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Medicine (CAM)
Complementary and alternative medicine (CAM) refers to health care methods that are not usually considered to be conventional medicine. CAM is not typically taught in medical schools or typically available as treatment in hospitals. In the United States, approximately 38 percent of adults (about 4 in 10) and approximately 12 percent of children (about 1 in 9) are using some form of CAM. People of all backgrounds use CAM. However, CAM use among adults is greater among women and those with higher levels of education and higher incomes. Recent statistics (2007) indicate that over 50% of American Indian/Alaska Native adults use CAM, while the statistics drop for other adults of other race/ethnicities: 43% of Whites, 40% of Asians, 26% of Blacks and 24% of Hispanics. Non-vitamin, non-mineral natural products are the most commonly used CAM therapy among adults. The most popular natural products are fish oil/omega 3, glucosamine, echinacea, and flaxseed. People use CAM for an array of diseases and conditions. American adults are most likely to use CAM for musculoskeletal problems such as back, neck, or joint pain.
Several surveys of CAM use by cancer patients have been conducted with small numbers of patients. A large study of CAM use in patients with different types of cancer was published by Richardson (2000). This study found that 69% of 453 cancer patients had used at least one CAM therapy as part of their cancer treatment. Another study found that patients increase their use of CAM after receiving positive results from BRCA1/2 testing (DiGianni, 2006).
We can expect that many patients with other genetic conditions are using CAM, although studies are lacking. To effectively serve our patients, it is important for genetics professionals to be knowledgeable about CAM practices and to assess their utilization of CAM (Buehler, 2007). The culturally competent genetic counselor will anticipate that many clients will be using CAM. It is relevant to explore and discuss use of CAM in genetic counseling sessions. The National Center for Complementary and Alternative Medicine website is complete resource of information, including English and Spanish language materials to facilitate patient/provider discussions about CAM. See HYPERLINK "http://nccam.nih.gov/timetotalk/" http://nccam.nih.gov/timetotalk/
Introduction to CAM Strategies
CAM is a group of health care systems, practices, and products that are not usually included as part of conventional medicine. Complementary medicineis usedwithconventional medicine. Alternative medicineis usedin place ofconventional medicine.
According to the National Center for Complementary and Alternative Medicine ( HYPERLINK "http://nccam.nih.gov/" http://nccam.nih.gov/), there are five types of CAM: 1) whole medical systems, 2) mind-body medicine, 3) biologically-based practices, 4) manipulative and body based practices, and 5) energy medicine. Whole medical systems are built upon complete systems of theory and practice. Often, these systems have evolved independently and earlier than conventional medical approaches used in the United States. Mind-body medicine uses a variety of techniques designed to enhance the mind's capacity to affect bodily function and symptoms. Biologically-based practices in CAM use substances found in nature, such as herbs, foods, and vitamins. Manipulative and body-based practices are based onmanipulationand/or movement of one or more parts of the body. Energy therapies involve affecting energy fields surrounding the body or using electromagnetic fields.
Whole Medical Systems
Ayurvedic Medicine
Definition: Ayurevedic medicine is a whole medical system type of CAM that originated in India thousands of years ago. Ayurvedic medicine aims to integrate and balance the body, mind, and spirit. This balance is believed to lead to happiness and health, and to help prevent illness. Ayurvedic medicine also treats specific physical and mental health problems. The primary goal of Ayurvedic medicine is to cleanse the body of substances that can cause disease, thus helping to reestablish harmony and balance. Methods used to achieve these goals include enemas, massage, administering medical oils in a nasal spray, and ingesting herbs. Tonics made from certain proteins, herbs, minerals and vitamins may also be administered. HYPERLINK "http://nccam.nih.gov/health/ayurveda/introduction.htm" http://nccam.nih.gov/health/ayurveda/introduction.htm
Homeopathy
Definition: Homeopathy, also known as homeopathic medicine, is a whole medical system developed in Germany more than 200 years ago. Founders of homeopathy theorized that if a substance could cause disease symptoms in a healthy person, small amounts could cure a sick person who had similar symptoms. Homeopathy seeks to stimulate the body's ability to heal itself by giving very small doses of highly diluted substances. Homeopathic remedies are derived from natural substances that come from plants, minerals, or animals. Common remedies include red onion, arnica (mountain herb), and stinging nettle plant. HYPERLINK "http://nccam.nih.gov/health/homeopathy/" http://nccam.nih.gov/health/homeopathy/
Native American Healing
Definition: Native American healing is a broad term that includes healing beliefs and practices of hundreds of indigenous tribes of North America. It combines religion, spirituality, herbal medicine, and rituals to treat people with medical and emotional conditions. Some examples include using bark from a tree to treat pain, invoking the healing powers of spirits, performing a ceremony to appease angry spirits, and spending time in a sweat lodge to purify and cleanse the body.
