Chapter 19 : Family-centered care of the child with chronic illness or disability

Question 1

1. 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

Answer 1

ANS: B-Chronic illness

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.

Question 2

2. 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 childs care.
   c. Parents are the experts in caring for their child.
   d. Decisions are made for the family to reduce stress.

Answer 2

ANS: C-Parents are the experts in caring for their child.

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

Question 3

3. What should the nurse determine to be the priority intervention for a family with an infant who has a
   disability?

a. Focus on the childs 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.

Answer 3

ANS: D-Foster feelings of competency by helping parents learn the special care needs of the infant.

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.

Question 4

4. The potential effects of chronic illness or disability on a childs 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

Answer 4

ANS: A-Hindered mobility

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.

Question 5

5. 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

Answer 5

ANS: B-Preschooler

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.

Question 6

6. 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.

Answer 6

ANS: C-Encourage socialization with peers.

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.

Question 7

7. 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

Answer 7

ANS: B-That this is a normal part of adolescence

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.

Question 8

8. 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 childs 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.

Answer 8

ANS: A-Give the child as much control as possible.

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.

Question 9

9. 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

Answer 9

ANS: C-Belief that procedures are a deserved punishment

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.

Question 10

10. 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 childs behavior becomes problematic
c. Best achieved with punishment for misbehavior
d. Too difficult to implement with a special needs child

Answer 10

ANS: A-Essential for the child

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 childs behavior
before it becomes problematic. Punishment is not effective in managing behavior.

Question 11

11. 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 childs condition only as requested.

d. Invite the siblings to attend meetings to develop plans for the child with special needs.

Answer 11

ANS: D-Invite the siblings to attend meetings to develop plans for the child with special needs.

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 childs
condition before a nonfamily member does so. The parents do not want the siblings to fantasize about what is
wrong with the child.

Question 12

12. 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 childs condition despite physical evidence

Answer 12

ANS: B-Anticipating future problems and seeking guidance and answers

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 childs 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.

Question 13

13. 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.

Answer 13

ANS: D-Discuss the meaning of the parents religious and cultural background.

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.

Question 14

14. 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 childs limitations

Answer 14

ANS: B-Guilt and anger

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 childs limitations are the
culmination of the adjustment process.

Question 15

15. What manifestation observed by the nurse is suggestive of parental overprotection?
    a. Gives inconsistent discipline
    b. Facilitates the childs 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 childs level of capability

Answer 15

ANS: A-Gives inconsistent discipline

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.

Question 16

16. What finding by the nurse is most characteristic of chronic sorrow?
    a. Lack of acceptance of childs 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 childs development

Answer 16

ANS: D-Periods of intensified sorrow at certain landmarks of the childs development

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 childs 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.

Question 17

17. 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.

Answer 17

ANS: B-This is a normal anticipated time of parental stress.

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 childs 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.

Question 18

18. 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.

Answer 18

ANS: A-Parent-to-parent support is valuable.

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.

Question 19

19. 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.

Answer 19

ANS: A-You should help the siblings see the similarities and differences between themselves and your child
with special needs.

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.

Question 20

20. 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

Answer 20

ANS: B-Asthma

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.

Question 21

21. 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

Answer 21

ANS: A- Desire to have the child home is essential to effective home care.

Home care requires the family to manage the childs illness, including providing daily hands-on care, monitoring the childs medical condition, and educating others to care for the child. The childs home
environment with the childs 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.

Question 22

22. 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

Answer 22

ANS: D-Important because it can be beneficial to the transition from hospital to home

This type of groundwork is essential for the family. Adequate family training and preparation will assist in the
childs transition home. The nursing staff in the hospital is responsible for the childs 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.

Question 23

23. 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

Answer 23

ANS: A- Nurse

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.

Question 24

24. 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

Answer 24

ANS: C-Adolescent and family

The extent to which children are involved in their own care and decision making depends on many factors,
including the childs 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.

Question 25

25. The nurse has been assigned as a home health nurse for a child who is technology dependent. The nurse
    recognizes that the familys 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

Answer 25

ANS: B-Respect the differences

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 familys 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.

Question 26

26. A childs parents ask the nurse many questions about their childs 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 dont 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.

Answer 26

ANS: A-Tell them, I dont know, but I will find out

Questions from parents should be answered in a straightforward manner. Stating I dont 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
childs 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.

Question 27

27. 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

Answer 27

ANS: D-Child, family, and all professionals involved

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.

Question 28

28. 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.

Answer 28

ANS: C-Restrict communication to clinically relevant information.

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.

Question 29

29. The nurse has been visiting an adolescent with recently acquired tetraplegia. The teens mother tells the
    nurse, Im 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.

Answer 29

ANS: B-Listen and reflect the mothers feelings

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.

Question 30

30. 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.

Answer 30

ANS: A-Encourage mobility.

A major principle for developmental support in children with complex medical issues is that it should be
flexible and tailored to the individual childs 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.

Question 31

31. 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

Answer 31

ANS: C-A preschooler who refuses to participate in self-care

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

Question 32

32. 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 dont 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.

Answer 32

ANS: C-Explain who will have access to the information.

Communication with the family should not be invasive. The nurse needs to explain the importance of
collecting the information, its applicability to the childs 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

Question 33

33. 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

Answer 33

ANS: A-Appropriate to improve quality of care

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