Chapter 19: Family-Centered Care of the Child with Chronic Illness or Disability, or EOL (family-centered palliative care)

What are supportive interventions that can assist an infant with a chronic illness to meet developmental milestones? (Select all that apply.) a. Encourage consistent caregivers. b. Encourage periodic respite from demands of care. c. Encourage one family member to be the primary caretaker. d. Encourage parental rooming in during hospitalization. e. Withhold age-appropriate developmental tasks until the child is older.

A, B, D (To develop trust, consistent caretakers and parents rooming in should be encouraged. To develop a sense of separateness from parents, periodic respites from caregiving should be encouraged. All members of the family, not one primary caretaker, should be encouraged to participate in care. Age-appropriate developmental tasks should be encouraged, not withheld until an older age.)

What are supportive interventions that can assist a toddler with a chronic illness to meet developmental milestones? (Select all that apply.) a. Give choices. b. Provide sensory experiences. c. Avoid discipline and limit setting. d. Discourage negative and ritualistic behaviors. e. Encourage independence in as many areas as possible.

A, B, E (To encourage autonomy, choices should be given and independence encouraged in as many areas as possible. Sensory experiences should be encouraged to help the toddler to learn through sensorimotor experiences. Age-appropriate discipline and limit setting should be initiated. Negative and ritualistic behaviors are normal and should be allowed.)

What are supportive interventions that can assist an adolescent with a chronic illness to meet developmental milestones? (Select all that apply.) a. Encourage activities appropriate for age. b. Avoid discussing planning for the future. c. Provide instruction on interpersonal and coping skills. d. Emphasize good appearance and wearing of stylish clothes. e. Understand that the adolescent will not have the same sexual needs.

A, C, D (To achieve independence from family, instruction on interpersonal and coping skills should be provided. To promote heterosexual relationships, activities appropriate for age should be encouraged, and a good appearance and wearing of stylish clothes should be emphasized. Plans for the future should be discussed, and the adolescent will have the same sexual needs as adolescents without a chronic illness.)

2. What are common respiratory symptoms dying children experience? (Select all that apply.) a. Cough b. Eupnea c. Wheezing d. Shortness of breath e. Decrease in secretions

ANS: A, C, D Common respiratory symptoms dying children experience include cough, wheezing, and shortness of breath. Eupnea is normal breathing, and secretions increase not decrease.

5. What characterizes a preschooler's concept of death? (Select all that apply.) a. Belief their thoughts can cause death. b. They have a concrete understanding of death. c. Death is seen as temporary and gradual. d. Death is seen as a departure, a kind of sleep. e. They usually have some sense of the meaning of death.

ANS: A, C, D, E A preschool child's concept of death includes believing that his or her thoughts can cause death, seeing death as temporary and gradual and a kind of sleep, and having some sense of the meaning of death. Having a concrete understanding of death is a characteristic of a school-age child's concept of death.

1. What does the nurse recognize as physical signs of approaching death? (Select all that apply.) a. Mottling of skin b. Decreased sleeping c. Cheyne-Stokes respirations d. Loss of the sense of hearing e. Decreased appetite and thirst

ANS: A, C, E Physical signs of approaching death include mottling of skin, Cheyne-Stokes respirations, and decreased appetite and thirst. Sleeping increases, not decreases, and hearing is the last sense to fail.

4. What characterizes a toddlers concept of death? (Select all that apply.) a. They are unable to comprehend an absence of life. b. They may recognize the fact of physical death. c. They understand the universality and inevitability of death. d. They are affected more by the change in lifestyle than the concept of death. e. They can only think about events in terms of their own frame of reference living.

ANS: A, D, E Toddlers are egocentric and can only think about events in terms of their own frame of reference living. Their egocentricity and vague separation of fact and fantasy make it impossible for them to comprehend the absence of life. Instead of understanding death, this age group is affected more by any change in lifestyle. Toddlers do not understand the universality and inevitability of death and do not recognize the fact of physical death.

The nurse is making a home visit 48 hours after the death of an infant from sudden infant death syndrome (SIDS). What intervention is an appropriate objective for this visit? a. Give contraceptive information. b. Provide information on the grief process. c. Reassure parents that SIDS is not likely to occur again. d. Thoroughly investigate the home situation to verify SIDS as the cause of death.

ANS: B A home visit after the death of an infant is an excellent time to help the parents with the grief process. The nurse can clarify misconceptions about SIDS and provide information on support services and coping issues. Giving contraceptive information is inappropriate unless requested by parents. Telling the parents that SIDS is not likely to occur again is a false reassurance to the family. Investigating the home situation to verify SIDS as the cause of death is not the nurses role; this would have been done by legal and social services if there were a question about the infants death.

The nurse is providing support to a family that is experiencing anticipatory grief related to their childs imminent death. What statement by the nurse is therapeutic? a. Your other children need you to be strong. b. You have been through a very tough time. c. His suffering is over; you should be happy. d. God never gives us more than we can handle.

ANS: B Acknowledging that the family has been through a very tough time validates the loss that the parents have experienced. It is nonjudgmental. After the death of a child, the parent recognizes the responsibilities to the rest of the family but needs to be able to experience the grief of the loss. Telling the parents what they should do is giving advice. The parent would not be happy that the child has died, and stating so is argumentative. The parents may be angry with God, or their religious beliefs may be unknown, so the nurse should not provide false reassurance by talking to them about God.

When communicating with dying children, what should the nurse remember? a. Adolescent children tend to be concrete thinkers. b. Games, art, and play provide a good means of expression. c. When children can recite facts, they understand the implications of those facts. d. If childrens questions direct the conversation, the assessment will be in

ANS: B Games, art, and play provide children a way to use their natural expressive means to stimulate dialogue. Adolescent children are abstract thinkers. Children may not understand the implication of facts just because they can recite them. The assessment is more complete when childrens questions direct the conversation. DIF: Cognitive Level: Analyzing REF: p. 796 TOP: Nursing Process: Evaluation

The nurse has attended a professional development program about palliative care for the pediatric population. What statement by the nurse should indicate a correct understanding of the program? a. Palliative care provides interventions that hasten death. b. Palliative care promotes the optimal functioning and quality of life. c. Palliative care does not provide pain and symptom management like hospice care. d. Palliative care is not well received in hospitals that provide end-of-life care for children.