HYPERLINK "http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Native_American_Healing.asp" http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Native_American_Healing.asp
Naturopathic Medicine
Definition: Naturopathy is a whole medical system that has evolved over time in different cultures and parts of the world. Naturopathy is rooted in health care approaches that were popular in Europe, especially in Germany, in the 19th century, but it also includes therapies (both ancient and modern) from other traditions. In naturopathy, the emphasis is on supporting health rather than combating disease. A central belief in naturopathy is that nature has a healing power. Another belief is that living organisms have the power to maintain (or return to) a state of balance and health and heal themselves.Some treatments used are hydrotherapy, gentle exercise, herbal medications, wholesome dietary approaches, and exposure to sun and air. HYPERLINK "http://nccam.nih.gov/health/naturopathy/" http://nccam.nih.gov/health/naturopathy/
Traditional Chinese Medicine
Definition: Traditional Chinese medicine (TCM) is a whole medical system that originated in ancient China and evolved over thousands of years. Underlying the practice of TCM is a unique view of the world and the human body that differs from Western medicine concepts. This view is based on the ancient Chinese perception of humans as microcosms of the larger, surrounding universeinterconnected with nature and subject to its forces. The human body is regarded as an organic entity in which the various organs, tissues, and other parts have interdependent, but distinct, functions. In this view, health and disease relate to a balance of functions. TCM practitioners use herbs, acupuncture, and other methods to treat a wide range of conditions.
HYPERLINK "http://nccam.nih.gov/health/whatiscam/chinesemed.htm" http://nccam.nih.gov/health/whatiscam/chinesemed.htm
Mind-body Medicine
Alexander Technique
Definition: The Alexander Technique was developed by T. Matthias Alexander during the 19th century in England. The Alexander Technique is an educational process that identifies and changes poor and inefficient habits that may be causing stress and fatigue. During a lesson, an Alexander teacher assesses the students walking, sitting, lifting and other body movements. The teacher uses touch and verbal cues to guide the student and improve coordination and decrease muscle tension.
HYPERLINK "http://www.acatnyc.org/what_is_technique.html" http://www.acatnyc.org/what_is_technique.html
Hypnosis
Definition: Hypnosis, also referred to as hypnotherapy or hypnotic suggestion, is a trance-like state of mind. It is usually achieved with the help of a hypnotherapist and is different from everyday awareness. When a person is under hypnosis, attention is focused, and he/she is deeply relaxed and calm, more open to suggestions, and less critical or disbelieving. The purpose of hypnosis is to help an individual gain more control over his/her behavior, emotions or physical well-being. Hypnosis can be used for pain control, smoking cessation, reducing stress related to medical procedures, mental health conditions, allergies, asthma, childbirth, weight loss, athletic performance, dental procedures, coping with chemotherapy, skin conditions, and gastrointestinal problems.
HYPERLINK "http://www.mayoclinic.com/health/hypnosis/SA00084" http://www.mayoclinic.com/health/hypnosis/SA00084
Meditation
Definition: There are many types of meditation, most of which originated in ancient religious and spiritual traditions. Generally, a person who is meditating uses certain techniques, such as a specific posture, focused attention, and an open attitude toward distractions. Meditation may be practiced for many reasons, such as to increase calmness and physical relaxation, improve psychological balance, cope with illness, or enhance overall wellness.
HYPERLINK "http://nccam.nih.gov/health/meditation/overview.htm" http://nccam.nih.gov/health/meditation/overview.htm
Tai Chi
Definition: Tai chi originated in China as a martial art and a means of self defense. Tai chi incorporates the Chinese concepts of yin and yang (opposing forces within the body) and qi (a vital energy or life force). Practicing tai chi is said to support a healthy balance of yin and yang, thereby aiding the flow of qi. People practice tai chi by themselves or in groups. There are many different styles of tai chi, but all styles involve slow, relaxed, graceful movements, each flowing into the next. The body is in constant motion, and posture is important. The names of some of the movements evoke nature (e.g., "Embrace Tiger, Return to Mountain"). Individuals practicing tai chi must concentrate, put aside distracting thoughts, and breathe in a deep and relaxed, but focused manner. HYPERLINK "http://nccam.nih.gov/health/taichi/" http://nccam.nih.gov/health/taichi/
Biologically-based Practices
Biofeedback
Definition: Biofeedback was first studied in the 1970s and was originally used by counselors, psychologists, and other mental health professionals. Biofeedback is used to help a person regulate specific body functions. By helping a patient change his or her heart rate, skin temperature, breathing rate, muscle tension and other such activities in the body, biofeedback can reduce stress and muscle tension. Biofeedback can promote relaxation, help correct urinary incontinence, and treat migraines and other types of headaches. Monitoring devices are used to amplify physical processes that are hard to detect without help, such as heart rate, temperature, perspiration, blood flow, brain activity, or muscle tension. This information is then "fed back" in the form of a continuous signal (such as a tone or image readout) to the person. Based on the biofeedback, he/she can adjust his or her thinking, emotional state, or other mental processes to focus on changing the signal and more effectively controlling his or her bodily functions.
