Chapter 36: The Child with a Chronic Condition or Terminal Illness McKinney: Evolve Resources for Maternal-Child Nursing, 5th Edition

The parents of a school-age child are told that their child is diagnosed with leukemia. As the nurse caring for this child, what is the expected first response of the parents to the diagnosis of chronic illness in their child?

a. Anger and resentment

b. Sorrow and depression

c. Shock and disbelief

d. Acceptance and adjustment

ANS: C Shock and disbelief

According to Kübler-Ross, denial is the initial stage of the grieving process when an individual reacts with shock and disbelief to the diagnosis of chronic illness. The other responses are also part of the grieving process although not usually the initial response.

A nurse is caring for a dying child. What action by the nurse best meets the the primary concern of the parents?

a. Giving the child pain medication on a schedule

b. Placing the child on fall and safety precautions

c. Providing the child with favorite foods when requested

d. Ensuring the child gets the minimum fluid requirement

ANS: A Giving the child pain medication on a schedule

The primary concern of all parents of dying children is the possibility of their child feeling pain. The nurse works vigilantly to assess and treat the child's pain. The other options are also important considerations but usually not the priority concern.

In order to minimize the negative effects of illness and hospitalization on an infant, the nurse focuses care on which of the following?

a. Bodily injury and pain

b. Separation from caregivers and fear of strangers

c. Loss of control and altered body image

d. The unknown and being left alone

ANS: B Separation from caregivers and fear of strangers

The major fear of infants during illness and hospitalization are separation from caregivers and fear of strangers. Bodily injury and pain are fears of preschool and school-age children. Loss of control is a fear of children from the preschool period through adolescence. Altered body image applies to adolescents. Fear of the unknown and being left alone are applicable to preschoolers.

What corresponds to a 5-year-old child's understanding of death?

a. Loss of a caretaker

b. Reversible and temporary

c. Permanent

d. Inevitable

ANS: B Reversible and temporary

Children in early childhood (2 to 7 years old) view death as reversible and temporary. Loss of a caretaker corresponds to the infant/toddler understanding of death. The school-age child and adolescent understand that death is permanent. The adolescent understands death not only as permanent but also inevitable.

The nurse is counseling the family of a 12-month-old child who has lost his mother in a car accident. How should you explain to the father what the child's understanding of death is, related to theories of growth and development?

a. Temporary

b. Permanent

c. Loss of caretaker

d. Punishment

ANS: C Loss of caretaker

Infants and toddlers view death as loss of a caretaker. The preschool-age child views death as temporary. The school-age child and adolescent understand the permanence of death. The preschool-age child facing impending death may view his or her condition as punishment for behaviors or thoughts.

How can chronic illness and frequent hospitalizations affect the psychosocial development of a toddler?

a. They can create a distortion or differentiation of self from parent.

b. They can interfere with the development of autonomy.

c. They can interfere with the acquisition of language, fine motor, and self-care skills.

d. They can create feelings of inadequacy.

ANS: B They can interfere with the development of autonomy.

Chronic illness may interfere in the development of autonomy, which is the major psychosocial task of the toddler. The infant with a chronic illness may have distortion of differentiation of self from parents. Chronic illness with frequent hospitalizations can inhibit the acquisition of language, motor, and self-care skills in the preschool-age child. Feelings of inadequacy and inferiority can occur if independence is compromised by chronic illness in the school-age child.

How can chronic illness and frequent hospitalizations affect the psychosocial development of an adolescent?

a. They can lead to feelings of inadequacy.

b. They can interfere with parental attachment.

c. They can block the development of identity.

d. They can prevent the development of imagination.

ANS: C They can block the development of identity.

Development of identity is the task of the adolescent. Inadequacy and inferiority refer to the school-age period. Parental attachment is a task of the infant. Development of imagination occurs in the preschool period.

