Chapter 36: Impact of Chronic Illness, Disability, or End of Life Care

The nurse is providing support to parents at the time their child is diagnosed with chronic disabilities. The nurse notices that the parents keep asking the same questions. The nurse should: a. Patiently continue to answer questions. b. Kindly refer them to someone else to answer their questions. c. Recognize that some parents cannot understand explanations. d. Suggest that they ask their questions when they are not upset.

A Diagnosis is one of the anticipated stress points for parents. The parents may not hear or remember all that is said to them. The nurse should continue to provide the kind of information that they desire. This is a particularly stressful time for the parents; the nurse can play a key role in providing necessary information. Parents should be provided with oral and written information. The nurse needs to work with the family to ensure understanding of the information. The parents require information at the time of diagnosis. Other questions will arise as they adjust to the information.

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 a special-needs child. c. Not needed unless the child becomes problematic. d. Best achieved with punishment for misbehavior.

A Discipline is essential for the children with disabilities. It provides boundaries within which to test their behavior and teaches them socially acceptable behaviors. It is not too difficult to implement discipline with a special-needs child. The nurse should teach the parents ways to manage the child's behavior before it becomes problematic. Punishment is not effective in managing behavior.

A common parental reaction to a child with special needs is parental overprotection. Parental behavior suggestive of this includes: a. Giving inconsistent discipline. b. Providing consistent, strict discipline. c. Forcing child to help self, even when not capable. d. Encouraging social and educational activities not appropriate to child's level of capability.

A Parental overprotection is manifested by the parents' fear of letting the child achieve any new skill, avoiding all discipline, and catering to the child's every desire to prevent frustration. The overprotective parents usually do not set limits and or institute discipline, and they usually prefer to remain in the role of total caregiver. They do not allow the child to perform self-care or encourage the child to try new activities.

The nurse is talking with the parents of a child who died 6 months ago. They sometimes still "hear" the child's voice and have trouble sleeping. They describe feeling "empty" and depressed. The nurse should recognize that: a. These are normal grief responses. b. The pain of the loss is usually less by this time. c. These grief responses are more typical of the early stages of grief. d. This grieving is essential until the pain is gone and the child is gradually forgotten.

A These are normal grief responses. The process of grief work is lengthy and resolution of grief may take years, with intensification during the early years. The child will never be forgotten by the parents.

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

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

A cure is no longer possible for a young child with cancer. The nursing staff recognizes that the goal of treatment must shift from cure to palliation. Which is an important consideration at this time? a. The family is included in the decision to shift the goals of treatment. b. The decision must be made by the health professionals involved in the child's care. c. The family needs to understand that palliative care takes place in the home. d. The decision should not be communicated to the family because it will encourage a sense of hopelessness.

A When the child reaches the terminal stage, the nurse and physician should explore the family's wishes. The family should help decide what interventions will occur as they plan for their child's death.

Which represents a common best practice in the provision of services to children with chronic or complex conditions? a. Care is focused on the child's chronologic age. b. Children with complex conditions are integrated into regular classrooms. c. Disabled children are less likely to be cared for by their families. d. Children with complex conditions are placed in residential treatment facilities.

B Normalization refers to behaviors and interventions for people with disabilities to integrate into society by living life as people without a disability would. For children, normalization includes attending school and being integrated into regular classrooms. This affords the child the advantages of learning with a wide group of peers. Care is necessarily focused on the child's developmental age. Home care by the family is considered best practice. The nurse can assist families by assessing social support systems, coping strategies, family cohesiveness, and family and community resources.

Which best describes how preschoolers react to the death of a loved one? a. The preschooler is too young to have a concept of death. b. A preschooler is likely to feel guilty and responsible for the death. c. Grief is acute but does not last long at this age. d. Grief is usually expressed in the same way in which the adults in the preschooler's life are expressing grief.