HYPERLINK "http://www.cancer.org/docroot/eto/content/eto_5_3x_biofeedback.asp" http://www.cancer.org/docroot/eto/content/eto_5_3x_biofeedback.asp
Dietary Supplements
Definition: A dietary supplement is a product intended to supplement the diet. It contains one or more dietary ingredients or their constituents (vitamins, minerals, herbs, etc) and is intended to be taken by mouth as a pill, capsule, tablet, or liquid. Dietary supplement manufacturers make certain claims about the supplements effect on the body or the nutrient content of the supplement. People usually take dietary supplements when they believe that they are not getting sufficient dietary ingredients in their normal diet. For example, people take calcium supplements to increase bone health, prevent colon or prostate cancer, prevent kidney stones, or prevent hypertension. Depending on the specific dietary supplement in question, there may or may not be research supporting its medical value.
HYPERLINK "http://ods.od.nih.gov/health_information/health_information.aspx" http://ods.od.nih.gov/health_information/health_information.aspx
Metabolic Therapy
Definition: Metabolic therapy originated in the 1930s and is based on the belief that toxic substances in food and the environment build up in the body and create chemical imbalances that lead to diseases. Metabolic therapy uses a combination of special diets, enzymes, nutritional supplements, and other measures in an attempt to remove "toxins" from the body and strengthen the body's defenses against disease. Metabolic therapy usually involves natural, whole foods such as fresh fruits and vegetables, as well as vitamins and mineral supplements. Other measures may include colonic irrigation with coffee or hydrogen peroxide enemas, juicing, enzyme supplements, visualization, and stress-reduction exercises.
HYPERLINK "http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Metabolic_Therapy.asp" http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Metabolic_Therapy.asp
Neural Therapy
Definition: Neural therapy is mainly used in Germany. This therapy is based on the belief that energy flows through the body of a healthy person and is disrupted in a sick person. Neural therapy involves the injection of anesthetics (drugs that normally cause numbness or reduce pain) into various places in the body to eliminate pain and cure illness.
HYPERLINK "http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Neural_Therapy.asp?sitearea=ETO" http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Neural_Therapy.asp?sitearea=ETO
Systemic Enzyme Therapy/Enzyme Replacement Therapy
Definition: Both plant-derived and pancreatic enzymes are used independently or in combination in enzyme therapy. Plant enzymes are prescribed to enhance the body's vitality by strengthening the digestive system, while pancreatic enzymes may be beneficial to both the digestive system and immune system. As proper digestive functioning is restored, many acute and chronic conditions may also be remedied. Enzyme therapy is used for a variety of ailments, including some common ailments such as headaches, hypertension, and back pain.
http://library.thinkquest.org/24206/enzyme-therapy.html
Manipulative and Body-based Practices
Acupuncture
Definition: Acupuncture originated in China and is a key component of Traditional Chinese Medicine (TCM). In TCM, the body is seen as a delicate balance of two opposing and inseparable forces:yin and yang. Yin represents the cold, slow, or passive principle, while yang represents the hot, excited, or active principle. According to TCM, health is achieved by maintaining the body in a "balanced state:" disease is due to an internal imbalance of yin and yang. The term "acupuncture" describes a family of procedures involving the stimulation of anatomical points on the body using a variety of techniques. The acupuncture technique that has been most often studied scientifically involves penetrating the skin with thin, solid, metallic needles that are manipulated by the hands or by electrical stimulation. People experience acupuncture differently, but most feel no or minimal pain when the needles are inserted. Some people feel energized by acupuncture treatment, while others feel relaxed.
HYPERLINK "http://nccam.nih.gov/health/acupuncture/introduction.htm" http://nccam.nih.gov/health/acupuncture/introduction.htm
Chiropractic
Definition: Chiropractic is a health care approach that focuses on the relationship between the body's structure, mainly the spine, and its functioning. A chiropractic adjustment involves using the hands or a device to apply a controlled, sudden force to a joint, moving it beyond its passive range of motion. The goal of chiropractic care is to increase the range and quality of motion in the area being treated and aid in restoring health.
HYPERLINK "http://nccam.nih.gov/health/chiropractic/" http://nccam.nih.gov/health/chiropractic/
Craniosacral Therapy
Definition: Craniosacral therapy involves the gentle massage of bones in the skull (including the face and mouth), spine, and pelvis to ease stress in the body and improve physical movement. Craniosacral therapy supporters believe that it alleviates ailments by increasing the flow of cerebrospinal fluid.