What is an important focus of nursing care for the dying child and his or her family?

a. Nursing care should be organized to minimize contact with the child.

b. Adequate oral intake is crucial to the dying child.

c. Families should be taught that hearing is the last sense to stop functioning before death.

d. It is best for the family if nursing care takes place during periods when the child is alert.

ANS: C Families should be taught that hearing is the last sense to stop functioning before death.

Families should be encouraged to talk to the child because verbal communication and physical touch are important both for the family and child. Nursing care should minimize disruptions but not contact. When a child is dying, fluids should be based on the child's requests, with a focus on comfort and preventing a dry mouth. The times when the child is alert should be devoted to family contacts.

What is the most appropriate response to a school-age child who asks if she can talk to her dying sister?

a. "You need to talk loudly so she can hear you."

b. "Holding her hand would be better because at this point she can't hear you."

c. "Although she can't hear you, she can feel your presence so sit close to her."

d. "Even though she will probably not answer you, she can still hear what you say to her."

ANS: D "Even though she will probably not answer you, she can still hear what you say to her."

Hearing is the last sense to cease before death. Talking to the dying child is important both for the child and the family. The sense of hearing is intact before death and there is no need to speak loudly. The sibling should be encouraged to speak to the child, as well as hold the child's hand. The sibling should be encouraged to sit close and speak to the dying child.

What is the priority goal for the child with a chronic illness?

a. To maintain the intactness of the family

b. To eliminate all stressors

c. To achieve complete wellness

d. To obtain the highest level of wellness

ANS: D To obtain the highest level of wellness

To obtain the highest level of health and function possible is the priority goal of nursing children with a chronic illness. Maintaining intactness of the family is a great goal, but it is for the family, not the child. Eliminating all stressors and achieving complete wellness are not realistic.

What is the predominant trait of the resilient family associated with chronic illness?

a. Social separation

b. Family flexibility

c. Family cohesiveness

d. Clear family boundaries

ANS: C Family cohesiveness

Family cohesiveness is the predominant trait of the resilient family. Social integration, not separation is another trait. Family flexibility and clear family boundaries are other traits of the resilient family but not the predominant one.

Many parents who have children diagnosed with a chronic illness experience recurrent feelings of grief, loss, and fear related to the child's condition and loss of the ideal healthy child. The nurse recognizes this process as

a. anticipatory grieving.

b. chronic sorrow.

c. bereavement.

d. illness trajectory.

ANS: B chronic sorrow.

The stated recurrent feelings define chronic sorrow, which is considered a normal process involving grief that may never be resolved. Anticipatory grieving is the process of mourning, coping, interacting, planning, and psychosocial reorganization that is begun as a response to the impending loss of a loved one. Bereavement is defined as the objective condition or state of loss. Illness trajectory is defined as the impact of the disease or condition on all family members, physiologic unfolding of the disease, and work organization done by the family to cope.

What is a priority nursing diagnosis for the preschool child with chronic illness?

a. Risk for delayed growth and development related to chronic illness or disability

b. Chronic pain related to frequent injections and invasive procedures

c. Anticipatory grieving related to impending death

d. Anxiety related to frequent hospitalizations

ANS: A . Risk for delayed growth and development related to chronic illness or disability

This is the priority nursing diagnosis that is appropriate for the majority of chronic illnesses. The child may or may not have frequent injections and invasive procedures. A chronic illness is one that does not have a cure. It does not mean the child will die prematurely. Frequent hospitalizations are not required for all chronic illnesses.

The parents of a chronic illness say, "Living with this disease is really hard; it's not fair." What response by the nurse is best?

a. "Tell me about what is hard for you."

b. "I know exactly how you must feel."

c. "I know a local support group for families."

d. "I am going to ask the grief counselor to meet with you."

ANS: A "Tell me about what is hard for you."

The first step in supporting families and helping them deal with chronic sorrow is to listen to and recognize their pain. Each individual's perception of a situation is different. A nurse can never know exactly how parents feel about having a child with a chronic illness. The family may welcome involvement in a support group or meeting with a counselor, but that should not be the first action.