ANS: B Palliative care is designed to promote optimal functioning and quality of life during the time the child has remaining. Palliative care does not provide interventions that are intended to hasten death. The care does provide pain and symptom management and is well received in hospitals that provide end-of-life care for children. DIF: Cognitive Level: Analyzing REF: p. 792

6. What characterizes a school-aged child's concept of death? (Select all that apply.) a. Have a mature understanding of death b. Can respond to logical explanations of death c. Personify death as the devil or the bogeyman d. Have a deeper understanding of death in a concrete sense e. Fear the mutilation and punishment associated with death

ANS: B, C, D, E A school-aged childs concept of death includes responding to logical explanations of death, personifying death as the devil or bogeyman, having a deeper understanding of death in a concrete sense, and fearing mutilation and punishment associated with death. Adolescents concept of death is a mature understanding of death.

A preschooler is found digging up a pet bird that was recently buried after it died. What is the best explanation for this behavior? a. He has a morbid preoccupation with death. b. He is looking to see if a ghost took it away. c. He needs reassurance that the pet has not gone somewhere else. d. The loss is not yet resolved, and professional counseling is needed.

ANS: C The preschooler can recognize that the pet has died but has difficulties with the permanence. Digging up the bird gives reassurance that the bird is still present. This is an expected response at this age. If the behavior persists, intervention may be required. DIF: Cognitive Level: Understanding REF: p. 813

The nurse understands that a school-age child may react to death with what reaction? a. Joking b. Having no reaction c. Fearing the unknown d. Seeing it as a distant event

ANS: C They tend to fear the expectation of the event more than its realization. Their fear of the unknown is greater than that of the known. They would not joke or have no reaction. Adolescents see death as a distant event. DIF: Cognitive Level: Understanding REF: p. 799

3. What characterizes an infants concept of death? (Select all that apply.) a. Death is seen as temporary. b. Death is seen as a departure, a kind of sleep. c. Death has no significance before 6 months of age. d. They believe that death is a consequence of their thoughts. e. Anxiety is not created by death but by loss, even temporary, of the parent.

ANS: C, E Infants have no concept of death before six months and anxiety is not created by death but by loss, even temporary, of the parent. Death seen as temporary, a departure, or a belief that death is a consequence of thoughts are characteristic of a preschool Childs concepts of death.

At which developmental period do children have the most difficulty coping with death, particularly if it is their own? a. Toddlerhood b. Preschool c. School age d. Adolescence

ANS: D Adolescents, because of their mature understanding of death, remnants of guilt and shame, and issues with deviations from normal, have the most difficulty coping with death. Toddlers and preschoolers are too young to have difficulty coping with their own death. They fear separation from their parents. School-age children fear the unknown such as the consequences of the illness and the threat to their sense of security. DIF: Cognitive Level: Understanding REF: p. 799

The nurse is teaching coping strategies to parents of a child with a chronic illness. What coping strategies should the nurse include? (Select all that apply.) a. Listen to the child. b. Accept the child's illness. c. Establish a support system. d. Learn to care for the child's illness one day at a time. e. Do not share information with the child about the illness.

A, B, C, D (Coping strategies for parents caring for a child with a chronic illness include listening to the child, accepting the child's illness, establishing a support system, and learning to care for the child's illness one day at a time. Information should be shared with the child about the illness.)

What are supportive interventions that can assist a preschooler with a chronic illness to meet developmental milestones? (Select all that apply.) 4 a. Encourage socialization. b. Encourage mastery of self-help skills. c. Provide devices that make tasks easier. d. Clarify that the cause of the child's illness is not his or her fault. e. Discuss planning for the future and how the condition can affect choices.

A, B, C, D (To encourage initiative, mastery of self-help skills should be encouraged, and devices should be provided that make tasks easier. To develop peer relationships, socialization should be encouraged. To develop body image, the fact that the cause of the child's illness is not the fault of the child should be emphasized. Discussing planning for the future and how the condition can affect choices is appropriate for an adolescent.)

The nurse is assessing coping behaviors of a family with a child with a chronic illness. What indicates avoidance coping behaviors? (Select all that apply.) a. Refuses to agree to treatment b. Avoids staff, family members, or child c. Is unable to discuss possible loss of the child d. Recognizes own growth through a passage of time e. Makes no change in lifestyle to meet the needs of other family members

A, B, C, E (Avoidance coping behaviors include refusing to agree to treatment; avoiding staff, family members, or child; unable to discuss possible loss of the child; and making no change in lifestyle to meet the needs of other family members. Recognizing ones own growth through a passage of time is an approach behavior.)

The nurse is assessing coping behaviors of a family with a child with a chronic illness. What indicates approach coping behaviors? (Select all that apply.) a. Plans realistically for the future b. Verbalizes possible loss of the child c. Uses magical thinking and fantasy d. Realistically perceives the child's condition e. Does not share the burden of the disorder with others

A, B, D (Approach coping behaviors include planning realistically for the future, verbalizing possible loss of a child, and realistically perceiving the child's behavior. Using magical thinking and fantasy is an avoidance behavior. The family should share the burden of the disorder with others as an approach behavior.)

How might the quality of life for a terminally ill child and his family be enhanced by nurses? a. Tell the family what is best. b. Leave the family alone to deal with their tragedy. c. Remain objective and uninvolved with family grieving. d. Advocate for and implement pain and symptom relief measures.

ANS: D By increasing personal remembering, the nurse can advocate for and provide the best possible care for the child and family. This is supportive for the family and helps the nurse reduce the stress of caregiving. If the nurse tells the family what is best, this removes the decision making from the parents. It also increases pressure on the nurse to be the expert. The nurse is in a supportive role. The nurse should not leave the family alone to deal with their tragedy. Becoming involved is an objective, deliberate choice. Ideally, the nurse achieves detached concern, which allows sensitive, understanding care because the nurse is sufficiently detached to make objective, rational decisions.

