Carrie Case Information Points
Preparing Office Staff
Interacting with Persons with Disability
Importance of Establishing Rapport
Legal Issues Surrounding Guardianship/Informed Consent
Reproductive Healthcare History
Evaluating the Level of Sex Education
Sexuality and Self-Determination
Reproductive Management/Contraception
Breast Self-Examination (BSE)
Sedation and General Anesthesia
Endometriosis
Sexual Abuse
Sexually Transmitted Disease
Preparing Office Staff
Many individuals are apprehensive about medical care due to a variety
of factors, including previous experiences with clinicians, parental influences,
or innate fear of the unknown. Individuals with intellectual disabilities
are no exception, and in fact may be more frightened due to lack of exposure
to care, painful physical conditions, or difficulty at times in understanding
the purpose of medical treatment. Reception personnel are typically the
first contact for patients with disabilities, and are in a unique position
to make a welcoming first impression.
The primary care provider should make a careful assessment of the patient’s
cognitive and developmental levels in order to facilitate the appropriate
level of communication. Medical office staff should be educated/prepared
concerning specific issues that may arise when providing care to individuals
with developmental disabilities. These issues include the need for flexibility
in scheduling, flexibility in positioning, potential behavioral interventions,
and the need to convey an attitude of patience and respect. It is particularly
important that the clinician emphasize to the reception staff the need
to schedule more time for individuals with special needs. This simple
accommodation will save valuable time in the long run.
Many individuals with intellectual disabilities may benefit from a gradual,
desensitizing approach to medical care. By this, we mean that cooperation
may best be gained by utilizing some preliminary techniques - such as
reading “social stories” describing what will happen, modeling,
and/or scheduled “warm-up” visits to the primary healthcare
provider before the day of the actual appointment. For an example of a
social story, see the Resource Document “Social Stories: A Woman’s
Health Example” in the Resource Section at the beginning of this
module.
LINK DOES NOT WORK:
Practical oral care for people with Down syndrome (n.d.). Retrieved June
17, 2005 from
http://www.nidcr.nih.gov/HealthInformation/DiseasesAndConditions/
DevelopmentalDisabilitiesAndOralHealth/PracticalOralCareforPeople
WithDownSyndrome.html
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Interacting with Persons
with Disability
Many persons without disabilities feel uncomfortable around individuals
with disabilities. Although the ADA removes many barriers, the law cannot
eradicate invisible attitudinal hurdles. Sometimes, individuals avoid
people with disabilities or exhibit awkwardness towards them. Much of
this discomfort stems from misunderstanding and lack of contact with people
with disabilities. There are several steps that can be taken to help ease
a sense of awkwardness. These include the following:
- Feel free to offer assistance to a person with a disability or ask
how you should act or communicate, but do not automatically assume that
the person needs assistance.
- Look directly at an individual with a disability when addressing him
or her, even if a companion or sign language interpreter is present.
- Adults should always be treated as adults.
- Do not assume that a person with a disability is more fragile or sensitive
than others.
- When meeting a person with a visual impairment, always identify yourself
and anyone else who may be with you.
- When conversing with a wheelchair user or a person of short stature,
try to be seated to facilitate eye contact.
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Importance of Establishing
Rapport
Primary care providers may need to invest additional time, while conveying
a competent and relaxed demeanor, when attempting to build rapport with
individuals having an intellectually disability. It may prove challenging
for the clinician to establish a trusting working relationship with women
with intellectual and/or developmental disabilities who may have experienced
emotional, physical, and/or sexual abuse.
Research indicates that patients treated with respect, dignity, and empathy
are typically better satisfied with healthcare provision. The adage, "talking
saves time" is really true. When the clinician takes extra time to
communicate and build rapport with his or her patient and/or caregiver,
valuable information is gained which saves time in the long run. It is
the clinician's duty as a professional to convey an image of both competency
and empathy.
Establishing communicative rapport is an integral part of the clinician/patient
relationship. Many medical personnel have received little training toward
the development of this important component of practice.
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Legal Issues Surrounding
Guardianship/Informed Consent
Guardianship is established by a legal proceeding in which a court determines
if the severity of a person’s disability renders the person incompetent
to make certain types of decisions. Other considerations include whether
or not the person requires protection, or if there is a less restrictive
alternative to guardianship. States vary in their definitions of mental
incapacity and/or incompetency, as well as the required legal procedures
to file for guardianship and the limitations of guardianship. The law
presumes that all adults have the mental capacity to make their own decisions
unless they have been found unable to do so through a formal legal process.