Identify the most appropriate nursing response to a parent who tells the nurse, "I don't want my child to know she is dying."

a. "I shall respect your decision. I won't say anything to your child."

b. "Don't you think she has a right to know about her condition?"

c. "Would you like me to arrange for the provider to speak with your child?"

d. "I'll answer any questions she asks me as honestly as I can."

ANS: D "I'll answer any questions she asks me as honestly as I can."

Nurses can inform parents that they will not initiate any discussion with the child but that they intend to respond openly and honestly if and when the child initiates such a discussion. As the caregiver and advocate, the nurse should first meet the child's needs. Asking the parent if the child has the right to know is judgmental and could affect the nurse's relationship with the child's parents. Having the provider speak with the child does not address the parent's concerns or the nurse's responsibility.

Which activity should the nurse implement for the toddler hospitalized with a chronic illness to promote autonomy?

a. Provide opportunities for play

b. Making play dates with other toddlers in the unit

c. Give the toddler art supplies

d. Turn the television on to cartoons

ANS: A Provide opportunities for play

Providing play gives the toddler some time to work on growth and development skills and normalizes hospitalization at least for that time. Toddlers typically don't play together in groups. Art supplies may or may not be too advanced for the toddler, but in any case, this would be a form of play. Watching cartoons on television is passive and will not promote autonomy.

The nurse case manager is planning a care conference about a young child who has complex health care needs and will soon be discharged home. Who should the nurse invite to the conference?

a. Family and nursing staff

b. Social worker, nursing staff, and primary care physician

c. Family and key health professionals involved in the child's care

d. Primary care physician and key health professionals involved in the child's care

ANS: C Family and key health professionals involved in the child's care

A multidisciplinary conference is necessary for coordination of care for children with complex health needs. The family is involved as well as key health professionals who are involved in the child's care. The nursing staff can address the nursing care needs of the child with the family, but other involved disciplines must be included. The family must be included in the discharge conferences, which allow them to determine what education they will require and the resources needed at home. A member of the nursing staff must be included to review the nursing needs of the child.

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 which response?

a. Denial

b. Anger

c. Social reintegration

d. Acceptance of child's limitations

ANS: B Anger

After the initial shock has worn off, families often respond to a chronic illness diagnosis with anger. Social reintegration and acceptance may or may not ever occur but if they do it is the culmination of the grief process.

The nurse comes into the room of a child who was just diagnosed with a chronic disability. The child's parents begin to yell at the nurse about a variety of concerns. The nurse's best response is

a. "What is really wrong?"

b. "Being angry is only natural."

c. "Yelling at me will not change things."

d. "I will come back when you settle down."

ANS: B "Being angry is only natural."

Parental anger after the diagnosis of a child with a chronic disability is a common response. One of the most common targets for parental anger is members of the staff. The nurse should recognize the common response of anger to the diagnosis and allow the family to ventilate. The other responses do not validate the parents' feelings and concerns and may hamper a therapeutic nurse-family relationship.

The feeling of guilt that the child "caused" the disability or illness is especially critical in which child?

a. Toddler

b. Preschooler

c. School-age child

d. Adolescent

ANS: B Preschooler

Preschoolers are most likely to be affected by feelings of guilt that they caused the illness/disability or are being punished for wrongdoings.

The nurse is providing support to a family who is experiencing anticipatory grief related to their child's imminent death. An appropriate nursing intervention is to

a. be available to family.

b. attempt to "lighten the mood."

c. not allow visitors at this time.

d. discourage crying because the child can hear it.

ANS: A be available to family.

The most valuable nursing intervention at this time is to be available to the family. Attempting to lighten the mood or to cheer people up is inappropriate. The family's wishes determine who can visit. The nurse should never discourage the expression of emotions.

