Chapter 40: Chronic Illness, Complex Conditions, and End-of-Life Care

Question 1

1. The nurse case manager is planning a care conference for 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. The 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

Answer 1

ANS: C
A multidisciplinary conference is necessary to coordinate care for a child with complex health needs. The family and key health professionals who are involved in the child’s care should thus be included. The nursing staff can address the nursing care needs of the child with the family, but other involved disciplines must be included to cover all aspects of care. The family must be included to gain the education they will require and prepare the resources needed at home.

Question 2

2. A 5-year-old with cerebral palsy will be starting kindergarten next month, 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 condition was so severe. What is the best way for the nurse to interpret this situation?
   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.

Answer 2

ANS: B
Parenting a child with a chronic illness or complex condition 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. They are also not exhibiting signs of a knowledge deficit; this is their first interaction with the school system with this child.

Question 3

3. Approach behaviours 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 complex condition. Which is considered an approach behaviour?
   a. The parent is unable to adjust to the progression of the disease or condition.
   b. The parent anticipates future problems and seeks guidance and answers.
   c. The parent looks for new cures without thinking of the possible benefit.
   d. The parent fails to recognize the seriousness of child’s condition despite physical
   evidence.

Answer 3

ANS: B
Parents who anticipate future problems and seek guidance and answers are demonstrating approach behaviours. They are demonstrating positive actions in caring for their child. Avoidance behaviours include being unable to adjust to the progression of the disease or condition, looking for new cures without a thinking of the possible benefit, and failing to recognize the seriousness of the child’s condition despite physical evidence. These behaviours would suggest that the parents are moving away from adjustment, or showing maladaptation to the crisis of a child with chronic illness or complex condition.

Question 4

4. Families progress through various stages of reactions when a child is diagnosed with a chronic illness or complex condition. Which characterizes the period of adjustment that usually follows the shock phase?
   a. Denial
   b. Bitterness and anger
   c. Social reintegration
   d. Acceptance of child’s limitations

Answer 4

ANS: B
For most families, the adjustment phase is accompanied by several responses that are considered normal. A large portion of this phase is one of grief for a loss. The initial diagnosis of a chronic illness or complex condition 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.

Question 5

5. A common parental reaction to a child with special needs is overprotection. Which is suggestive of this type of behaviour? a. Providing inconsistent discipline
   b. Providing consistent, strict discipline
   c. Forcing the child to help him- or herself, even when not capable
   d. Encouraging social and educational activities not appropriate to the child’s level of capability

Answer 5

ANS: A
Overprotection manifests in the parents’ fear of letting the child achieve any new skill, avoiding all discipline, and catering to the child’s every desire in order to prevent frustration. Overprotective parents usually do not set limits or institute discipline, and they 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.

Question 6

6. Most parents of children with special needs tend to experience chronic sorrow. What is one characteristic of chronic sorrow?
   a. Lack of acceptance of the child’s limitation
   b. Lack of available support to prevent sorrow
   c. Periods of intensified sorrow while experiencing anger and guilt
   d. Periods of intensified sorrow and loss that occur in waves over time

Answer 6

ANS: D
Chronic sorrow is manifested by feelings of sorrow and loss that recur in waves over time. The sorrow comes in response to the recognition of the child’s limitations. The family should be assessed on a regular basis in order to provide appropriate support as their needs change. The sorrow is not preventable and occurs during the reintegration and acknowledgement stage.

Question 7

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

Answer 7

ANS: B
Encouraging the toddler to be independent whenever possible fosters a sense of autonomy. The child can be given choices about feeding, dressing, and choice of diversional activities, which will provide a sense of control. These interventions should be practised as part of family-centred care, but they do not particularly foster autonomy. Exposing the child to pleasurable experiences, especially sensory ones, is a supportive intervention that does not particularly support autonomy.

Question 8

8. The feeling of guilt that the child “caused” the disability or illness is especially important in children from which age group?
   a. Toddlers
   b. Preschoolers
   c. School-age children
   d. Adolescents

Answer 8

ANS: 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, while illness or disability will often require 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.

Question 9

9. A father explains to the nurse that his 9-year-old, who has several physical limitations, concentrates on what he can do rather than what he cannot do, and is as independent as possible. What is the best way for the nurse to interpret of this information?
   a. The father is experiencing denial.
   b. The father is expressing his own views.
   c. The child is using an adaptive coping style.
   d. The child is using a maladaptive coping style.

Answer 9

ANS: 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 condition that allows them to accept their limitations, assume responsibility for care, and assist in treatment and rehabilitation. The parent is not denying his child’s limitations. His statement is descriptive of an adaptive coping style, not a maladaptive one.

Question 10

10. 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, “Who do you talk to when something is worrying you?” What is the nurse’s intention when asking this question?
    a. Inappropriate, because the parent is so upset
    b. A diversion from the present crisis to similar situations the parent has dealt with
    c. An intervention to find someone to help the parent
    d. Part of assessing the parent’s available support system

Answer 10

ANS: D
This is very important information for the nurse to obtain and constitutes an appropriate part of an accurate assessment. This question will provide information about the marital relationship (does the parent speak to the spouse?), alternate support systems, and the parent’s ability to communicate. By assessing these areas, the nurse can facilitate the parent’s 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.