Depending on the specific state and the outcome of the guardianship proceedings,
full (also known as plenary) guardianship may be declared over the person
(thereafter referred to as "the ward"), or the court may declare
limited guardianship, such as guardianship specifically related to financial
or medical matters. It is important for the primary care provider to clarify
the guardianship status of the patient, if it is in question. If the guardian
has some type of limited guardianship, he or she may lack broad decision-making
power with regard to the patient. Not all individuals with intellectual
and/or developmental disabilities (ID/DD) require guardianship. There
are several alternatives to full guardianship which preserve more of the
person’s rights and autonomy.
Health care providers must obtain informed consent from patients either
through written or verbal means, depending on the specific situation.
When written informed consent is required, care should be taken to ensure
that the materials are presented in a way that are both accessible and
developmentally appropriate for the patient. If the primary care provider
is uncertain about the patient’s capacity to consent to a particularly
procedure, he or she may request a review.
*For more detailed information about guardianship and
informed consent, see the Resource Document: Legal
and Ethical Issues in this module.
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Reproductive Healthcare
History
Healthcare providers should understand the significance of obtaining
thorough medical histories, and develop adequate interpersonal interviewing
skills to secure them. Healthcare history provides valuable information
to the clinician that may significantly influence decisions regarding
both diagnosis of presenting conditions and appropriate treatment. Reproductive
healthcare histories should include previous illnesses, diseases (STDs),
or chronic conditions, along with past or present treatments and outcomes.
Additionally, information regarding previous hospitalizations, past surgical
procedures, frequency of healthcare visits, pregnancies, contraception,
and adverse or allergic reactions to medication should be obtained. Note
any medication allergies in a conspicuous location in the patient’s
record. Most hospitals require that allergies be posted on the outside
of the patient’s chart.
Obtaining reproductive healthcare history is particularly important in
women with developmental and/or intellectual disabilities who may not
have had consistent or adequate access to preventative reproductive healthcare
services. Important information may be obtained during the history concerning
the woman’s past experiences with gynecological examination. Past
experiences with gynecological visits involving excessive anxiety, discomfort,
or fear may be identified and explored with the patient and/or guardian.
Screening for sexual abuse may be indicated.
When past experiences with gynecological examination have been clearly
negative for the patient, it may be necessary for the primary care provider
to employ pre-visit desensitization strategies. These strategies may include:
familiarizing the patient with the examination room before the day of
appointment, using specialized instructional materials such as social
stories or videos that describe the gynecological visit, and/or collaborative
coaching by the patient’s caregiver/parent. Information concerning
any needed physical accommodations during the examination should be solicited
during the history portion of the visit.
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Evaluating the Level of
Sex Education
For the adult patient with intellectual and developmental disabilities,
appropriate and thorough sex education is not only a key component in
abuse prevention and identification, but also in promoting sexual health.
Appropriate sex education also helps develop the person’s capacity
to consent to sexual activity (Murphy & O’Callaghan, 2004).
Informal assessment of sexual knowledge and behavior is perhaps the most
practical approach for most primary care providers. When evaluating patients
with intellectual disabilities, it is important that the primary care
provider ask the questions in a way tailored to the patient’s intellectual
abilities. Questions should be open-ended, yet specific, concrete, and
concise. For example, instead of asking a question like, “Do you
have sex?” a better alternative would be to ask, “What do you
know about sex?” Questions may need to be presented more slowly.
The primary care provider should be aware that people with intellectual
and developmental disabilities may require more time to formulate and
express their answers.
People with intellectual disabilities are often encouraged to be very
compliant and agreeable, particularly when talking with perceived authority
figures. Consequently, the patient may assent, acknowledge, or deny in
response to questions if they perceive that a particular answer is either
desired or discouraged. The particular method of questioning and topics
covered should accommodate the patient’s level of intellectual functioning,
life situation, and current concerns.
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Sexuality and Self-Determination
According to Wehmeyer, self-determination is “acting as the primary
causal agent in one’s life and making choices and decisions regarding
one’s quality of life free from undue external influence or interference”
(1996, p. 18). The concept of self-determination has gained prominence
in the area of advocacy for and by people with intellectual and developmental
disabilities (ID/DD) over the last two decades. Sexual self-determination
has proven to be a controversial topic, however, for a variety of reasons.
Agencies which provide support services tend to fear legal liability for
the consequences of sexual activity by individuals served, and may restrict
or prohibit sexual activity or specific types of sexual activity. Family
members and service providers may not accept the sexual needs and rights
of a person with ID/DD and may seek to restrict or deny the person’s
expression of sexuality. Lastly, there is an inherent tension between
the responsibility of agencies and guardians to protect the safety of
the person, and the person’s right to the dignity of risk that is
an inextricable component of sexual self-determination. There is no simple
answer or approach that resolves the tension between safety and self-determination.