At the time of a child's death, the nurse tells his mother, "We will miss him so much." The best interpretation of this is that the nurse is

a. pretending to be experiencing grief.

b. expressing personal feelings of loss.

c. denying the mother's sense of loss.

d. talking when listening would be better.

ANS: B expressing personal feelings of loss.

The death of a patient is one of the most stressful experiences for a nurse. Nurses experience reactions similar to those of family members because of their involvement with the child and family during the illness. Nurses often have feelings of personal loss when a patient dies. The nurse is not pretending, denying the mother's sense of loss, or talking when listening would be better

The nurse is caring for a child who has just died. The parents ask to be left alone so that they can rock their child one more time. What response by the nurse is best?

a. Grant their request.

b. Assess why they feel this is necessary.

c. Discourage this because it will only prolong their grief.

d. Kindly explain that they need to say good-bye to their child now and leave.

ANS: A Grant their request.

The parents should be allowed to remain with their child after the death for as long as they need to. No other response is needed.

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. What should the nurse explain to the parents?

a. This will help the child cope effectively by denial.

b. This attitude is helpful to give parents time to cope.

c. Terminally ill children know when they are seriously ill.

d. Terminally ill children usually choose not to discuss their illness.

ANS: C Terminally ill children know when they are seriously ill.

The child needs honest and accurate information about the illnesses, treatments, and prognosis. Children, even at a young age, realize that something is seriously wrong and that it involves them. The nurse should help parents understand the importance of honesty. The child will know that something is wrong because of the increased attention of health professionals. The focus should be on the child's needs, not the parents'. Children will usually tell others how much information they want about their condition.

What intervention will best help the siblings of a child with special needs?

a. Explaining to the siblings that embarrassment is unhealthy

b. Encouraging the parents not to expect siblings to help them care for the child with special needs

c. Providing information to the siblings about the child's condition only as they request it

d. Suggesting to the parents ways of maintaining the siblings' usual routine and participation in activities

ANS: D Suggesting to the parents ways of maintaining the siblings' usual routine and participation in activities

Parents should strive for integrating all family members' needs into daily activities. The nurse can help the parents problem solve and come up with ways to maintain as normal a daily routine for the siblings as possible while still meeting the needs of the child with special needs. Siblings may or may not be embarrassed by the special needs of the family member, but this statement belittles their feelings. Parents can ask the siblings if they want to help provide care and offer information but should not force the child into anything.

The parents of a child born with disabilities ask the nurse for advice about discipline. The nurse's response should be based on knowledge that discipline is

a. essential for the child.

b. too difficult to implement with special-needs child.

c. not needed unless the child becomes problematic.

d. best achieved with punishment for misbehavior.

ANS: A essential for the child.

Discipline is essential for the child. It provides boundaries on which to test out their behavior and teaches them socially acceptable behaviors. All children in the family should be held to the same standards of behavior to prevent resentment. The nurse should teach the parents ways to manage the child's behavior before it becomes problematic. Punishment is not effective in managing behavior.

At what 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 9 to 11 years

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 little to have an adult concept of death. Adolescents have a mature understanding of death.

At what 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 Adolescence

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 will fear separation from parents. School-age children will fear the unknown, such as the consequences of the illness and the threat to their sense of security.

Kelly, age 8 years, will soon be able to return to school after an injury that resulted in several severe, chronic disabilities. What action by the school nurse is most appropriate?

a. Recommend that Kelly's parents attend school at first to prevent teasing.

b. Prepare Kelly's classmates and teachers for changes they can expect.

c. Refer Kelly to a school where the children have chronic disabilities similar to hers.

d. Discuss the fact that her classmates will not accept her as they did before.

ANS: B Prepare Kelly's classmates and teachers for changes they can expect.