What finding by the nurse is most characteristic of chronic sorrow? a. Lack of acceptance of child's limitation b. Lack of available support to prevent sorrow c. Periods of intensified sorrow when experiencing anger and guilt d. Periods of intensified sorrow at certain landmarks of the child's development

D (Chronic sorrow is manifested by feelings of sorrow and loss that recur in waves over time. The sorrow is a response to the recognition of the child's limitations. The family should be assessed in an ongoing manner to provide appropriate support as their needs change. The sorrow is not preventable. The chronic sorrow occurs during the reintegration and acknowledgment stage.)

What nursing intervention is especially helpful in assessing feelings of parental guilt when a disability or chronic illness is diagnosed? a. Ask the parents if they feel guilty. b. Observe for signs of overprotectiveness. c. Talk about guilt only after the parents mention it. d. Discuss the meaning of the parents religious and cultural background.

D (Guilt may be associated with cultural or religious beliefs. Some parents are convinced that they are being punished for some previous misdeed. Others may see the disorder as a trial sent by God to test their religious beliefs. The nurse can help the parents explore their religious beliefs. On direct questioning, the parents may not be able to identify the feelings of guilt. It would be appropriate for the nurse to explore their adjustment responses. Overprotectiveness is a parental response during the adjustment phase. The parents fear letting the child achieve any new skill and avoid all discipline.)

The nurse outlines short- and long-term goals for a 10-year-old child with many complex health problems. Who should agree on these goals? a. Family and nurse b. Child, family, and nurse c. All professionals involved d. Child, family, and all professionals involved

D (In the home, the family is a partner in each step of the nursing process. The family priorities should guide the planning process. Both short- and long-term goals should be outlined and agreed on by the child, family, and professionals involved. Elimination of any one of these groups can potentially create a care plan that does not meet the needs of the child and family.)

What should the nurse determine to be the priority intervention for a family with an infant who has a disability? a. Focus on the child's disabilities to understand care needs. b. Institute age-appropriate discipline and limit setting. c. Enforce visiting hours to allow parents to have respite care. d. Foster feelings of competency by helping parents learn the special care needs of the infant.

D (It is important that the parents learn how to care for their infant so they feel competent. The nurse facilitates this by teaching special holding techniques, supporting breastfeeding, and encouraging frequent visiting and rooming in. The focus should be on the infants capabilities and positive features. Infants do not usually require discipline. As the child gets older, this is necessary, but it is not a priority intervention at this time. The nursing staff negotiates with the family about the need for respite care.)

What is the major health concern of children in the United States? a. Acute illness b. Chronic illness c. Congenital disabilities d. Nervous system disorders

B (An estimated 18% of children in the United States have a chronic illness or disability that warrants health care services beyond those usually required by children. Chronic illness has surpassed acute illness as the major health concern for children. Congenital disabilities exist from birth but may not be hereditary. These represent a portion of the number of children with chronic illnesses. Mental and nervous system disorders account for approximately 17% of chronic illnesses in children.)

What is the single most prevalent cause of disability in children and responsible for the recent increase in childhood disability? a. Cancer b. Asthma c. Seizures d. Heart disease

B (Asthma is the single most prevalent cause of disability in children and has been largely responsible for much of the recent increase in childhood disability.)

Families progress through various stages of reactions when a child is diagnosed with a chronic illness or disability. After the shock phase, a period of adjustment usually follows. This is often characterized by what response? a. Denial b. Guilt and anger c. Social reintegration d. Acceptance of the child's limitations

B (For most families, the adjustment phase is accompanied by several responses, including guilt, self-accusation, bitterness, and anger. The initial diagnosis of a chronic illness or disability often is met with intense emotion and characterized by shock and denial. Social reintegration and acceptance of the child's limitations are the culmination of the adjustment process.)

What is a major premise of family-centered care? a. The child is the focus of all interventions. b. Nurses are the authorities in the child's care. c. Parents are the experts in caring for their child. d. Decisions are made for the family to reduce stress.

C (As parents become increasingly responsible for their children, they are the experts. It is essential that the health care team recognize the family's expertise. In family-centered care, consistent attention is given to the effects of the child's chronic illness on all family members, not just the child. Nurses are adjuncts in the child's care. The nurse builds alliances with parents. Family members are involved in decision making about the child's physical care.)

What manifestation observed by the nurse is suggestive of parental overprotection? a. Gives inconsistent discipline b. Facilitates the child's responsibility for self-care of illness c. Persuades the child to take on activities of daily living even when not able d. Encourages social and educational activities not appropriate to the child's level of capability

A (Parental overprotection is manifested when the parents fear letting the child achieve any new skill, avoid all discipline, and cater to every desire to prevent frustration. Overprotective parents do not allow the child to assume responsibility for self-care of the illness. The parents prefer to remain in the role of total caregiver. The parents do not encourage the child to participate in social and educational activities.)

Match the concepts related to children with special health care needs to their definitions. a. Chronic illness b. Congenital disability c. Developmental disability d. Impairment e. Special needs 1. A loss or abnormality of structure or function 2. Any mental or physical disability that is manifested before the age of 18 years 3. A long-lasting or recurrent condition that interferes with daily functioning that persists for more than 3 months 4. A disability that has existed since birth but may not be hereditary 5. A condition requiring assistance for disabilities that may be medical, mental, or psychological

1. ANS: C 2. ANS: D 3. ANS: B 4. ANS: A 5. ANS: E

The nurse is planning care for a 3-year-old boy who has Down syndrome and is on continuous oxygen. He recently began walking around furniture. He is spoon fed by his parents and eats some finger foods. What goal is the most appropriate to promote normal development? a. Encourage mobility. b. Encourage assistance in self-care. c. Promote oral-motor development. d. Provide opportunities for socialization.

A (A major principle for developmental support in children with complex medical issues is that it should be flexible and tailored to the individual child's abilities, interests, and needs. This child is exhibiting readiness for ambulation. It is an appropriate time to provide activities that encourage mobility, for example, longer oxygen tubing. Parents should provide decreasing amounts of assistance with self-care as he is able to develop these skills. The boy is receiving oral foods and is eating finger foods. He has acquired this skill. Mobility is a new developmental task. Opportunities for socialization should be ongoing.)