HYPERLINK "http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Craniosacral_Therapy.asp" http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Craniosacral_Therapy.asp
Massage Therapy
Definition: The term "massage therapy" encompasses many different techniques. In general, massage therapists press, rub, and otherwise manipulate the muscles and other soft tissues of the body. They most often use their hands and fingers, but may use their forearms, elbows, or feet. People use massage for a variety of health and wellness purposes, including relieving pain, rehabilitating sports injuries, reducing stress, increasing relaxation, and relief from mental illnesses such anxiety and depression.
HYPERLINK "http://nccam.nih.gov/health/massage/" http://nccam.nih.gov/health/massage/
Reflexology
Definition: Reflexology is massage of the feet or hands that aims to promote other areas of the body. Modern reflexology is based on the principle that the foot has reflex points that correspond to the various structures and organs throughout the body. For example, on the left foot, the tip of the big toe corresponds to the brains left hemisphere.During a reflexology session, a practitioner relaxes an individuals feet with gentle massage, and then works on the reflex points using specific techniques. Supporters of reflexology believe that it can cure a variety of ailments, such as stress, digestive disorders and sleep problems. HYPERLINK "http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Reflexology?Open" http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Reflexology?Open
Energy Medicine
Electromagnetic Therapy
Definition: Electromagnetic therapy involves the use of energy to diagnose or treat disease. Electromagnetic energy includes electricity, microwaves, radio waves, and infrared rays, as well as electrically generated magnetic fields. Practitioners of electromagnetic therapy claim that when electromagnetic frequencies or energy fields within the body go out of balance, disease and illness occur. They claim that these imbalances disrupt the body's chemical makeup. By applying electromagnetic energy from outside the body, usually with electronic devices, practitioners claim they can correct the imbalances in the body. HYPERLINK "http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Electromagnetic_Therapy.asp" http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Electromagnetic_Therapy.asp
Reiki Healing
Definition: Reiki is a healing practice that originated in Japan. Reiki practitioners place their hands lightly on or just above the person receiving treatment, with the goal of facilitating the person's own healing response. Reiki is based on the idea that there is a universal (or source) energy that supports the body's innate healing abilities. Practitioners seek to access this energy, allowing it to flow to the body and facilitate healing. Although generally practiced as a form of self-care, Reiki healing can be received from someone else and may be offered in a variety of health care settings, including medical offices, hospitals, and clinics. In a Reiki session, the client lies down or sits comfortably, fully clothed. The practitioner's hands are placed lightly on or just above the client's body, palms down, using a series of 12 to 15 different hand positions.
HYPERLINK "http://nccam.nih.gov/health/reiki/" http://nccam.nih.gov/health/reiki/
Genetic Counseling Case Examples
The following cases illustrate several situations that might be encountered by a genetic counselor. For the benefit of prospective students and others who are just learning about genetic counseling, we have envisioned many points that may be covered in these sessions. However, these case outlines should not be considered to be standard of care or sufficiently individualized or comprehensive to be used in practice.
It is critical for the counselor to thoroughly explore all exposures that may pose a risk to a developing fetus, to the mother herself, and to others living in the household. Genetic counselors will research the potential effects of exposures to determine any teratogenic risk by using databases such as Reprotox (http://www.reprotox.org/Default.aspx). General pointers for evaluating exposures for teratogenicity are listed in the attached document.
The genetic counselor who provides high quality client-centered culturally sensitive care goes beyond the basics. The counselor may choose to use a mnemonic tool such as ADHERE to guide sessions that involve use of complementary or alternative medicine.
ADHERE
ADHERE is a mnemonic tool that can be very helpful for health care providers to gain an understanding of the patients lifestyle and culture. These key factors of the mnemonic will help eliminate concerns and questions the patients come across. The treatment plan will be a result of both the patient and health care providers goals and desires, designed by compromising and discussing important issues together.
Acknowledge: Acknowledge the need for treatment with the patient, and ask about previous treatments utilized. Together determine mutual goals and desired outcomes.
Discuss: Discuss potential treatment strategies and options, as well as consequences of non-treatment with the patient (consider issues such as treatment effectiveness, prognosis, use of complementary/ alternative medicine, brand name vs. generics, off-label uses, prescription plans, formularies, etc.).
Handle: Handle any questions or concerns the patient may have about treatment (e.g., fears or worries, side effects, costs, dosage, frequency, timing, sequence, duration of treatment, drug or food interactions, and proper storage techniques).
Evaluate: Evaluate the patients functional health literacy and understanding of the purpose/rationale for treatment, and assess barriers and facilitators to adherence (e.g., environmental, economic, occupational, and socio-cultural factors, family situation and supports)
Recommend: Recommend treatment, and review the therapeutic regimen with the patient.
