needs women, in our hands is the ability to make sure adequate care is given.
There are challenges that women with disability need to overcome, to receive even routine care. These can be positioning (even getting onto the exam table), technology, understanding of the nuances of a particular disability and women care, communication and intellectual barriers, a misunderstanding of desire for sexual relationships (or absence of) and childbearing.
A physician's sensitivity toward a disabled person's mental or physical inability can be really appreciated by a patient when she feels that her doctor "understands". This means they have taken the time to tailor-make ongoing care suited for each client and their caregiver. This might include different medication routes and routines that don't require remembering daily (like every 8 hour) administration of medication. Because of the sometimes incredible logistics of travel, just to get to an appointment, ordinary follow up appointments can be a real hassle. Are they really needed? If so, then by all means, make the date. If someone can make a home visit to check stitches or review progress, then care should be taken by the physician to take this into consideration.
Orientation to the idea of an Exam - If your daughter is going to be anxious (or maybe you are!) education can help her (or you) relax. This should ideally take place before the day of the exam itself. It should include:
• A discussion about the importance of the pelvis, the pelvic and breast exam for good health.
•Illustrations of the exam procedure using models, pictures and videos
• Talking about what is going to happen, and perhaps being able to look at or touch something like the speculum or a cotton swab
•A tour of the clinic and the friendly people who work there
•An opportunity to role play to a certain extent. This can be with patient and mom at home, patient and doctor in the office or dolls. This allows a time for fears or concerns to surface about positioning or touching.
Questions regarding Sexual Abuse - In many circles of disability-friendly physicians, there may be an assumption that sexual relationships are a part of our disabled adult child's life. As a Christian, we might find this offensive if our children are not married, but let's not get bent out of shape. Look at this as a positive step toward people allowing disabled persons equal rights. We all appreciate that! This is where careful choosing of our physician can be wise. If you live in a populated area and have to choose a new health care person, consider permanent guardianship for your child over 18 years of age. What To Do When Your Disabled Child Turns 18: Conservatorship or Guardianship? Unless your child has a permanent guardian, they are expected to make their own decisions. Are you able to give consent for your child's treatment?
Women with disabilities statistically are more at risk for abuse by attendants or health care providers. Many women with physical or mental disabilities rely on someone for most of their needs. This can put them in a position to be abused, even when they don't understand they are being abused. For your information, these are questions that your adult child may be asked:
•Within the last year, have you been hit, slapped, kicked, pushed, shoved or otherwise physically hurt by someone?
•Within the last year, has anyone forced you to have sexual activities?
•Within the last year, has anyone prevented you from using a wheelchair, cane, respirator, or other assistive device?
•Within the last year, has anyone you depend on refused to help you with an important personal need, such as taking your medicine, getting to the bathroom, getting out of bed, getting dressed, or getting food or drink?
Pregnancy Limitations: If you are working with an adult disabled pregnant mother, in order to avoid questions from child protective services about the child-caring ability of the birth mom, it is best to address parenting issues during prenatal care. Many moms that have special needs can parent, with community support or the assistance of their care-giver. A functional limitation is defined as being unable to do any of the following:
Lift 10 pounds
Walk up 10 steps without resting
Walk 1/4 of a mile
Stand for approximately 20 minutes
Bend down from a standing position
Reach up over the head or reach out
Use fingers to grasp or handle something
Hold a pen or pencil
Women with cognitive disabilities that create barriers to parenting, will need to have help forming a parenting plan for their child, if they are able. Honest evaluation and careful consideration should prompt a caregiver to go over options such as adoption, co-parenting, or custody/ permanent guardianship of the child.
Here are some suggestions you might want to look for in a doctor's office that is disability-friendly. Remember, an office that is totally decked out to accommodate people with special needs may be nice, but an understanding, knowledgeable doctor, even without the fancy office can be a real blessing too.
Scheduling - If travel to the office is a major undertaking, is the office flexible regarding appointments? Many physician offices have tightly scheduled appointments. If you have to cancel last minute because of whatever reason (and you should call of course!), will they penalize you? What if you have to cancel more than once?
•Are they interested in finding out how to accommodate your child's individual needs or do you get the feeling it is a hassle?
•Can your adult child use their standard equipment (exam table, tools, bathroom accessibility)?
•Is the doctor open to having a pre-consultation with you, before the actual appointment, to communicate with you about how to best meet the needs of your child? Your child's medical records should have already been sent ahead of time, and you should have a list of topics to discuss, so the doctor's time is productively spent.
•Will you be allowed to accompany your child in the room for procedures?
•If your adult child will be asked questions regarding their medical history, possible abuse, or decisions about care, can they have an appropriate representative present?
•Does the doctor have information that might explain procedures or educational resources that will help with understanding?