The nurse is talking to the parent of a child with special needs. The parent has expressed worry about how to support the siblings at home. What suggestion is appropriate for the nurse to give to the parent? a. You should help the siblings see the similarities and differences between themselves and your child with special needs. b. You should explain that your child with special needs should be included in all activities that the siblings participate in even if they are reluctant. c. You should give the siblings many caregiving tasks for your child with special needs so the siblings feel involved. d. You should intervene when there are differences between your child with special needs and the siblings.

A (Appropriate information to give to a parent who wants to support the siblings of a child with special needs includes helping the siblings see the differences and similarities between themselves and the child with special needs to promote an understanding environment. The parent should be encouraged to allow the siblings to participate in activities that do not always include the child with special needs, to limit caregiving responsibilities, and to allow the children to settle their own differences rather than step in all the time.)

The parents of a child born with disabilities ask the nurse for advice about discipline. The nurses response should be based on remembering that discipline is which? a. Essential for the child b. Not needed unless the child's behavior becomes problematic c. Best achieved with punishment for misbehavior d. Too difficult to implement with a special needs child

A (Discipline is essential for the child. It provides boundaries on which she can test out her behavior and teaches her socially acceptable behaviors. The nurse should teach the parents ways to manage the child's behavior before it becomes problematic. Punishment is not effective in managing behavior.)

The parents of a child on a ventilator tell the nurse that their insurance company wants the child to be discharged. They explain that they do not want the child home under any circumstances. What principle should the nurse consider when working with this family? a. Desire to have the child home is essential to effective home care. b. Parents should not be expected to care for a technology-dependent child. c. Having a technology-dependent child at home is better for both the child and the family. d. Parents are not part of the decision-making process because of the costs of hospitalization.

A (Home care requires the family to manage the child's illness, including providing daily hands-on care, monitoring the child's medical condition, and educating others to care for the child. The child's home environment with the child's family is perceived as the best place for the child to be cared for. If the family does not want to or is not able to assume these responsibilities, other arrangements need to be investigated. The family is an essential part of the decision-making process. Without family involvement and support, the technology-dependent child will not be well cared for at home.)

For case management to be most effective, who should be recognized as the most appropriate case manager? a. Nurse b. Panel of experts c. Multidisciplinary team d. Insurance company

A (Nursing case managers are ideally suited to provide the care coordination necessary. Care coordination is most effective if a single person works with the family to accomplish the many tasks and responsibilities that are necessary. The family retains the role as primary decision maker. Most likely the insurance company will have a case manager focusing on the financial aspects of care. This does not include coordination of care to assist the family.)

One of the supervisors for a home health agency asks the nurse to give a family of a child with a chronic illness a survey evaluating the nurses and other service providers. How should the nurse recognize this request? a. Appropriate to improve quality of care b. Improper because it is an invasion of privacy c. Inappropriate unless nurses and other providers agree to participate d. Not acceptable because the family lacks remembering necessary to evaluate professionals

A (Quality assessment and improvement activities are essential for virtually all organizations. Family involvement in evaluating a home care plan can occur on several levels. The nurse can ask the family open-ended questions at regular intervals to assess their opinion of the effectiveness of care. Families should also be given an opportunity to evaluate the individual home care nurses, the home care agency, and other service providers periodically. Evaluation of the provision of care to the patient and family requires evaluation of the care provider, that is, the nurse. Quality-monitoring activities are required by virtually all health care agencies. During the evaluation process, the family is asked to provide their perceptions of care.)

A child's parents ask the nurse many questions about their child's illness and its management. The nurse does not know enough to answer all the questions. What nursing action is most appropriate at this time? a. Tell them, I don't know, but I will find out. b. Suggest that they ask the physician these questions. c. Explain that the nurse cannot be expected to know everything. d. Answer questions vaguely so they do not lose confidence in the nurse.

A (Questions from parents should be answered in a straightforward manner. Stating I don't know or Ill find out is better than pretending to know or giving excuses. Suggesting that they ask the physician these questions is not supportive of the family. The nurses role is to assist the parents in obtaining accurate information about their child's illness and its management. Although the nurse cannot be expected to know everything, it is an unprofessional attitude to state this. Nurses must provide accurate information to the extent possible. Vague answers are not helpful to the family.)

What nursing intervention is most appropriate in promoting normalization in a school-age child with a chronic illness? a. Give the child as much control as possible. b. Ask the child's peer to make the child feel normal. c. Convince the child that nothing is wrong with him or her. d. Explain to parents that family rules for the child do not need to be the same as for healthy siblings.

A (The school-age child who is ill may be forced into a period of dependency. To foster normalcy, the child should be given as much control as possible. It is unrealistic for one individual to make the child feel normal. The child has a chronic illness, so it would be unacceptable to convince the child that nothing is wrong. The family rules should be similar for each of the children in a family. Resentment and hostility can arise if different standards are applied to each child.)

The potential effects of chronic illness or disability on a child's development vary at different ages. What developmental alteration is a threat to a toddlers normal development? a. Hindered mobility b. Limited opportunities for socialization c. Childs sense of guilt that he or she caused the illness or disability d. Limited opportunities for success in mastering toilet training

A (Toddlers are acquiring a sense of autonomy, developing self-control, and forming symbolic representation through language acquisition. Mobility is the primary tool used by toddlers to experiment with maintaining control. Loss of mobility can create a sense of helplessness. Toddlers do not socialize. They are sensitive to changes in family routines. A sense of guilt is more likely to occur in a preschooler. Toilet training is not usually mastered until the end of the toddler period.)

The nurse notes that the parents of a critically ill child spend a large amount of time talking with the parents of another child who is also seriously ill. They talk with these parents more than with the nurses. How should the nurse interpret this situation? a. Parent-to-parent support is valuable. b. Dependence on other parents in crisis is unhealthy. c. This is occurring because the nurses are unresponsive to the parents. d. This has the potential to increase friction between the parents and nursing staff.

A (Veteran parents share experiences that cannot be supplied by other support systems. They have known the stress related to diagnosis, have weathered the many transition times, and have a practical remembering of resources. The parents can be mutually supportive during times of crisis. Nursing staff cannot provide the type of support that is realized from other parents who are experiencing similar situations. Friction should not exist between the nursing staff and the family of the child who is critically ill.)