B Because of egocentricity, the preschooler may feel guilty and responsible for the death. Preschoolers usually have some understanding of the meaning of death. Death is seen as a departure or some kind of sleep and they have no understanding of the permanence of death.

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: a. Denial. c. Social reintegration. b. Guilt and anger. d. Acceptance of child's limitations.

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

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

C, D, E Bodily injury, mutilation, and being left alone are all major fears of the preschooler. Altered body image and separation from peers are major fears in the adolescent.

Most parents of children with special needs tend to experience chronic sorrow. This is characterized by: a. Lack of acceptance of the 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 and loss that occur in waves over time.

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

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 speak 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."

D Hearing is the last sense to cease before death. Talking to the dying child is important both for the child and for the family. There is no evidence that the dying process decreases hearing acuity; therefore, the sister should speak at a normal volume. The sibling should be encouraged to speak to the child, as well as sit close to the bed and hold the child's hand.

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

D 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. A morbid preoccupation with death and the child looking to see if a ghost took it away are expected responses. If they persist, intervention may be required.

A nurse is planning palliative care for a child with severe pain. Which should the nurse expect to be prescribed for pain relief? a. Opioids as needed c. Distraction and relaxation techniques b. Opioids on a regular schedule d. Nonsteroidal antiinflammatory drugs

B Pain medications for children in palliative care should be given on a regular schedule, and extra doses for breakthrough pain should be available to maintain comfort. Opioid drugs such as morphine should be given for severe pain, and the dose should be increased as necessary to maintain optimal pain relief. Techniques such as distraction, relaxation techniques, and guided imagery should be combined with drug therapy to provide the child and family strategies to control pain. Nonsteroidal antiinflammatory drugs are not sufficient to manage severe pain for children in palliative care.

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."

B 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. "What is really wrong?" "Yelling at me will not change things," and "I will come back when you settle down" are all possible responses, but they are not the likely reasons for this anger.

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. The nurse should: a. Grant their request. b. Assess why they feel that 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.

A The parents should be allowed to remain with their child after the death. The nurse can remove all of the tubes and equipment and offer the parents the option of preparing the body. This is an important part of the grieving process and should be allowed if the parents desire it. It is important for the nurse to ascertain if the family has any special needs.

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 c. Anticipatory Grieving related to impending death d. Anxiety related to frequent hospitalizations

A This is the priority nursing diagnosis that is appropriate for the majority of chronic illnesses. Pain is not associated with the majority of chronic illnesses. A chronic illness is one that does not have a cure. It does not mean the child will die prematurely. Frequent hospitalizations are not necessarily required for many chronic illnesses.

Chris, age 9 years, has several physical disabilities. His father explains to the nurse that his son concentrates on what he can rather than cannot do and is as independent as possible. The nurse's best interpretation of this is: a. The father is experiencing denial. b. The father is expressing his own views. c. Chris is using an adaptive coping style. d. Chris is using a maladaptive coping style.

C The father is describing a well-adapted child who has learned to accept physical limitations. These children function well at home, at school, and with peers. They have an understanding of their disorder that allows them to accept their limitations, assume responsibility for care, and assist in treatment and rehabilitation. The father is not denying the child's limitations or expressing his own views. This is descriptive of an adaptive coping style.

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

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

Lindsey, age 5 years, 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 that her disability was so severe. The best interpretation of this situation is that: a. This is a sign that 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 are used to having expectations that are too high.

B Parenting a child with a chronic illness can be very stressful for parents. There are anticipated times that 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; they are responding to the child's placement in school. The parents are not exhibiting signs of a knowledge deficit or expectations that are too high; this is their first interaction with the school system with this child.

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.

B The death of a patient is one of the most stressful aspects of a critical care or oncology 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 experiencing a normal grief response to the death of a patient. There is no implication that the mother's loss is minimized. The nurse is validating the worth of the child.

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

C A multidisciplinary conference is necessary for coordination of care for children with complex health needs. The family and key health professionals who are involved in the child's care are included. 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.

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

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.