•Most importantly, do you trust your physician and do they have the patience it might take to work with you and your adult child?
• If multiple procedures, examination or screenings need to be done, and sedation or anesthesia is required, is there a coordination with medical colleagues to conduct them at the same time?
Do we know what we are doing?
There hasn't been much research done in the area of reproductive health care and women with disabilities. What about the risks of using certain hormone therapy or oral contraceptives and the risk of deep vein blood clots? (Lack of mobility already puts them at risk for blood clots in their legs.) What is the best way to combat osteoporosis in women who are mobility impaired? How does pregnancy affect a woman who cannot get around and what are the effects of pregnancy with her particular special needs (such as spina bifida)?
Women with disabilities should be regarded as experts in how their body functions. In the event an adult is not able to be the expert on herself, parents providing care for an adult child with disability should be regarded as the next best expert. You know her needs, her ability, her expectations, her fears, her idiosyncrasies and what her reactions will be to specific treatments or procedures.
Reducing Anxiety: suggestions for your doctor
Screening for cancer
Women with special needs are not as likely to get appropriate woman care screening for such things as breast or cervical cancer. It is reported that women with functional limitations have fewer Pap tests and may not have mammogram screening.
Breast Cancer: Breast cancer is the second leading cause of death from cancer among women. One in eight women will develop breast cancer during her lifetime if she lives to age 90. Not having children is a risk factor for breast cancer. Women with developmental disabilities are living longer than in years past and many times they don't have children, and are therefore at risk for developing breast cancer.
Women with limited upper body mobility or a lack of dexterity may be dependent on a caregiver to perform breast exams. There are techniques and modifications that can assist an adult with special needs to get the routine care most women without disability would consider normal. Mammography remains the best screening procedure for finding early breast cancer. Go to Breast Health Access for Women with Disabilities www.bhawd.org to read about some new mammography tools and adaptative methods.
Cervical Cancer: women who cannot get on an exam table without a lot of help, are much less likely to get regular Pap smear tests. There are exam tables that lower to make getting from wheel chair to exam table easier. Sometimes manipulating or positioning a woman into positioning for a pelvic exam can cause a disabled woman to have a bowel movement or urine let go... or spasticity can be caused by specific positioning. The stirrups might be out and another position more conducive to the exam. Whenever possible, decide about positioning BEFORE the exam, you and doctor together. Here are some suggestions:
•Knee-Chest - No stirrups needed. Good for women who need to lie on their side.
•Diamond-Shaped Position - Again, no stirrups needed. A woman must be able to lie flat on her back. Speculum inserted with handle up.
•V-Shaped Position - May or may not use stirrups. Woman lies flat on her back with her straightened legs spread out wide to either side of the table. Or one is straight and the other in a stirrup. Handle up. Two assistants are needed to support each straightened leg.
•OB Stirrup position (supporting knees)
•M- Shaped Position - No stirrups needed. Allows the patient to lie with her entire body supported by the table. Alternate Positions For Pelvic Exam
Pap smears require access to the cervix, and so a speculum is usually a must. There is such a thing as a "blind" pap smear, but the reliability is questionable. Between you, your disabled child and your doctor, are you able to make it happen? ACOG recommendations for Pap smears have changed. Be sure you are not having more done than what you need.
Women who are mentally disabled may not be able to understand why they are having to expose themselves in a weird gown to a stranger. If dressing and undressing is an issue, consider easy clothing to get on and off from home instead. As a caregiver, it might help to have a friendly meeting with the doctor, in a relaxed setting, before the actual examination or procedure. BEFORE getting undressed. Consider having the doctor have some fun conversation regarding interests (you might clue the physician in at your first meeting what those are!) with your child to put her more at ease. Have the physician continue the fun conversation during the exam to keep up the familiar environment to help calm possible stranger anxiety.
If a urine sample is needed and potty on command is not easily done, consider picking up a sample kit a head of time and getting it done at home. If there are going to be lab tests done, get the blood drawn all at once, even if it means a delay for diagnosis, if it is not an emergency.
If the visit is not going well, unless it is an emergency, opt to try again, versus physical restraint or a making bad experience. Remember, doctor visits are a part of your child's life forever. One bad experience can make your special needs child wary of all doctors. Bring a special treat, a loved toy or a comforting article, to make the visit as "normal" as possible.
What about those periods?
Some families find working through their adult child's monthly cycle to be just part of life. The woman is able to master a majority of her own care, with supervision. This is probably best, from a natural hormonal health standpoint, but sometimes problems arise. There are options for women with disabilities who, through assessment, have decided that monthly period management is a big deal, creating problems in hygiene and emotional or physical health. Heavy bleeding, mental anguish due to the sight of their own period blood, severe mental disorders made worse by monthly emotional swings, women that are at risk for getting pregnant, all might qualify for sensitive and appropriate contraception, even though they are not having sex.