Empower: Empower by eliciting the patients commitment and willingness to follow-through with the therapeutic regimen.
Originally referenced:
Soto-Greene, M., Salas-Lopez, D., Sanchez, J., and Like, R.C. (2004) Antecedents to Effective Treatment of Hypertension in Hispanic Populations. Clinical Cornerstone, 6(3), 30-36.
Reference
(2002) Appendix A: The Toolbox. Transforming the Face of Health Professions Through Cultural & Linguistic Competence Education: The Role of the HRSA Centers of Excellence. Health Resources and Services Administration. Retrieved October 29, 2009 from HYPERLINK "http://www.hrsa.gov/culturalcompetence/curriculumguide/AppendixA.htm" http://www.hrsa.gov/culturalcompetence/curriculumguide/AppendixA.htm.
Case 1: Mariana Mires is 19 years old and approximately 18 weeks along into an unplanned pregnancy. Mariana scheduled a genetic counseling appointment at the urging of her next-door neighbor because she used Contergan during the first 9 weeks of her current pregnancy. This medication was prescribed by doctors in Brazil, which is Marianas home country. She just recently moved to the U.S. to begin college studies at a major university. Mariana typically consumes acai palm juice when she feels tired. She has been drinking it regularly in the past month because she has been feeling very tired, and it usually makes her feel less homesick. Mariana expressed concern that the (mandatory) tuberculosis skin test she had 2 weeks ago when she registered for school might be harmful to her fetus.
Case Preparation:
Research Contergan (thalidomide), acai juice and tuberculin skin testing in several reputable sources.
HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/" \t "_blank" http://www.ncbi.nlm.nih.gov/pubmed/
PubMed
HYPERLINK "http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html" \t "_blank" http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html
Medline Plus, Herbs and Supplements:
OTIS (Organization of Teratogen Information Specialists)
HYPERLINK "http://www.otispregnancy.org/files/thalidomide.pdf" http://www.otispregnancy.org/files/thalidomide.pdf
Reprotox
HYPERLINK "http://www.reprotox.org/Default.aspx" http://www.reprotox.org/Default.aspx
Motherisk
HYPERLINK "http://www.motherisk.org/" \t "_blank" http://www.motherisk.org/
Research general and pregnancy health care, health beliefs, and concept of family in Brazil. Research use in Brazil of the medication that was prescribed to Mariana. Use general information as a way to expand your perspectives, but not to stereotype. Always ask the patient specifically about her individual beliefs, customs, etc.
General language, culture, customs and etiquette in Brazil
HYPERLINK "http://www.kwintessential.co.uk/resources/global-etiquette/brazil-country-profile.html" http://www.kwintessential.co.uk/resources/global-etiquette/brazil-country-profile.html
World Health Organization
HYPERLINK "http://www.who.int/countries/bra/en/" http://www.who.int/countries/bra/en/
Thalidomide in Brazil
HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/10203451" http://www.ncbi.nlm.nih.gov/pubmed/10203451
Contracting:
ask Mariana why she has come for genetic counseling and what she hopes to accomplish
evaluate her knowledge, emotional state and concerns
assess the patients English, health literacy, and acculturation. Arrange for an interpreter if needed.
assess partners involvement in the pregnancy
begin exploring Marianas feelings about being pregnant
assess feelings about being away from home and begin to assess support
assess ability to take care of her health, physically and emotionally
Pregnancy History:
document pregnancy LMP and EDC
document timing, dosage and reasons for any medications, drugs, alcohol, and other exposures during the pregnancy
document medical concerns in the pregnancy, and Marianas general health
review when and how the pregnancy was diagnosed and ask Mariana to share any previous discussions she has had about the pregnancy with health care providers in Brazil
assess whether the patient has identified a U.S. prenatal health care provider or clinic
discuss culturally-grounded practices regarding drinking acai juice.
Family History:
ask appropriate questions to generate a 4 generation pedigree for Mariana and partner, including living children, miscarriages, etc.
assess their ethnicity and possibility of consanguinity
Medical History:
ask Mariana why her doctor prescribed the medications and to share any thoughts she has about them
assess current and past medical status and whether she has doctors in the U.S.