Each family and individual’s unique issues in this area must be addressed
on an individualized basis.
The primary care provider is in a position to provide education and support
to families and to promote healthy sexual self-determination for the individual.
The primary care provider should inform individuals, guardians, and caregivers
that it is healthy and normal for individuals with ID/DD to have sexual
rights and needs. The provider may also provide sex education and or sex
education resources as needed. Finally, the provider may advocate for
the patient’s right to sex education, privacy, and self-determination.
* See Resource
Document for more information and references.
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Reproductive Management/Contraception
Women in the United States with intellectual and/or developmental disabilities
who lack either the cognitive or physical ability to manage reproductive
care issues have historically had these issues managed for them, both
by caregivers and medical providers, at the discretion of their legal
guardian. Reproductive healthcare decisions related to menstruation, hormone
administration, contraception, pregnancy/parenting, and surgical sterilization
have been made with little regard for the individual’s preferences
or legal rights.
Contraception for women with significant intellectual and/or developmental
disabilities is a controversial subject among caregivers, guardians, healthcare
providers, and lawmakers alike. Women with intellectual disabilities may
or may not be capable of consenting to sexual relations. However, primary
care providers caring for women with intellectual or developmental disabilities
should not assume that the woman is not at risk for pregnancy. An individual
with a legal guardian in some situations may still be capable of consensual
sexual activity. Furthermore, women with intellectual or developmental
disabilities are at increased risk for sexual abuse - which may result
in pregnancy.
Although, historically, hysterectomies were frequently performed on women
with intellectual and developmental disabilities to stop menses and prevent
pregnancy, there are many far less invasive forms of contraception available
today which efficiently prevent conception - with relatively few side
effects.
*See Resource Document "Reproductive
Management Strategies" for more extensive information on specific
non-surgical and surgical forms of contraception available.
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Breast Self-Examination
(BSE)
Breast cancer is a leading cause of death for women in the United States
and worldwide. In 2005, an estimated 211,240 American women were diagnosed
with breast cancer and 40,410 American women would die from the disease
during the year. Risk factors include family history of breast cancer,
increased age, nulliparity, Caucasian race, menses before age 12, fibrocystic
breast disease, oral contraceptive use, hormone replacement therapy, alcohol
consumption, and obesity. Women with intellectual disabilities frequently
experience nulliparity, a factor associated with as great as a four-fold
increase in risk of developing breast cancer. Women from minority and
low-income groups experience a higher mortality rate from breast cancer;
this may be related to the decreased accessibility of healthcare for women
in this population.
Early detection and treatment of breast tumors are keys to improving
survival rates. Although routine annual checkups and mammograms are indicated,
they do not detect tumors which may develop between visits. Breast self-examination
is a vital preventative measure which may be used by all women over the
age of twenty. The American Cancer Society recommends that women of average
risk in their twenties and thirties have a breast exam performed by a
qualified clinician at least every three years, and that women over forty
receive annual screenings. Cure rates for tumors detected early approach
100%.
Family members and/or staff caring for women with intellectual disability
have a crucial role to play in ensuring that the woman is educated concerning
breast self-examination (BSE) and capable of performing BSE herself, or
receiving BSE monthly from a qualified individual.
*See Resource Document on Preventative
Reproductive Healthcare for detailed information and links to instructional
materials.
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Sedation and General
Anesthesia
Although sedation is sometimes necessary for patients with intellectual
disabilities, it should not be considered a first-line intervention. Non-
pharmacological techniques - such as relaxation, distraction, and previsit
desensitization - are often effective in gaining cooperation in patients
with intellectual disabilities, and are a primary consideration for all
patients. Sedation, however, may be necessary for individuals with extreme
phobia concerning medical treatment, and/or those patients with involuntary
movements - such as tics or other neuromotor symptoms. Sedation may also
be necessary for those patients whose intellectual disability is such
that they cannot comprehend the need for medical care, nor understand
the intent of the healthcare provider, despite attempts to explain procedures
and gain compliance.
Types of sedation range from light, or conscious, sedation, to general
anesthesia. It is important for the healthcare practitioner to limit the
use of sedation only to specific instances when there is no other recourse.
Light oral sedatives commonly used include diazepam (Valium ™), Ativan™,
and Benadryl™.
General anesthesia is occasionally used to facilitate pelvic examination
when other strategies to obtain the exam have been exhausted. Patients
may also require IV sedation or general anesthesia for more invasive procedures
such as colposcopy or cone biopsy. It is important that the practitioner
obtain informed consent before administering anesthesia, independent from
consent obtained for the gynecological exam.