Nursing interventions to help the siblings of a child with a complex or chronic condition cope include: 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 showing gratitude to the siblings who help care for the child with a disability or chronic condition.

D The presence of a child with special needs in a family will change the family dynamic. Siblings may be asked to take on additional responsibilities to help the parents to care for the child. The parents should show gratitude, such as an increase in allowance, special privileges, and verbal praise. 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. The siblings need to be informed about the child's condition before a non-family member does so. The parents do not want the siblings to fantasize about what is wrong with the child.

Which term best describes a multidisciplinary approach to the management of a terminal illness that focuses on symptom control and support? a. Dying care c. Restorative care b. Curative care d. Palliative care

D This is one of the definitions of palliative care. The goal of palliative care is the achievement of the highest possible quality of life for patients and their families.

What is most descriptive of a school-age child's reaction to death? a. Is very interested in funerals and burials b. Has little understanding of words such as forever c. Imagines the deceased person to be still alive d. Has an idealistic view of the world and criticizes funerals as barbaric

A The school-age child is very interested in postdeath services and may be inquisitive about what happens to the body. School-age children have an established concept of forever and have a deeper understanding of death in a concrete manner. Toddler may imagine the deceased person to still be alive. Adolescents may respond to death with an idealistic view of the world and criticize funerals as barbaric.

Which is the most appropriate nursing intervention to promote normalization in a school-age child with a chronic illness? a. Give child as much control as possible. b. Ask child's peer to make child feel normal. c. Convince 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 to expect one individual to make the child feel normal. The child has a chronic illness. 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.

Which are appropriate statements the nurse should make to parents after the death of their child (select all that apply)? a. "We feel so sorry that we couldn't save your child." b. "Your child isn't suffering anymore." c. "I know how you feel." d. "You're feeling all the pain of losing a child." e. "You are still young enough to have another baby."

A, D By saying, "We feel so sorry that we couldn't save your child," the nurse is expressing personal feeling of loss or frustration, which is therapeutic. Stating, "You're feeling all the pain of losing a child," focuses on a feeling, which is therapeutic. The statement, "Your child isn't suffering anymore," is a judgmental statement, which is nontherapeutic. "I know how you feel" and "You're still young

Which describe avoidance behaviors a parent may exhibit when learning that his or her child has a chronic condition (select all that apply)? a. Refuses to agree to treatment b. Shares burden of disorder with others c. Verbalizes possible loss of child d. Withdraws from outside world e. Punishes self because of guilt and shame

A, D, E A parent who refuses to agree to treatment, withdraws from the outside world, and punishes self because of guilt and shame is exhibiting avoidance coping behaviors. A parent who shares the burden of disorder with others and verbalizes possible loss of child is exhibiting approach coping behaviors.

Kelly, age 8 years, will soon be able to return to school after an injury that resulted in several severe, chronic disabilities. What is the most appropriate action by the school nurse? a. Recommending that Kelly's parents attend school at first to prevent teasing b. Preparing Kelly's classmates and teachers for changes they can expect c. Referring Kelly to a school where the children have chronic disabilities similar to hers d. Discussing with Kelly and her parents the fact that her classmates will not accept her as they did before

B 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 and 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 participate according to their capabilities.

Which intervention will encourage a sense of autonomy in a toddler with disabilities? a. Avoiding separation from family during hospitalizations b. Encouraging independence in as many areas as possible c. Exposing child to pleasurable experiences as much as possible d. Helping parents learn special care needs of their child

B Encouraging the toddler to be independent encourages a sense of autonomy. The child can be given choices about feeding, dressing, and diversional activities, which will provide a sense of control. Avoiding separation from family during hospitalizations and helping parents learn special care needs of their child should be practiced as part of family-centered care. They do not particularly foster autonomy. Exposing the child to pleasurable experiences, especially sensory ones, is a supportive intervention. It does not particularly support autonomy.

