Chapter 32: The Child with a Chronic Health Problem

The nurse assesses the family of a child with a chronic condition. Which statements by the siblings of a child with a chronic condition demonstrate positive responses? Select all that apply.

"Don't pay attention to those people. They do not matter." "I like to read my brother a story before bedtime." "When is my brother's next health care provider appointment? Both positive and negative behaviors and responses can be found in behaviors of well siblings of children with a chronic condition. Positive responses include caring responses, protecting the sibling from reactions of others, and including the sibling in activities. Negative responses include statements which are mixed with anger, hostility, jealousy or increased competition for attention. Not wanting to help, being mad that the sibling has a chronic illness, and displaying jealousy are all negative responses.

The nurse has been caring for a girl with Down syndrome since she was an infant. She is approaching her 12th birthday and is developing breasts and pubic hair. Which of the following questions must be asked during this visit?

"How are you coping?" While it is common for health care providers to ask families how they are coping in the months following diagnosis, they often forget to do so 1, 5, and 10 years later. The nurse needs to be sure to ask parents and families how they are coping, especially as the child enters different stages of development.

The nurse is conducting a health assessment of a 6-year-old girl with spinal bifida. During the interview, the girl keeps interrupting and shouting to get her mother's attention. The mother instantly responds to every interruption and attempts to placate her with promises of a trip to the ice cream store. Which response by the nurse would be most appropriate to address the mother's response to her daughter's demands?

"How do you feel when your daughter interrupts you?" It is common for parents of children with a chronic condition to spoil their children and allow them to have anything that they wish. The nurse should try to elicit the mother's feelings about the girl's behavior in order to open a dialogue about appropriate discipline. The open-ended question is the best way to gather information and evaluate the mother's feelings. Simply commenting about her behavior is not helpful. Asking a yes or no question is less likely to elicit the necessary information.

The nurse has cared for a family of two girls, ages 15 and 13, for many years. The older sister has short stature with associated incontinence and respiratory complications. The younger sister has recently begun her freshman year at the same high school and has a very active social life. The 15-year-old girl confides that she has no friends and that she fears she will never have a boyfriend. She whispers that she is afraid she will never get to experience sex because of her problems with incontinence. Which response by the nurse would be most effective?

"Let's talk about whether your condition may affect your sexual relationships." The nurse should address the specifics of her case to clear up any misinformation and lack of knowledge. Telling her she is a wonderful girl or assuring her that she will find a partner is not helpful and does not address her concerns. Asking her how long she has been concerned about this issue is not helpful and does not elicit necessary information.

The nurse has been caring for a family with two boys, ages 6 and 9. The 9-year-old boy has Down syndrome. During a routine wellness examination, the 6-year-old child tells the nurse that he is smarter than his big brother because he can read. How should the nurse respond?

"Let's talk about your big brother and his feelings." There can be moments of discomfort when the younger child surpasses the older child in academic skills. This is an ideal time to discuss the limitations of the older child with the younger child and to promote sensitivity in not making fun of or causing embarrassment to the older sibling because of the differences that may exist. Reprimanding the child, or reminding him that his brother can do things that he cannot is not helpful and does not teach.

The nurse is talking to a 12 year old sibling of a child with a chronic condition in the waiting room at the pediatrician's office. The sibling states, "I hate coming here and waiting. It is such a long car ride. I just want to get home." Which nursing response is best?

"That must be hard for you." Stating "That must be hard for you" accepts the sibling's feelings and potentially elicits more information. It is a method of therapeutic communication. Stating that the nurse understands how the sibling feels or saying that's too bad closes communication. It is nice to attempt to raise the child's spirits but it changes the topic of the way the sibling is feeling.

A 15-year-old girl has had type I diabetes since she was 2 years old. She recently began dialysis and is also struggling with exhaustion. She has been hospitalized with an infection and confides to the nurse that she feels hopelessness due to her failing health. Which response by the nurse would be most effective?

"What do you think would help you feel better or improve your situation?" It is important to ask the child how she views her situation and what might improve it. Using open-ended questions elicits the girls' thoughts and fears and helps the nurse assess the issues at hand. It can also help the nurse determine whether the girl's hopelessness characterizes depression. Questions that can be answered with "yes" or "no" are less effective. Assuring her that she'll feel better soon does not address her concerns.

A nurse is working with an older child who has a chronic condition. When assessing the impact of the condition on the child, which question would the nurse most likely ask first?

"What does your condition mean to you?" The first task when working with older children and adolescents with chronic conditions is to find out what the condition means to them. What is their concept of the chronic condition and how do they think it affects their life? From there the nurse would gather additional specific information related to the child, the condition, ability to function and issues.