Risk Assessment:
before the case, research will have been completed on known exposures
if any additional exposures were identified during the session, look them up during the session or get back to the client later
share information verbally and use visual aids as appropriate
assess Marianas understanding and feelings about the information
Risk Counseling:
through previous discussion, the counselor will have assessed Marianas knowledge and feelings about the medications
provide reassurance about the tuberculin skin test
explore potential for moderating ingestion of acai palm juice
the counselor may need to break the news about the known teratogenicity of thalidomide
review the risks to the fetus of Marianas use of thalidomide in pregnancy
assess Marianas understanding and feelings about the information
Discuss Options:
review the options of ultrasound and termination of pregnancy
provide risk and benefit information and engage the client in discussion
assess Marianas understanding and feelings about the information
Psychosocial Counseling:
explore Marianas thoughts and feelings about the pregnancy in the context of her background, her family, her partner, her planned university studies, and hoped for life plans
explore Marianas thoughts and feelings about the risks due to thalidomide exposure
explore Marianas thoughts and feelings about cultural/religious issues regarding termination of pregnancy
discuss Marianas concept of family
assess support
use a variety of counseling skills to facilitate decision making about the pregnancy
Follow Up:
speak to Mariana in a few days, by phone or in person
suggest scheduling another appointment with her partner, if appropriate
offer to meet again in a day or two with the father of the baby and/or other family members or support persons
continue to provide support and facilitate decision making as needed
schedule follow up appointments, tests, procedures as needed
write a letter summarizing the genetic counseling session, using wording that is both suitable for Marianas permanent medical record and for sharing with family members if she wishes
reflect on your personal thoughts and feelings about the case. What did you learn? What might you do differently in the future? Present the case and share your thoughts and feelings in a peer review setting.
Case II: Abeo Eze is a 32 year old Nigerian woman who works in a local nursing home. Abeo has lived in the U.S. for about 9 months. She is seen at your genetics center due to sickle cell disease, for which she is treated with hydroxyurea. To stay healthy, Abeo also follows a daily regimen of taking large daily doses of vitamin C and folic acid at every meal. Abeo wants to become pregnant. Her family doctor encouraged Abeo to talk to the genetic counselor to review the risks to a future pregnancy of all drug exposures.
Case Preparation:
Read about medical and cultural issues as to prepare for meeting with a recent immigrant from Nigeria
PubMed
HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/" \t "_blank" http://www.ncbi.nlm.nih.gov/pubmed/
Etiquettes, Culture, Customs, Language in Nigeria
HYPERLINK "http://www.kwintessential.co.uk/resources/global-etiquette/nigeria.html" http://www.kwintessential.co.uk/resources/global-etiquette/nigeria.html
HYPERLINK "http://www.everyculture.com/Ma-Ni/Nigeria.html" http://www.everyculture.com/Ma-Ni/Nigeria.html
HYPERLINK "http://webinstituteforteachers.org/~esohes/africa/culture.html" http://webinstituteforteachers.org/~esohes/africa/culture.html
World Health Organization
HYPERLINK "http://www.who.int/countries/nga/en/" http://www.who.int/countries/nga/en/
Research hydroxyurea, effects of large doses of Vitamin C and folic acid, and Sickle Cell disease
PubMed
HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/" \t "_blank" http://www.ncbi.nlm.nih.gov/pubmed/
Research Articles:
HYPERLINK "http://www.biomedcentral.com/content/pdf/1744-8603-6-2.pdf" http://www.biomedcentral.com/content/pdf/1744-8603-6-2.pdf
March of Dimes:
HYPERLINK "http://www.marchofdimes.com/professionals/14332_1151.asp" http://www.marchofdimes.com/professionals/14332_1151.asp
Motherisk
HYPERLINK "http://www.motherisk.org/women/updatesDetail.jsp?content_id=891" http://www.motherisk.org/women/updatesDetail.jsp?content_id=891
J Natl Med Assoc. 2009 Oct;101(10):1046-51
HYPERLINK "http://mail.ny.acog.org/website/PreconBooklet.pdf" http://mail.ny.acog.org/website/PreconBooklet.pdf
HYPERLINK "http://www.acog.org/publications/patient_education/bp001.cfm" http://www.acog.org/publications/patient_education/bp001.cfm
HYPERLINK "http://ajol.info/index.php/ajb/article/viewFile/58197/46560" http://ajol.info/index.php/ajb/article/viewFile/58197/46560
Contracting:
ask Abeo to share perspectives on meeting with a genetic counselor and what she hopes to accomplish during this session
explore immigration and transitional issues
assess Abeos English, health literacy, and acculturation. Arrange for an interpreter if needed.
explore Abeos knowledge and feelings about sickle cell disease and pregnancy
assess the partners current involvement in Abeos life and medical care. Explore the partners anticipated involvement in a planned pregnancy
Medical History:
discuss Abeos diagnosis of sickle cell disease timing, her personal experiences with the disease natural history and any complications, and explore the overall impact of the disease on her quality of life
elicit Abeos understanding of her current treatment plan for sickle cell disease
review additional past/current medical history and any co-morbid conditions
review medications taken
ask about consumption of alcohol, smoking history, use of recreational drugs, environmental exposures such as chemicals, radiation/x-rays
Family History:
ask appropriate questions to generate a 4 generation pedigree for Abeo and partner
document self-reported ethnicity and possibility of consanguinity in Abeos extended family
document self-reported ethnicity and possibility of consanguinity in her partners extended family
inquire about consanguinity between Abeo and her partner.