The family and child have decided that hospice care best meets their needs during the terminal phase of illness. The nurse recognizes that the parents understand the principles of this care when they make which statement? a. It will be good to be at home and care for our child. b. What a relief it will be not to need any more medicines. c. We are going to miss the support of the hospice team when our child dies. d. We know that once hospice care starts, we will not be able to return to the hospital if the care is difficult.

ANS: A A major principle of hospice care is that the family members are the principal caregivers and are supported by a team of professionals. Pain and symptom management is a priority. The family and visiting nurses administer medications to keep the child as pain and symptom free as possible. The hospice team provides bereavement support to help the family in the postdeath adjustment. This may last for up to a year or more. If the family decides they can no longer care for the child at home, readmission to a freestanding hospice or hospital is possible. DIF: Cognitive Level: Applying REF: p. 800

When is an autopsy required? a. In the case of a suspected suicide b. When a person has a known terminal illness c. With a hospice patient who dies at home d. With the victim of a motor vehicle collision

ANS: A Autopsy is usually required in cases of unexplained death, violent death, or suspected suicide. In other instances it may be optional, and parents should be informed. The cause of death is not unknown in a person with a known terminal illness, a hospice patient at home, or a victim of a motor vehicle collision. Autopsy can be requested by family, but it is not required. DIF: Cognitive Level: Applying REF: p. 812

What statement is most descriptive of a school-age childs reaction to death? a. Very interested in funerals and burials b. Little understanding of words such as forever c. Imagine the deceased person to be still alive d. Can explain death from a religious or spiritual point of view

ANS: A School-age children are interested in naturalistic and physiologic explanations of why death occurs and what happens to the body. School-age children do have an established concept of forever and have a deeper understanding of death in a concrete manner. Adolescents may explain death from a religious or spiritual point of view. DIF: Cognitive Level: Understanding REF: p. 816

A 12-year-old child has failed several courses of chemotherapy. An experimental drug is available that his parents want him to receive. He has told his parents and the oncologists that he is ready to die and does not want any more chemotherapy. The nurse recognizes what to be true? a. Parents and child both need support in the decision making. b. Twelve-year-olds are minors and cannot give consent or refuse treatments. c. The oncologists needs to make the decision because the parents and child disagree. d. The parents have the right and responsibility to make decisions for their children younger than age 18 years.

ANS: A This is a family issue that requires support to help both parents and child resolve the conflict. Because the child has little chance of survival, many institutions support the childs right to refuse or assent to therapy. The institution can obtain a court order to support the childs decision if verified by the oncologists. Twelve-year-olds can give consent for therapy under certain conditions, including being an emancipated minor and receiving therapy for birth control and sexually transmitted infections. Right to self-determination is also accepted if the child is fully aware of the consequences of the actions. The practitioners cannot take the responsibility for decision making from the parent or child. Parents have the responsibility for decision making, but certain circumstances do limit their authority.

What nursing intervention is most appropriate when providing comfort and support for a child when death is imminent? a. Limit care to essentials. b. Avoid playing music near the child. c. Whisper to the child instead of using a normal voice. d. Explain to the child the need for constant measurement of vital signs.

ANS: A When death is imminent, care should be limited to interventions for palliative care. Music may be used to provide comfort to the child. The nurse should speak to the child in a clear, distinct voice. Vital signs do not need to be measured frequently.

A child in the terminal stage of cancer has frequent breakthrough pain. Nonpharmacologic methods are not helpful, and the child is exceeding the maximum safe dose for opiate administration. What approach should the nurse implement? a. Add acetaminophen for the breakthrough pain. b. Titrate the opioid medications to control the childs pain as specified in the protocol. c. Notify the practitioner that immediate hospitalization is indicated for pain management. d. Help the parents and child understand that no additional medication can be given because of the risk of respiratory depression.

ANS: B The child on long-term opioid management can become tolerant to the drugs. Also, increasing amounts of drugs may be necessary for disease progression. It is important to recognize that there is no maximum dosage that can be given to control pain. Acetaminophen will offer little additional pain control; it is useful for mild and moderate pain. Immediate hospitalization is not necessary; increased dosages of pain medications can be administered in the home environment. The principle of double effect allows for a positive interventionrelief of paineven if there is a foreseeable possibility that death may be hastened. DIF: Cognitive Level: Applying REF: p. 802

What is a principle of palliative care that can be included in the care of children? a. Maintenance of curative therapy b. Child and family as the unit of care c. Exclusive focus on the spiritual issues the family faces d. Extensive use of opiates to ensure total pain control

ANS: B The principles of palliative care involve a multidisciplinary approach to the management of a terminal illness or the dying process that focuses on symptom control and support rather than on cure or life prolongation in the absence of the possibility of a cure. In pediatric palliative care, the focus of care is on the family. Palliative care requires the transition from curative to palliative care. The transition occurs when the likelihood of cure no longer exists. Spiritual issues are just one of the foci of palliative care. The multidisciplinary team focuses on physical, emotional, and social issues as well. Pain control is a priority in palliative care. The use of opiates is balanced with the side effects caused by this class of drugs.

An 8-year-old girl has been uncooperative and angry since the diagnosis of cancer was made. Her parents tell the nurse that they do not know what to do because she is always so mad at us. What nursing action is most appropriate at this time? a. Explain to child that anger is not helpful. b. Help the parents deal with her anger constructively. c. Ask the parents to find out what she is angry about. d. Encourage the parents to ignore the anger at this time.

ANS: B To school-age children, chronic illness and dying represent a loss of control. This threat to their sense of security and ego strength can be manifested by verbal uncooperativeness. The child can be viewed as impolite, insolent, and stubborn. The best intervention is to encourage children to talk about feelings and give control where possible. Verbal explanations would not be heard by the child. The child may not be cognizant of the anger. Ignoring the anger will not help the child gain some control over the events. DIF: Cognitive Level: Applying REF: p. 799

A critically injured child has died and is being removed from a ventilator in the pediatric intensive care unit. What is a priority nursing intervention for the family at this time? a. Ensure that parents are in the waiting room while the ventilator is removed. b. Help the parents understand that the child is already dead and no further interventions are necessary. c. Control the environment around the child and family to provide privacy. d. Encourage them to wait to see their child until the funeral home has prepared the body.

