FAQ W Ans (Pott 33-FAQ)

Frequently Asked Questions

Nineteen-year-old Elizabeth has come to the family clinic for a premarital exam. She appears anxious and hesitant to go. You invite her to the conference room and open the conversation by making a statement about the differences and challenges that marriage brings. You ask her if she has any questions that you could answer. She sighs, “My youngest brother is mentally retarded; he’s been difficult to have in our home because of his angry outbursts and destructive actions. My fiancé has been talking about not having kids if there is a chance they will be like Matt. I want kids, but I don’t want a child who is like Matt.” What information can you give Elizabeth about mental retardation?

Approximately 3% of children are mentally retarded. Mental retardation is often associated with other syndromes or conditions such as Down syndrome or fetal alcohol syndrome. Mental retardation can also occur as a singular unrelated problem. The cause of mental retardation cannot be limited to one thing. It may include genetic, prenatal, and perinatal factors. These factors may represent environmental, chemical, reduced situations of perfusion or oxygenation, infections, and traumatic exposures. While providing this information to Elizabeth, it will also be important to educate her about what behaviors and actions in planning, carrying, and delivering a child can help in reducing situations where the aforementioned exposures are reduced or eliminated. These actions can include ensuring good nutrition, refraining from consuming alcohol or other drugs, and limiting exposure to possible harmful chemicals. It will also be important for Elizabeth and her fiancé to discuss this issue honestly and openly. Both may need to receive additional information about the roles and challenges of having a family. Right now, Elizabeth needs the opportunity to express her feelings and concerns in addition to education and support.

After reviewing Elizabeth’s appointment, you begin to reflect on the impact mental retardation (and other childhood disorders) has had on her thoughts about her future. What are the implications for nursing care of siblings of mentally retarded children?

Nurses can be instrumental in identifying the child with physical, mental, social, and emotional problems. When seeing the child in the clinic or other nurse-client environments, take the time to note physical and psychosocial appearances. Note behaviors such as failure to make eye contact, lack of engagement, or an attitude of worthlessness. If the child’s appearance and presentation are appropriate, provide an opportunity for the child to discuss his or her feelings and concerns. It is important to realize that there are multiple reactions from siblings of children with special needs. These include an increase in caring, cooperative, and self-control behaviors; attention-seeking behaviors; depression; and lowered self-esteem. Recognizing these, it will be important to keep in mind to consider the health care needs of siblings (and parents) of children with special needs.

Betty and Glen Adams have just had their first child. As a young couple in their 20s, they were surprised and overwhelmed when their little girl was born with Down syndrome. They still can’t believe it. Betty states, “I thought only older women were at risk for having children with Down syndrome.” What basic information can you provide to the Adams family about Down syndrome?

Down syndrome, a congenital chromosomal disorder, occurs in 1 out of 1,000 live births. Although women over 35 years old are at higher risk of having a baby with Down syndrome, the younger, even first-time, mother, may have an infant with the disorder. The Adams family will need support and education regarding health promotion, early intervention programs, growth and development, and nutrition. It will be important to access frequent health assessment during infancy to monitor for cardiac structure and function, thyroid function, vision, and hearing.

Martin is 3 years old and has rarely left his house except to play in his backyard. Martin’s parents are divorcing. Their lives have been full of anxiety and stress since Martin’s diagnosis of autism. He must wear a protective helmet because he bangs his head constantly. He lacks any communication ability, and the sounds he makes are either screams or whimperings. His father has tried to get his wife to place Martin in a special care center. She refuses. The stress of their lack of agreement over caring for Martin has resulted in a divorce with both parents seeking custody. The court ordered an evaluation, and Martin has been placed in foster care for additional evaluation. You are meeting with the foster parents for the first time. What plans of care should be discussed with them?

Based on information from Martin’s parents, the social worker evaluation, and experience, the following goals and plan of care should be discussed with Martin’s foster care parents. Martin has demonstrated behavior that has potential for injuries; the goal will be that he does not harm himself and the home is made into a safe environment. Martin has not been able to communicate; the goal will be that Martin develops a basic method for communicating—sign language may be the method of choice. Martin has had very limited social contact, and his behavior becomes aggressive when he is in an environment with more than one or two people present. Martin has never been cared for by anyone except his mother. This means a change in environment, people, or place will most likely cause him to feel additional stress, which may require more patience and understanding for a long period of time. If the court determines that Martin’s mom will have custody, she may be willing to integrate some of the interventions you have established for Martin. This would be a positive thing for Martin.

You have been working in the American Indian Teen Clinic for 2 years. You have noticed an increasing number of young teenage moms with babies. Many of these babies are small for their age, appear developmentally delayed, and have similar facial characteristics. You have learned that many babies in this community have fetal alcohol syndrome. What should you know about fetal alcohol syndrome?

Fetal alcohol syndrome (FAS) is a group of physical, behavioral, and cognitive abnormalities. FAS is associated with a maternal history of heavy or regular alcohol consumption. The incidence of FAS is higher in many American Indian populations. The amount of alcohol consumption that causes FAS is not the same for every woman. An established “safe limit” has not been determined, but consumption of large amounts causes greater harm to the developing fetus. Clinical manifestations of FAS include growth and development impairment, developmental delay, mental retardation, learning and attention disorders, behavioral problems, a small head and abnormally small eyes, thin upper lip, and flattened or absent maxillary area. An important role you should assume is advocating alcohol abstinence, with associated education and support; and helping the teens you work with assume and develop better health behaviors, which will help decrease the incidence of FAS.