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Endometriosis
Endometriosis is a relatively common gynecologic disorder, characterized
by the presence of endometrial glands and stroma outside the uterine structures.
Lesions associated with endometriosis are most common in the dependent
areas of the pelvis, including ovaries, bowel, rectum, and bladder. The
disorder can cause pain, bleeding, and infertility.
Endometriosis may be associated with a wide variety of symptoms, or present
as asymptomatic. Symptoms include painful menstruation, painful bowel
movements, premenstrual spotting, backaches, dyspareunia, and worsening
primary dysmenorrhea. Aberrant endometrial growth may cause symptoms such
as pleuritic chest pain, pleural effusion, pneumothorax, or cyclic hemoptysis.
Physical findings specific to endometriosis are rare. Tender nodules may
be detected during pelvic examination, particularly on the posterior vaginal
wall, adnexa, or in healed scars.
Definitive diagnosis may be made by laparoscopy and/or other diagnostic
tools including magnetic resonance imaging, pelvic ultrasonography, and
measurement of serum proteins such as placental protein 14.4.
Treatment strategies focus on hormonal regulation of the patient’s
menstrual cycle. Severity of pain, disease progression, and the patient’s
desire for future childbearing should all be considered. Although pain
management may be achieved via nonsteroidal anti-inflammatory agents,
most symptoms can also be relieved through the inducement of pseudopregnancy
via oral contraceptives containing estrogen and progesterone. Danazol
treatment may be considered over pseudopregnancy-inducing drug regimens,
but has androgenic (and often irreversible) side effects. The efficacy
of a variety of surgical techniques, ranging from conservative laparoscopic
endometrial ablation to hysterectomy, has not been established.
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Sexual Abuse
It is estimated that 50%-90% of people with intellectual and developmental
disabilities (ID/DD) will experience sexual assault, sexual abuse, or
sexual exploitation in their lifetime (Cox-Lindenbaum & Watson, 2002).
Perpetrators may be service providers, family members, acquaintances,
strangers, or other individuals with disabilities.
Several risk factors increase the vulnerability of individuals with ID/DD
to sexual abuse. People may require assistance with hygiene activities.
This need for intimate care necessarily results in situations in which
the service provider/caregiver is alone with the individual. High turnover
rates for direct service workers may result in individuals being exposed
to numerous staff members with multiple opportunities for abuse to occur.
Group living situations also increase risk of sexual victimization, not
only by staff but by other residents of the facility. Additionally, individuals
may not have the knowledge and skills to identify or escape abusive situations.
It is critical that primary care providers be alert to the possibility
that patients with ID/DD may be experiencing or may have experienced sexual
abuse. When a patient with ID/DD relates that he or she has experienced
sexual abuse, the primary care provider should immediately take the appropriate
steps to ensure that the patient is protected and that the abuse is reported
(see the resource document on LEGAL
and ETHICAL ISSUES). If the individual is nonverbal, there is an array
of red flags which may indicate abuse: the emergence of self-injurious
or aggressive behavior, unexplained mood changes, sleep or appetite changes,
unexplained cuts or bruising, excessive or inappropriate sexual behavior,
avoidance of specific settings or people, withdrawal, substance abuse,
injuries to the genital area, and/or sexually transmitted diseases.
* See Resource
Document for references and more information.
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Sexually Transmitted Disease
The incidence of sexually transmitted diseases (STDs) in the United States
is higher than any other country, with approximately 15 million new cases
diagnosed each year. It is estimated that approximately two-thirds of
these cases are represented by two diseases, trichomoniasis and human
papilloma virus (HPV). Furthermore, an estimated 65 million people are
living with an incurable STD. Sexually transmitted diseases include those
produced by fungal, bacterial, and viral pathogens, as well as parasitic
infection with pubic lice (commonly called ‘crabs’) and scabies
(caused by mites). These diseases may produce symptoms ranging from mild
to severe, and may result in simply a minor nuisance, or potentially be
life-threatening if left untreated.
The incidence of STD’s specifically among people with intellectual
disabilities is not well-documented. However, it should be assumed that
people with intellectual disabilities who are sexually active are at similar
risk as the general population. Furthermore, individuals with intellectual
disabilities experience an increased risk of sexual abuse. Such abuse
may expose them to sexually-transmitted pathogens, even when they are
not voluntarily sexually active. Considering these factors, it is important
to screen all women, including those with intellectual disabilities, for
sexually transmitted disease during routine gynecological exams.
It is important that primary care providers be aware of the issues surrounding
sexuality and sexual expression in persons with intellectual disabilities.
*See Resource Document "Sexually
Transmitted Diseases" for detailed information on types of sexually
transmitted diseases, diagnosis and treatment.
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