ANS: C Around the time of death, nursing care can be invaluable to the parents. The nurse should attempt to control the environment to ensure that the family and child have privacy. Other individuals such as clergy can be present if the family wishes. Attention to religious and cultural rituals may be important to them. The family should decide where they would like to be during removal from the ventilator. The family should be allowed to be with the child if they wish rather than waiting until the funeral home has prepared the body. Explain all interventions used for the child before death. DIF: Cognitive Level: Analyzing REF: p. 810

What explanation best describes how preschoolers react to the death of a loved one? a. Grief is acute but does not last long at this age. b. Children this age are too young to have a concept of death. c. Preschoolers may feel guilty and responsible for the death. d. They express grief in the same way that the adults in the preschoolers life are expressing grief.

ANS: C Because of egocentricity, the preschooler may feel guilty and responsible for the death. Preschoolers may need to distance themselves from the loss. Giggling or joking and regression to earlier behaviors may help them until they incorporate the loss. The preschoolers concept of death is more a special sleep or departure. DIF: Cognitive Level: Understanding REF: p. 798

At which age do most children have an adult concept of death as being inevitable, universal, and irreversible? a. 4 to 5 years b. 6 to 8 years c. 9 to 11 years d. 12 to 16 years

ANS: C By age 9 or 10 years, children have an adult concept of death. They realize that it is inevitable, universal, and irreversible. Preschoolers and young school-age children are too young to have an adult concept of death. Adolescents have a mature understanding of death. DIF: Cognitive Level: Understanding REF: p. 816

The sibling of a 4-year-old girl dies from sudden infant death syndrome. The parents are concerned because the 4-year-old girl showed more outward grief when her cat died than now. How should the nurse explain this reaction to the parents? a. The child is not old enough to have a concept of death. b. This suggests maladaptive coping, and referral is needed for counseling. c. The death may be so painful and threatening that the child must deny it for now. d. The child is not old enough to have formed a significant attachment to her sibling.

ANS: C Children of this age believe that their thoughts can cause death. The child may feel guilty and responsible. The loss may be so deep, painful, and threatening that the child needs to deny it for a time. Denial is within the range of a normal response to the death of a sibling. Counseling is not indicated at this time. Denial is also characteristic of the childs developmental level. These children do have a concept of death, seeing it as a separation. The child also would have formed an attachment to the sibling, who was in the house and sharing the parents time and attention.

he nurse is often the individual who is in the optimum position to suggest tissue donation to a family (after consultation with the practitioner). What will occur if a family chooses organ or tissue donation? a. The funeral will be delayed. b. Cremation is the preferred method of burial. c. Written consent is required for tissue or organ donation. d. An open casket cannot be used subsequent to this procedure.

ANS: C Organ and tissue donation cannot proceed without the familys written informed consent. There is usually no delay in the funeral. Organs are usually retrieved before actual death, and tissue must be removed soon after. No obvious disfigurement of the body occurs, and an open casket can be used for the funeral. DIF: Cognitive Level: Analyzing REF: p. 812

Parents tell the nurse they do not want to let their school-age child know his illness is terminal. What response should the nurse make to the parents? a. Have you discussed this with your health care provider? b. I would do the same thing in your position; it is better the child doesnt know. c. I understand you want to protect your child, but often children realize the seriousness of their illness. d. I praise you for that decision; it can be so difficult to be truthful about the seriousness of your sons illness.

ANS: C Terminally ill children develop an awareness of the seriousness of their diagnosis even when protected from the truth. Acknowledging parents feelings but giving them truthful information is the appropriate response. Asking about discussing this with the health care provider is avoiding the issue. Sharing your own feelings by stating I would do the same thing and giving praise for the decision is nontherapeutic. DIF: Cognitive Level: Applying REF: p. 795

A school-age child is diagnosed with a life-threatening illness. The parents want to protect their child from knowing the seriousness of the illness. The nurse should provide which explanation? a. This attitude is helpful to give parents time to cope. b. This will help the child cope effectively by denial. c. Terminally ill children know when they are seriously ill. d. Terminally ill children usually choose not to discuss the seriousness of their illness.

ANS: C The child needs honest and accurate information about the illness, treatments, and prognosis. Because of the increased attention of health professionals, children, even at a young age, realize that something is seriously wrong and that it involves them. Thus, denial is ineffective as a coping mechanism. The nurse should help parents understand the importance of honesty. Parents may need professional support and guidance from a nurse or social worker in this process. Children will usually tell others how much information they want about their condition. DIF: Cognitive Level: Analyzing REF: p. 795

Parents ask the nurse, When should palliative care be initiated? What is the best response by the nurse? a. When curative care is not feasible. b. When the childs prognosis is uncertain. c. It should be included along the continuum of care. d. It should begin when curative treatments are no longer appropriate.

ANS: C The current approach by palliative care experts promotes the inclusion of palliative care along the continuum of care from diagnosis through treatment, not merely at the end of life. It should not wait to be initiated when curative care is not feasible, the childs prognosis is uncertain, or curative treatments are no longer appropriate. DIF: Cognitive Level: Applying REF: p. 791

What factor is most important for parents implementing do not resuscitate (DNR) orders? a. Parents beliefs about euthanasia b. Presence of other children in the home c. Experiences of the health care team with other children in this situation d. Acknowledgment by health care team that child has no realistic chance for cure

ANS: D Earlier implementation of DNR orders, use of less aggressive therapies, and greater provision of palliative care measures are associated with an honest appraisal of the childs condition. Euthanasia involves an action carried out by a person other than the patient to end the life of the patient suffering from a terminal condition. DNR orders do not involve euthanasia but give permission for health care providers to allow the child to die without intervention. Parents state that regardless of the number of children they have, the death of a child is a new experience and nothing can prepare them for it. Health professionals may base their discussions with families on prior experiences, but families base their decision on an honest appraisal of their childs condition. DIF: Cognitive Level: Applying REF: p. 794

A 12-year-old boy is in the final phase of dying from leukemia. He tells the nurse who is giving him opiates for pain that his grandfather is waiting for him. How should the nurse interpret this situation? a. The boy is experiencing side effects of the opiates. b. The boy is making an attempt to comfort his parents. c. He is experiencing hallucinations resulting from brain anoxia. d. He is demonstrating readiness and acceptance that death is near.