Attendance at school is an important part of normalization for Kelly. The school nurse should prepare teachers and classmates about her condition, abilities, and special needs. A visit by the parents can be helpful, but unless the classmates are prepared for the changes, it alone will not prevent teasing. Kelly's school experience should be normalized as much as possible. Children need the opportunity to interact with healthy peers, as well as to engage in activities with groups or clubs composed of similarly affected persons. Children with special needs are encouraged to maintain and reestablish relationships with peers and to participate according to their capabilities.

A parent of a child with a chronic illness is complaining about "all these care planning meetings." What response by the home health care nurse is best?

a. "Our plan will change with your child's growth and development."

b. "We have legal regulations and company policies to follow."

c. "Do you want to change the frequency of our meetings?"

d. "If you don't want to come to the meetings you don't have to."

ANS: A "Our plan will change with your child's growth and development."

As the child goes through the different phases of growth and development, goals and interventions will change to meet the changing needs of the child. This may require frequent care planning meetings and plan updates. The nurse may be also following regulations, but that response does not give the parent useful information. The plan should be based on the child's needs. Asking if the parent wants to change the frequency of meetings is a yes/no question and does not explain the rationale. Of course the parent can opt out of meetings, but the plan will be substandard, and again this does not give the parent useful information.

The home health care nurse is working with a family with three children, one of whom has a chronic condition. What statement by a parent indicates that goals for a primary nursing diagnosis have been met?

a. "We take turns going to soccer practice with our other two kids."

b. "Each sibling has one night when he or she is in charge so we can go out."

c. "We are looking into local support groups for parents."

d. "We can't afford home health care, so one of us will quit our job."

ANS: A "We take turns going to soccer practice with our other two kids."

The family that is demonstrating good ability to balance the needs of all family members is meeting an important goal for the diagnosis Interrupted Family Processes. The other siblings may not want to be "in charge" for an entire evening, but that does not show good balance. Looking into support groups and having to quit a job also do not demonstrate that a goal for this diagnosis is being met.

Which should a nurse identify as common chronic illnesses of childhood? (Select all that apply.)

a. Reactive airway disease (asthma)

b. Respiratory syncytial virus (RSV)

c. Cerebral palsy

d. Diabetes mellitus

e. Human immunodeficiency virus infection (HIV)

ANS: A, C, D, E

A chronic illness is defined as a condition that is long term, does not spontaneously resolve, is usually without a complete cure, and affects activities of daily living. Reactive airway disease (asthma), cerebral palsy, diabetes mellitus, and HIV are all chronic illnesses that may occur during childhood. RSV is a virus that is highly contagious and causes bronchiolitis and pneumonia in children. It does not cause chronic illness.

What should the nurse identify as major fears in the preschool child who is hospitalized with a chronic illness? (Select all that apply.)

a. Altered body image

b. Separation from peer group

c. Bodily injury

d. Mutilation

e. Being left alone

ANS: C, D, E Bodily injury, Mutilation, Being left alone

Body injury, mutilation, and being left alone are major fears of the preschooler. Altered body image and separation from peer group are fears of the adolescent.

Which indicators of imminent death in a child should the nurse expect to assess? (Select all that apply.)

a. Heart rate increases.

b. Blood pressure increases.

c. Respirations become rapid and shallow.

d. The extremities become warm.

e. Peripheral pulses become stronger.

ANS: A, C Heart rate increases, Respirations become rapid and shallow.

Indicators of imminent death include heart rate increasing, with a concomitant decrease in the strength and quality of peripheral pulses; respiratory effort decline, as evidenced by rapid, shallow respirations; and cool and cyanotic extremities. Increased BP, warm extremities, and strong peripheral pulses are not indicators of imminent death.

The student nurse learns the stages of grief according to Kübler-Ross. What stages does this include? (Select all that apply.)

a. Shock

b. Denial

c. Anger

d. Bargaining

e. Acceptance

ANS: B, C, D, E

The stages of grief outlined by Kübler-Ross include denial, anger, bargaining, sadness or depression, and acceptance. Shock occurs during the denial stage.