Which intervention will encourage a sense of autonomy in a toddler with disabilities? a. Avoid separation from family during hospitalizations. b. Encourage independence in as many areas as possible. c. Expose child to pleasurable experiences as much as possible. d. Help parents learn special care needs of their child.

B Encouraging the toddler to be independent encourages a sense of autonomy. The child can be given choices about feeding, dressing, and diversional activities, which will provide a sense of control. Avoiding separation from family during hospitalizations, and helping parents learn special care needs of their child should be practiced as part of family-centered care. It does not necessarily foster autonomy. Exposing the child to pleasurable experiences, especially sensory ones, is a supportive intervention. It does not promote autonomy.

Approach behaviors are coping mechanisms that result in a family's movement toward adjustment and resolution of the crisis of having a child with a chronic illness or disability. What is considered an approach behavior in parents? a. Are unable to adjust to a progression of the disease or condition b. Anticipate future problems and seek guidance and answers c. Look for new cures without a perspective toward possible benefit d. Fail to recognize seriousness of child's condition despite physical evidence

B The parents who anticipate future problems and seek guidance and answers are demonstrating approach behaviors. They are demonstrating positive actions in caring for their child. Avoidance behaviors include being unable to adjust to a progression of the disease or condition, looking for new cures without a perspective toward possible benefit, and failing to recognize the seriousness of the child's condition despite physical evidence. These behaviors would suggest that the parents are moving away from adjustment or adaptation in the crisis of a child with chronic illness or disability.

The nurse and a new nurse are caring for a child who will require palliative care. Which statement made by the new nurse would indicate a correct understanding of palliative care? a. "Palliative care serves to hasten death and make the process easier for the family." b. "Palliative care provides pain and symptom management for the child." c. "The goal of palliative care is to place the child in a hospice setting at the end of life." d. "The goal of palliative care is to act as the liaison between the family, child, and other health care professionals."

B The primary goal of palliative care is to provide pain and symptom management, not to hasten death or place the child in a hospice setting. Palliative care is provided by a multidisciplinary team whose goal it is to provide active total care for patients whose disease is no longer responding to curative treatment.

A nurse is caring for a child who is near death. Which physical signs indicate the child is approaching death (select all that apply)? a. Body feels warm b. Tactile sensation decreasing c. Speech becomes rapid d. Change in respiratory pattern e. Difficulty swallowing

B, D, E Physical signs of approaching death include tactile sensation beginning to decrease, a change in respiratory pattern, and difficulty swallowing. Even though there is a sensation of heat, the body feels cool, not warm, and speech becomes slurred, not rapid.

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

C Risk taking, rebelliousness, and lack of cooperation are normal parts of adolescence. If the parents increase the amount of discipline, he will most likely be more rebellious. Socialization with peers should be encouraged as a part of adolescence. It is a normal part of adolescence during which the young adult is establishing independence.

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 explain that: 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 the seriousness of their illness.

C The child needs honest and accurate information about the illness, 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. This would interfere with denial as a form of coping. 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.

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

D Because of their mature understanding of death, remnants of guilt and shame, and issues with deviations from normal, adolescents have the most difficulty coping with death. Toddlers and preschoolers are too young to have difficulty coping with their own death. They 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.

The nurse is talking with the parent of a child newly diagnosed with a chronic illness. The parent is upset and tearful. The nurse asks, "With whom do you talk when something is worrying you?" This should be interpreted as: a. Inappropriate, because parent is so upset. b. A diversion of the present crisis to similar situations with which parent has dealt. c. An intervention to find someone to help parent. d. Part of assessing parent's available support system.

D This question will provide information about the marital relationship (does the parent speak to the spouse?), alternate support systems, and ability to communicate. These are very important data for the nurse to obtain and an appropriate part of an accurate assessment. By assessing these areas, the nurse can facilitate the identification and use of community resources as needed. The nurse is obtaining information to help support the parent through the diagnosis. The parent is not in need of additional parenting help at this time.