ANS: D Near the time of death, many children experience visions of angels or people and talk with them. The children mention that they are not afraid and that someone is waiting for them. If the child has built a tolerance to the opioids, side effects are not likely. At this time, many children do begin to comfort their families and tell them that they are not afraid and are ready to die, but the visions usually precede this stage. There is no evidence of tissue hypoxia. DIF: Cognitive Level: Applying REF: p. 798

Several nurses tell their nursing supervisor that they want to attend the funeral of a child for whom they had cared. They say they felt especially close to both the child and the family. The supervisor should recognize that attending the funeral serves what purpose? a. It is improper because it increases burnout. b. It is inappropriate because it is unprofessional. c. It is proper because families expect this expression of concern. d. It is appropriate because it can assist in the resolution of personal grief.

ANS: D Some nurses find shared remembrance rituals useful in resolving grief. Attending funeral services can be a supportive act for both the family and the nurse. Burnout is a state of physical, emotional, and mental exhaustion. It results from prolonged involvement with individuals in situations that are emotionally demanding. Attending the funeral of a child can be an effective coping measure. Attending funerals does not detract from the professionalism of care. Although it is important to consider the familys expectations, the act of attending the funeral provides a sense of closure with the family and facilitates the grief process for the nurse. DIF: Cognitive Level: Analyzing REF: p. 819

A 7-year-old child is in the end stages of cancer. The parents ask you how they will know when death is imminent. What physical sign is indicative of approaching death? a. Hunger b. Tachycardia c. Increased thirst d. Difficulty swallowing

ANS: D The child begins to have difficulty swallowing as he or she approaches death. The childs appetite will decrease, and he or she will take only small bites of favorite foods or sips of fluids in the final few days. The pulse rate will slow. DIF: Cognitive Level: Analyzing REF: p. 806

The nurse has been visiting an adolescent with recently acquired tetraplegia. The teens mother tells the nurse, I'm sick of providing all the care while my husband does whatever he wants to, whenever he wants to do it. What reaction should be the nurses initial response? a. Refer the mother for counseling. b. Listen and reflect the mothers feelings. c. Ask the father in private why he does not help. d. Suggest ways the mother can get her husband to help.

B (It is appropriate for the nurse to reflect with the mother about her feelings, exploring solutions such as an additional home health aide to help care for the child and provide respite for the mother. It is inappropriate for the nurse to agree with the mother that her husband is not helping enough. This judgment is beyond the role of the nurse and can undermine the family relationship. Counseling, if indicated, would be necessary for both parents. A support group for caregivers may be indicated. The nurse should not ask the father in private why he does not help or suggest way the mother can get her husband to help. These interventions are based on the mothers perceptions; the father may have a full-time job and other commitments. The parents may need an unbiased third person to help them through the negotiation of their new parenting responsibilities.)

A 5-year-old child will be starting kindergarten next month. She has cerebral palsy, and it has been determined that she needs to be in a special education classroom. Her parents are tearful when telling the nurse about this and state that they did not realize her disability was so severe. What is the best interpretation of this situation? a. This is a sign the parents are in denial. b. This is a normal anticipated time of parental stress. c. The parents need to learn more about cerebral palsy. d. The parents expectations are too high.

B (Parenting a child with a chronic illness can be stressful. At certain anticipated times, parental stress increases. One of these identified times is when the child begins school. Nurses can help parents recognize and plan interventions to work through these stressful periods. The parents are not in denial; rather, they are responding to the child's placement in school. The parents are not exhibiting signs of a remembering deficit; this is their first interaction with the school system with this child.)

A feeling of guilt that the child caused the disability or illness is especially common in which age group? a. Toddler b. Preschooler c. School-age child d. Adolescent

B (Preschoolers are most likely to be affected by feelings of guilt that they caused the illness or disability or are being punished for wrongdoings. Toddlers are focused on establishing their autonomy. The illness fosters dependency. School-age children have limited opportunities for achievement and may not be able to understand limitations. Adolescents face the task of incorporating their disabilities into their changing self-concept.)

The nurse has been assigned as a home health nurse for a child who is technology dependent. The nurse recognizes that the family's background differs widely from the nurses own. The nurse believes some of their lifestyle choices are less than ideal. What nursing intervention is most appropriate to institute? a. Change the family. b. Respect the differences. c. Assess why the family is different. d. Determine whether the family is dysfunctional.

B (Respect for varied family structures and for racial, ethnic, cultural, and socioeconomic diversity among families is essential in home care. The nurse must assess and respect the family's background and lifestyle choices. It is not appropriate to attempt to change the family. The nurse is a guest in the home and care of the child. The family and the values held by the cultural group prevail. The nurse may assess why the family is different to help the nurse and other health professionals understand the differences. It is not appropriate to determine whether the family is dysfunctional.)

A 16-year-old boy with a chronic illness has recently become rebellious and is taking risks such as missing doses of his medication. What should the nurse explain to his parents? a. That he needs more discipline b. That this is a normal part of adolescence c. That he needs more socialization with peers d. That this is how he is asking for more parental control

B (Risk taking, rebelliousness, and lack of cooperation are normal parts of adolescence, during which young adults are establishing independence. If the parents increase the amount of discipline, he will most likely be more rebellious. More socialization with peers does not address the problem of risk-taking behavior.)

The nurse is assessing the coping behaviors of the parents of a child recently diagnosed with a chronic illness. What behavior should the nurse consider an approach behavior that results in movement toward adjustment? a. Being unable to adjust to a progression of the disease or condition b. Anticipating future problems and seeking guidance and answers c. Looking for new cures without a perspective toward possible benefit d. Failing to recognize the seriousness of the child's condition despite physical evidence

B (The parents who anticipate future problems and seek guidance and answers are demonstrating approach behaviors. These are positive actions in caring for their child. Being unable to adjust, looking for new cures, and failing to recognize the seriousness of the child's condition are avoidance behaviors. The parents are moving away from adjustment or exhibiting maladaptation to the crisis of a child with chronic illness or disability.)