Risk Assessment:
before the case, research will have been done on known exposures and effects of mega doses of Vitamin C and folic acid
if any additional exposures were identified during the session, look them up during the session or get back to the client later
share information verbally and use visual aids as appropriate
assess Abeos understanding and feelings about the information
Risk Counseling:
through previous discussion, the counselor will have assessed Abeos knowledge and feelings about the medications, vitamins
assess her understanding and present current literature on hydroxyurea, mega doses of Vitamin C and folic acid
HYPERLINK "http://www.motherisk.org/women/updatesDetail.jsp?content_id=891" http://www.motherisk.org/women/updatesDetail.jsp?content_id=891
J Natl Med Assoc. 2009 Oct;101(10):1046-51
discuss the medical risk - benefits ratios and Abeos risk perceptions and thoughts
the counselor may need to explain and compare animal and human studies for hydroxyurea and the importance of using folic acid within the recommended dosage range
review/explain genetics of sickle cell disease/trait, and autosomal recessive inheritance
discuss reproductive risks of having a child with sickle cell disease. (e.g. If your partner is African American, he would have a 1 in 8 chance for having sickle cell trait. This would mean an estimated 1 in 16 risk (1 x 1/8 x ) for sickle cell disease occurring in each child that you have as a couple.)
Discuss Options:
discuss availability and risk/benefits of prenatal testing options CVS, amniocentesis, ultrasound
check on Abeos feelings about the discussion
Psychosocial Counseling:
explore Abeos thoughts and feelings about the pregnancy in the context of her socio-cultural background, family, relationship with her partner, sickle cell disease, and hoped for life plans
explore Abeos thoughts and feelings and cultural/religious issues regarding prenatal testing
discuss Abeos concept of family
use a variety of counseling skills to facilitate discussion about planning a future pregnancy
gauge the extent and type of support Abeo has from friends, family, co-workers, and relevant religious/socio-cultural communities
assess Abeos ability to care for her health and a future family: financially, physically, emotionally
ask Abeo to share her discussions with the family doctor about initiating a pregnancy. Have they discussed being monitored by a high risk pregnancy specialist? Is she aware of additional medical risks that pregnancy may present to the baby and the mother? Encourage Abeo to share her interest in becoming pregnant with her sickle cell doctors. They may suggest an obstetrician with expertise in caring for other women who have had sickle cell disease. High risk pregnancy care can be maintained while still being cared for a family doctor for other medical issues. Good communication among all of Abeos health care providers is essential.
Follow Up:
suggest scheduling another appointment with her partner, if appropriate and/or other family members or support persons
facilitate genetic testing for sickle cell trait for Abeos partner and other family members, if desired
continue to provide information and support as needed
identify appropriate educational, health care, financial, support resources as needed
depending on Abeos level of health literacy, the counselor will want to suggest several excellent patient educational materials on sickle cell disease and pregnancy, to enhance Abeos knowledge, that of her partner, and/or supportive relatives and friends. These resources can be accessed from a home or library computer. Some suggested materials below provide visual/graphic and/or low literacy information.
write a letter summarizing the genetic counseling session, using wording that is both suitable for Abeos permanent medical record and for sharing with family members if she wishes
reflect on your personal thoughts and feelings about the case. What did you learn? What might you do differently in the future? Present the case and share your thoughts and feelings in a peer review setting.
Additional Resources:
HYPERLINK "http://www.cdc.gov/ncbddd/sicklecell/documents/SCD%20factsheet_SCD%20%20Pregnancy.pdf" http://www.cdc.gov/ncbddd/sicklecell/documents/SCD%20factsheet_SCD%20%20Pregnancy.pdf
HYPERLINK "http://www.marchofdimes.com/baby/birthdefects_sicklecell.html" http://www.marchofdimes.com/baby/birthdefects_sicklecell.html
HYPERLINK "http://www.chkd.org/healthlibrary/content.aspx?pageid=P02499" http://www.chkd.org/healthlibrary/content.aspx?pageid=P02499
HYPERLINK "http://sickle.bwh.harvard.edu/scd_preg2.html" http://sickle.bwh.harvard.edu/scd_preg2.html
HYPERLINK "http://www.umm.edu/patiented/articles/what_complications_of_sickle-cell_disease_their_treatments_000058_6.htm" http://www.umm.edu/patiented/articles/what_complications_of_sickle-cell_disease_their_treatments_000058_6.htm
HYPERLINK "http://emedicine.medscape.com/article/778971-overview" http://emedicine.medscape.com/article/778971-overview
______________________________________________________________________
References
Barnes PM, Bloom B, Nahin R. CDC National Health Statistics Report #12. Complementary and Alternative Medicine Use Among Adults and Children: United States, 2007. December 2008.
