(Lesson 4- Table of Contents) (Next) (Glossary)

As a genetic diagnosis can have a significant impact on the patient and members of the immediate and extended family, it is important to understand family dynamics and how they might affect the referral process and follow-up care. Families are not just a collection of individuals. Families have a life all their own that is distinct from, yet always connected to, the lives of the individual family members.

Within each family there are a distinct set of rules and roles that govern each family members' behavior and their interactions with one another. The role each person assumes is determined by the number of persons within the family, individual personalities and the family circumstances. The rules define what actions, feelings and relationship patterns are acceptable.

Some family rules are discussed openly. The more powerful rules, however, may be unspoken, unacknowledged or even unconscious. Some examples of family rules include the following:

• Don't express _______ (anger, sadness, envy, fear).
• Don't talk about ________.
• We can talk about or express anything in this family.
• Children must be protected from painful experiences (death, funerals, etc.).
• Men (or women) can't be trusted.
• We will support your independence.
• Never do anything to upset anybody.
• Don't upset ______.
• Don't ever make a mistake.
• It's better to try and fail than to do nothing.
• _________'s needs are more important than __________'s4.

Given the social stigma attached to the birth of a mentally retarded child or the diagnosis of a mental illness, it is not unusual for families to adopt "Don't talk about ______" rules when a child is born with a birth defect, or a family member is diagnosed with Huntington disease or schizophrenia. For this reason, the family history information provided by patients may be vague or incomplete; either because they were never told about their grandfather's diagnosis or because they feel compelled by family rules to keep the "family secrets" secret.

Family rules may also make it difficult for individuals to seek out the services or information they require. This is especially true if family members are enmeshed. An enmeshed family is characterized by the lack of individual differentiation between family members. The relationships within such families are dependent in nature. The family roles are often rigid and inflexible. Discipline occurs by disapproval and there is an emphasis on "conditional love." In such families it is not uncommon to find a resistance to change and restrictions against outside intervention or support.

Recognizing the need for a genetics referral and providing follow-up care to persons belonging to families where there are weak or nonexistent internal bonds can also be challenging. In such families the relationships are often fragmented and conflicting. Family members may be unwilling or unable to communicate with one another and there may be an overall lack of commitment to or involvement with the family. Persons belonging to such families may find it impossible to pursue genetic testing if the test requires samples of blood from other family members. Establishing a diagnosis may be difficult if crucial information, such as an uncle's or nephew's medical records, is inaccessible. Providing carrier testing to other at-risk family members may also be difficult if a patient is unwilling to share test results with his/her parents or sibs.

When working with families, especially if they are under stress, it is best not to judge their rules or relationship patterns. By offering support and affirmation of their family rules and roles, you may gain their confidence and by offering choices and alternatives, you may effect a positive change.

(Lesson 4- Table of Contents) (Next) (Glossary)