Question 11

11. The nurse is providing support to parents when their child has just been diagnosed with chronic complex conditions. What should the nurse do when the parents keep asking the same questions over and over?
    a. Patiently continue to answer their 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.

Answer 11

ANS: 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, so they should be provided with oral and written information. The nurse needs to work with the family to ensure they understand the information provided at the time of diagnosis. Other questions will arise as they adjust to the information.

Question 12

12. The parents of a child born with disabilities ask the nurse for advice about discipline. What information about discipline should the nurse’s response be based on?
    a. It is essential for the child.
    b. It is too difficult to implement with a special needs child.
    c. It is not needed unless the child becomes problematic.
    d. It is best achieved with punishment for misbehaviour.

Answer 12

ANS: A
Discipline is essential for the child. It provides boundaries and teaches the child socially acceptable behaviours. The nurse should teach the parents ways to manage the child’s behaviour before it becomes problematic. Punishment is not effective in managing behaviour.

Question 13

13. Kelly, an 8-year-old, will soon be able to return to school after an injury that resulted in several severe, chronic disabilities. What is the most appropriate action for the school nurse to take?
    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 children have chronic disabilities similar to hers.
    d. Discuss with Kelly and her parents the fact that her classmates will not accept her
    as they did before

Answer 13

ANS: B
Attendance at school is an important part of normalization for Kelly. The school nurse should prepare teachers and classmates with information about her condition, abilities, and special needs. A visit by the parents can be helpful, but unless the classmates are prepared for the changes, that alone will not prevent teasing. 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 re-establish relationships with peers and participate according to their capabilities.

Question 14

14. 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 about this behaviour to his parents?
    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.

Answer 14

ANS: C
Risk-taking, rebelliousness, and lack of cooperation are normal parts of adolescence, during which the young adult is establishing independence. If the parents increase the amount of discipline, the boy will most likely become more rebellious. Socialization with peers should be encouraged.

Question 15

15. A preschooler is found digging up a pet bird that was recently buried after it died. What is the best explanation for this behaviour?
    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 counselling is needed.
    d. Reassurance is needed that the pet has not gone somewhere else.

Answer 15

ANS: D
The preschooler can recognize that the pet has died but has difficulties with the permanence of death. 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 not expected responses. If they persist, intervention may be required.

Question 16

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

Answer 16

ANS: C
By age 9 or 10 years of age, 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.

Question 17

17. Which sentence is most descriptive of a school-age child’s reaction to death?
    a. The child is very interested in funerals and burials.
    b. The child has little understanding of words such as forever.
    c. The child imagines the deceased person to be still alive.
    d. The child has an idealistic view of world and criticizes funerals as barbaric.

Answer 17

ANS: A
The school-age child is very interested in post-death services and may be inquisitive about what happens to the body. School-age children have an established concept of forever and a deeper, concrete understanding of death. Adolescents may be idealistic in their views and criticize funerals.

Question 18

18. 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

Answer 18

ANS: D
Because of their mature understanding of death, remnants of guilt and shame, and issues with deviations from what is 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 their parents. School-age children will fear the unknown, such as the consequences of the illness and the threat to their sense of security.

Question 19

19. 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 denial will help the child cope effectively.
    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.

Answer 19

ANS: 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.

Question 20

20. 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 should the nurse do?
    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.

Answer 20

ANS: A
The parents should be allowed to remain with their child after 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.

Question 21

21. 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. What should the nurse recognize about this situation?
    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.

Answer 21

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

Question 22

22. At the time of a child’s death, the nurse tells his mother, “We will miss him so much.” What is the best way to interpret this statement?
    a. The nurse is pretending to be experiencing grief.
    b. The nurse is expressing personal feelings of loss.
    c. The nurse is denying the mother’s sense of loss.
    d. The nurse is talking when listening would be better.

Answer 22

ANS: B
The death of a patient is one of the most stressful aspects of being 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.

Question 23

23. Which is an appropriate nursing intervention 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. Explain to the child the need for the constant measurement of vital signs.
    d. Whisper to the child instead of using a normal voice.

Answer 23

ANS: 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.

Question 24

24. The nurse is providing support to a family who is experiencing anticipatory grief related to their child’s imminent death. Which is an appropriate nursing intervention?
    a. Be available to the family.
    b. Attempt to “lighten the mood.”
    c. Suggest activities to cheer up the family.
    d. Discourage crying until the actual time of death.

Answer 24

ANS: A
The most appropriate intervention to provide support to a family whose child is dying is to be available to the family. Attempting to “lighten the mood” is not supporting the family who is experiencing anticipatory grief. Suggesting activities to cheer up the family is not acknowledging their grief. Discouraging crying is not a therapeutic response.

Question 25

1. When assessing the family with a child that has a severe complex condition, which will the nurse document as characteristic of parental overprotection? Select all that apply. Express answer in small letters followed by a comma and a space—e.g., a, b, c.
   a. Inconsistent discipline
   b. Sets appropriate age-related goals
   c. Restricts play activities
   d. Encourages wide network of friends and playmates
   e. Exaggerated praise for child’s every activity
   f. Monopolizes child’s time

Answer 25

ANS: A, C, E, F