To assist patients in disclosing to family members, clinicians can ask about familial relationships and how family members tend to discuss health and illness.
Those who feel confident in disclosing genetic information often encourage other family members to learn more about their own risks and to consider genetic testing, if appropriate. Nurses can counsel patients on different means of contacting relatives: in person; by telephone, e-mail, or letter; through another trusted relative; or by bringing family members with them when results are given. (See HIPAA and Genetic Disclosure.)
When a person contacts family members, she or he should have up-to-date information on the condition, genetic risk, and genetic testing. To reach a number of family members at the same time, especially distant relatives or family members who are estranged, a patient may write a family letter, which allows the patient time to formulate thoughts and gives relatives information in writing that they can review and keep for future reference. Family members can be encouraged to talk with clinicians and meet with a genetics expert to discuss risks, benefits, and limitations of genetic testing.
As children and adolescents mature, their ability to understand and their communication skills increase. Clinicians should tailor the information they provide to parents and children according to the children's developmental stages and the parents' preferences, actively assisting parents in discussing the condition and its inheritance with children.17
To the parent of a seven-year-old, a nurse may simply ask, “Have you ever talked with Jake about his cystic fibrosis?” If the parent indicates that the child doesn't seem ready to discuss any aspects of the condition besides treatment, provide reassurance and advice: “Other parents of young children feel the same as you do. When Jake is ready for more information, he'll start asking questions. You know your own child best. If he is attentive when you talk to him about it or has questions, then he's ready for more information.” End the conversation by emphasizing your availability for continued support: “You can always give me a call if you or Jake have any other questions. Here are a couple of pamphlets about talking to your children about cystic fibrosis. Other parents have found them helpful.”
As the children approach adolescence, science classes may prompt them to initiate a conversation with their parents. At that point they may be ready for more detailed explanations, informational pamphlets, or a meeting with a genetics expert.
Parents often wonder whether their healthy children should have genetic testing. Clinicians can advise parents that, unless the hereditary condition affects children, most experts recommend allowing children to make this decision independently, when they are old enough to understand the implications of testing, after being fully informed of the pros and cons.18, 19
Children who should be tested for genetic conditions include those with a family history of hereditary colon cancer, multiple endocrine neoplasia types 2A and 2B, and von Hippel–Lindau syndrome. A positive test would signal the need to begin screening or monitoring, and possibly treating, at a young age.20, 21
The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics established by a nursing consensus panel,22, 23
and the Genetics–Genomics Nursing: Scope and Standards of Practice,24
developed by the International Society of Nurses in Genetics and the American Nurses Association, provide direction to nurses for delivering competent nursing care regarding genetic and genomic issues. Nurses and other health care professionals have opportunities to work with patients and their families to understand what is involved in genetic disclosure and to provide them with accurate, appropriate, and current information, resources, and referrals to facilitate disclosure decisions. (See Resources for Families.