Here are some options:
Sterilization: Federal, state and local laws differ on this subject. These laws protect, but can also limit their reproductive options. Just because a person is mentally disabled, does not, in the eyes of the law, justify permanent sterilization. If your child cannot truly give consent, federal funding will not pay for sterilization. Good communication and understanding should be in place, so that you as a caregiver understand the long term risks. If permanent sterilization is chosen, consider "hiding the scar" in the belly button so they cannot be identified as "sterilized" by a predator, if your adult child works or is active in the community.
Endometrial Ablasion - Under general anesthesia, a device is used to burn off the lining of the uterus to stop menstrual bleeding. It is done through the vagina and can be a good alternative to medication.
Oral Contraceptives: Although most times used for pregnancy control, this medication can also be used for cycle control. It can decrease the menstrual flow, reduce severe pain with menstruation, and decrease bleeding episodes in a year. However, taking pills once a day may require daily help from a caregiver. Someone who would not want to take oral contraceptives would be a woman who has cardiac or vascular flow problems (like in a woman with Down syndrome). The use of seizure medication reduces oral contraceptive effectiveness.
Non-oral hormonal: monthly injection, a transdermal patch changed weekly, or a vaginal ring that needs insertion and monthly changing. Menstrual cycle is expected in the fourth week. Same advantages as oral contraception such as cycle control, less bleeding, less pain.
Intramuscular Medroxygrogesterone - A popular choice for women with disabilities because it is easy to take, very effective and lasts 3 months. At first there is irregular bleeding, but after awhile, complete stopping of menstrual flow is likely. Be careful with this method if woman is non-weight bearing. Some studies show reduced bone density with prolonged use.
IUDs (Intra Uterine Devices) - The levonorgestrel intrauterine device is a flexible, plastic, T-shaped device with a reservoir of progesterone and may be left in place for 5 years. An advantage of this system for women with physical and mental disabilities, is that following the first few months of insertion, menstrual bleeding is greatly reduced and some women stop completely. It does need to be checked periodically, with a quick vaginal exam to feel for placement, but is easy to do.
Teenage women with physical or mental impairments may not get adequate education or guidance regarding what is happening when their period starts, and about their bodies. In part, it may be because mental limitations make explanations harder to comprehend. Also, talking about her "period" may happen inappropriately in public. We all know how easily that happens! It may be more wise to teach as the specific moments come to pass. If you have an adult daughter that can comprehend what is happening, then working with books, pictures and posters in her room might help feel like she is more normal, when the time comes.
As our daughters become of age to start their period, we also might see behavior changes or concerns. For teenagers that are mentally disabled and not able to comprehend what is happening, working together as a family makes life smoother during this time. Older and wiser sisters can help keep an eye out for when a period starts. Mom helps train daughter how to clean, apply and dispose of pads. (Tampon use is not recommended). We use paper lunch bags to enclose the pad, fold down the top, and then place the whole bag in the trash. (No, we don't use paper lunch bags for taking a lunch to work or school).
Dad and brothers need to be more understanding and help keep an eye out for overflow in times of heavy bleeding. A positive and respectful attitude as a whole family toward a child with disability during her cycle can smooth out the tension and make it just part of life, instead of a nightmare each month.
Hygiene: It is important to help our daughters keep clean and will probably be easiest if a shower morning and night is given on heavier days. We use extra large size pads, regardless of the flow, to help with consistency. They are easier to put in place in adequate size panties and can be a catch-all for a mispositioned pad.
Keep a calendar. If your daughter is regular, then plan accordingly. Keep her close to home on those days that you know are going to be more stressful for her.
Our own attitudes are reflected in our children's attitudes. If we are matter-of-fact, then our daughters will be too.
Curriculum for teaching disabled women about woman health - The North Carolina Office on Disability and Health (NCODH) works to promote access to health care by providing training and technical assistance to health care providers and caregivers. It developed Woman Be Healthy: A Curriculum for Woman with Mental Retardation and Other Mental Disabilities in 2002. It enables women who are mentally disabled to become more active participants in their health care. Primary emphasis is on teaching women about reproductive health and breast/cervical cancer screenings. The manual is free to all North Carolina residents. Out of state residents may order one free copy. E-mail firstname.lastname@example.org to order. A sample of the curriculum pages can be seen at http://www.fpg.unc.edu/~ncodh/WomensHealth/Week2.pdf
Table Manners and Beyond: the gynecological exam for women with developmental disabilities and other functional limitations. - A web based resource that is totally useful for parents in preparing or getting ideas for their adult daughter's medical exam. http://www.bhawd.org/sitefiles/TblMrs/cover.html