Buehler, B. (2007) Research Review: Complementary and Alternative Medicine (CAM)
in Genetics. American Journal of Medical Genetics Part A, 143A, 2889-2892.
Diagianni, L., Rue, M., Emmons, K., & Garber, J. (2006) Complementary Medicine Use
Before and 1 Year Following Genetic Testing for BRCA1/2 Mutations. Cancer, Epidemiology, Biomarkers & Prevention, 15(1), 70-75.
Richardson MA, Sanders T, Palmer JL, Greisinger A, Singletary SE. (2000). Complementary/alternative medicine use in a comprehensive cancer center and the implications for oncology. Journal of Clinical Oncology, 18(13):25052514.
Online Resources
American Cancer Society
HYPERLINK "http://www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO" http://www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO
This website explains the use of CAM for cancer therapy. Each summary has a description of the strategy, an explanation of how it is used, a description of CAM treatment, the history behind its use, an overview of the evidence supporting the strategy, possible complications, and a list of resources.
Better Health Channel
HYPERLINK "http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/tr_complementarytherapies?open" http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/tr_complementarytherapies?open
The Better Health Channel is a website sponsored by the government of Victoria, Australia. Each CAM summary on this site includes an overview, health problems the CAM can treat, an explanation of how the specific CAM is performed, and a description of providers that perform the CAM.
InteliHealth Complementary and Alternative Medicine
HYPERLINK "http://www.intelihealth.com/IH/ihtIH/WSIHW000/8513/8513.html?k=navx408x8513" http://www.intelihealth.com/IH/ihtIH/WSIHW000/8513/8513.html?k=navx408x8513
This website explains the basics of CAM and provides summaries for several CAM strategies, herbal medicines and supplements.
Mayo Clinic
HYPERLINK "http://www.mayoclinic.com/" http://www.mayoclinic.com/
This website describes several CAM strategies. Enter the name of the strategy in the search engine. Each summary explains why the strategy is performed, the risks involved, how to prepare, what to expect during treatment, and possible results.
National Cancer Institute
HYPERLINK "http://www.cancer.gov/cancertopics/factsheet/therapy/CAM" http://www.cancer.gov/cancertopics/factsheet/therapy/CAM
This website offers a fact sheet on Complementary and Alternative Medicine in Cancer Treatment in questions and answer format. It is available in both English and Spanish.
National Center for Complementary and Alternative Medicine
HYPERLINK "http://nccam.nih.gov/" http://nccam.nih.gov/
This is the website of the National Center for Complementary and Alternative Medicine (NCCAM), which is part of the NIH. It has a summary of CAM, overviews of several different types of CAM and links to resources and clinical trials. This website also has video clips of CAM practices and video lectures.
NIH Office of Dietary Supplements
HYPERLINK "http://ods.od.nih.gov/health_information/health_information.aspx" http://ods.od.nih.gov/health_information/health_information.aspx
This website provides very detailed information about using dietary supplements and relevant government regulations.
PAGE
Disclaimer The purpose of the Genetic Counseling Cultural Competence Toolkit (GCCCT) is to improve the delivery of culturally responsive, client-centered genetic counseling to diverse populations and to reduce health disparities. The GCCCT is an educational resource; any suggestions do not define the standards of clinical or educational practice. All cases and scenarios are hypothetical. The JEMF, NSGC and Nancy Steinberg Warren, MS, CGC will not be liable for any medical or psychosocial applications connected with the use of or reliance upon any information obtained from this website or associated links and resources. ________________________________________________________ This work has been supported by the Jane Engelberg Memorial Fellowship, the 2009 grant from the Engelberg Foundation to the National Society of Genetic Counselors, Inc. 2010 Nancy Steinberg Warren, MS, CGC, all rights reserved
Disclaimer The purpose of the Genetic Counseling Cultural Competence Toolkit (GCCCT) is to improve the delivery of culturally responsive, client-centered genetic counseling to diverse populations and to reduce health disparities. The GCCCT is an educational resource; any suggestions do not define the standards of clinical or educational practice. All cases and scenarios are hypothetical. The JEMF, NSGC and Nancy Steinberg Warren, MS, CGC will not be liable for any medical or psychosocial applications connected with the use of or reliance upon any information obtained from this website or associated links and resources. ________________________________________________________ This work has been supported by the Jane Engelberg Memorial Fellowship, the 2009 grant from the Engelberg Foundation to the National Society of Genetic Counselors, Inc. 2010 Nancy Steinberg Warren, MS, CGC, all rights reserved
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