The nurse is planning to use an interpreter with a non English-speaking family. What should the nurse plan with regard to the use of an interpreter? (Select all that apply.) a. Use a family member. b. The nurse should speak slowly. c. Use an interpreter familiar with the family's culture. d. The nurse should speak only a few sentences at a time. e. The nurse should speak to the interpreter during interactions.

B, C, D (When parents who do not speak English are informed of their child's chronic illness, interpreters familiar with both their culture and language should be used. The nurse should speak slowly and only use a few sentences at a time. Children, family members, and friends of the family should not be used as translators because their presence may prevent parents from openly discussing the issues. The nurse should speak to the family, not the interpreter.)

The nurse asks the mother of a child with a chronic illness many questions as part of the assessment. The mother answers several questions, then stops and says, I don't know why you ask me all this. Who gets to know this information? The nurse should respond in what manner? a. Determine why the mother is so suspicious. b. Determine what the mother does not want to tell. c. Explain who will have access to the information. d. Explain that everything is confidential and that no one else will know what is said.

C (Communication with the family should not be invasive. The nurse needs to explain the importance of collecting the information, its applicability to the child's care, and who will have access to the information. The mother is not being suspicious and is not necessarily withholding important information. She has a right to understand how the information she provides will be used. The nurse will need to share, through both oral and written communication, clinically relevant information with other involved health professionals.)

What intervention is most appropriate for fostering the development of a school-age child with disabilities associated with cerebral palsy? a. Provide sensory experiences. b. Help develop abstract thinking. c. Encourage socialization with peers. d. Give choices to allow for feeling of control.

C (Peer interaction is especially important in relation to cognitive development, social development, and maturation. Cognitive development is facilitated by interaction with peers, parents, and teachers. The identification with those outside the family helps the child fulfill the striving for independence. Sensory experiences are beneficial, especially for younger children. School-age children are too young for abstract thinking. Giving school-age children choices is always an important intervention. Providing structured choices allows for a feeling of control.)

What behavior seen in children should be addressed by the nurse who is providing care to a child with a chronic illness? a. An infant who is uncooperative b. A toddler who expresses loneliness c. A preschooler who refuses to participate in self-care d. An adolescent who is showing independence

C (Preschoolers thrive on being independent and are in the phase of gaining autonomy, so they want to perform as many self-care tasks as possible. If a preschooler is refusing to participate in self-care activities, then the home health nurse should address this. Infants are uncooperative by nature, and toddlers do not understand the concept of loneliness, so these are not observations that would need to be addressed. Adolescents are always striving for independence, so this is a normal observation; if the adolescent were becoming more dependent on family, it might require intervention.)

An adolescent with long-term, complex health care needs will soon be discharged from the hospital. The nurse case manager has been assigned to the teen and family. The adolescents care involves physical therapy, occupational therapy, and speech therapy in addition to medical and nursing care. Who should be the decision maker in the adolescents care? a. Adolescent b. Nurse case manager c. Adolescent and family d. Multidisciplinary health care team

C (The extent to which children are involved in their own care and decision making depends on many factors, including the child's developmental age, level of interest, physical ability, and parental support. If the adolescent is developmentally age appropriate, then decision making should be the responsibility of child and family. Family needs to be involved because they will be caring for the adolescent in the home. Health care providers have necessary input into the care of the child, but ultimate decision making rests with the adolescent and family.)

When communicating with other professionals about a child with a chronic illness, what is important for nurses to do? a. Ask others what they want to know. b. Share everything known about the family. c. Restrict communication to clinically relevant information. d. Recognize that confidentiality is not possible in home care.

C (The nurse needs to share, through both oral and written communication, clinically relevant information with other involved health professionals. Asking others what they want to know and sharing everything known about the family are inappropriate measures. Patients have a right to confidentiality. Confidentiality permits the disclosure of information to other health professionals on a need-to-know basis.)

The nurse observes that a seriously ill child passively accepts all painful procedures. The nurse should recognize that this is most likely an indication that the child is experiencing what emotional response? a. Hopefulness b. Chronic sorrow c. Belief that procedures are a deserved punishment d. Understanding that procedures indicate impending death

C (The nurse should be particularly alert to a child who withdraws and passively accepts all painful procedures. This child may believe that such acts are inflicted as deserved punishment for being less worthy. A child who is hopeful is mobilized into goal-directed actions. This child would actively participate in care. Chronic sorrow is the feeling of sorrow and loss that recurs in waves over time. It is usually evident in the parents, not in the child. The seriously ill child would actively participate in care. Nursing interventions should be used to minimize the pain.)

Parents ask for help for their other children to cope with the changes in the family resulting from the special needs of their sibling. What strategy does the nurse recommend? a. Explain to the siblings that embarrassment is unhealthy. b. Encourage the parents not to expect siblings to help them care for the child with special needs. c. Provide information to the siblings about the child's condition only as requested. d. Invite the siblings to attend meetings to develop plans for the child with special needs.

D (Siblings should be invited to attend meeting to be part of the care team for the child. They can learn about an individualized education plan and help design strategies that will work at home. Embarrassment may be associated with having a sibling with a chronic illness or disability. Parents must be able to respond in an appropriate manner without punishing the sibling. The parents may need assistance with the care of the child. Most siblings are positive about the extra responsibilities. Parents need to inform the siblings about the child's condition before a nonfamily member does so. The parents do not want the siblings to fantasize about what is wrong with the child.)

A child with a serious chronic illness will soon go home. The case manager requests that the family provide total care for the child for a couple of days while the child is still hospitalized. How should the request be viewed? a. Improper because of legal issues b. Supportive because families are usually eager to get involved c. Unacceptable because the family will have to assume the care soon enough d. Important because it can be beneficial to the transition from hospital to home

D (This type of groundwork is essential for the family. Adequate family training and preparation will assist in the child's transition home. The nursing staff in the hospital is responsible for the child's care. The family will provide the care with assistance as needed. Although parents are eager to be involved, the purpose of this intervention is the development of family competency and confidence that they are capable. Arrangements for respite care are important for the family both during hospitalizations and while the child is at home.)