The nurse is coordinating a camp for children with chronic conditions. The goals of the camp include providing a support group for the children and respite time for the caregivers. Which activity is encouraged for the caregivers?

A caregiver-selected activity or rest Respite care is care of the child with chronic conditions provided by others, affording everyday caregivers a period of rest and refreshment. Having the caregiver select an enjoyable activity or allowing for additional sleep or rest is beneficial to the caregiver. This time should not be focused on the chronic condition or parent-child interactions. While it is helpful to have time to complete home maintenance projects, this time should be focused on something enjoyable for the caregiver.

To help the school-age child achieve his or her self-care goals, what intervention could the nurse use?

A contract School-age children often respond well to contracts. For instance, a special privilege or other incentive is awarded when the child earns a set number of stickers.

When caring for a child with a chronic illness, a high priority goal that the nurse should establish for the patient is which of the following?

Accomplish growth and development milestones. Major goals for the chronically ill child are to accomplish growth and development milestones, perform self-care tasks, decrease anxiety, and experience more social interaction. Goals for the caregiver are to increase social interaction; decrease feelings of grief, anger, and guilt; and increase their adjustment to living with a child with a chronic illness. The nurse would never prevent feelings of grief or anxiety, because these are normal processes. Rather, the nurse would help the patient and family deal with these feelings. Overprotection is not a goal but a result of the grief process.

It is generally well accepted that children who are physically challenged or intellectually disabled do best in which school setting?

An integrated school with children who are not disabled Integrating children who are physically challenged or intellectually disabled with other children in school helps them learn to relate with other children.

The mother of a child just diagnosed with a chronic condition tells the nurse, "I knew something was wrong, but nobody believed me." The nurse interprets the mother's statement as which of the following?

Anger "The mother's statement reflects anger. Grief would be evidenced by statements such as "why did this happen?" or "why our family?" Denial would be evidenced by statements such as "everything will be okay, there's nothing really wrong." Guilt would be evidenced by statements such as "I should have picked on the symptoms" or "I should have asked for a second opinion."

When performing an assessment on a newly diagnosed pediatric patient with a chronic illness, what approach should the nurse take to maximize the effectiveness of the visit?

Carry out the exam in a calming manner to help gain cooperation from the child. To prevent the child from having negative memories of health care experiences and to encourage cooperation with an assessment, a calm demeanor is a technique that can be utilized. Being as quick as possible may not enable the nurse to be calm and effective. Since this is a newly diagnosed patient, the family may not have a good understanding of the child's condition, and the nurse should always include the child in the plan of care, including the assessment.

A 12-year-old with juvenile rheumatoid arthritis has pain and swelling of the hands. During a visit with the occupational therapist, the parent states, "I want her to become involved with volleyball at school. She won't participate in any sports like her sister." What caregiver response is the parent exhibiting?

Denial Caregivers in denial behave as though the condition does not exist, and they encourage the child to overcompensate for any disabilities.

The nurse is planning care for the child with a chronic condition. To establish a realistic goal related to increasing child socialization, which information is most helpful?

Determining what opportunities are available To establish a realistic goal, it is most helpful to determine what opportunities are available for socialization. Goals must be able to be accomplished. Determining if relatives live in the area, family interests with friends, and the level of interest in educational programs can provide activities for consideration and opportunities that are available.

What nursing intervention would best address the nursing diagnosis of self-care deficit related to limitations of illness for a child with a chronic illness?

Develop aids to alleviate difficulty with tasks. If the child has a self-care deficit, the nurse should create ways for the child to be involved in his/her care to that child's maximum potential. Assisting the parents to recognize the child's potential may prevent overprotective behavior that would hinder growth and development. Arranging for peers to visit is more appropriate when addressing social isolation concerns rather than self-care concerns, and explaining tasks ahead of time may decrease anxiety associated with procedures.

The nurse is caring for a 12-year-old girl with a chronic endocrine condition that has resulted in weight gain, facial hair, and acne. During a routine examination, the girl confides that she doesn't participate in any extracurricular activities or have any social life because she is so unattractive. She feels it is pointless to get involved with anything or anyone because she is always going to be "fat and ugly." When responding to the girl, which of the following would be the priority?

Exploring the girl's perception of her body image and health status Obtaining information about how the child perceives herself provides a baseline from which to develop a teaching plan to address the child's inaccurate beliefs and then develop strategies to highlight good feelings. Assisting the girl with methods to enhance physical appearance is helpful after the nurse addresses the child's perceptions. Referral to a counselor might be appropriate after exploring the child's feelings.

A nurse is caring for a 3-year-old child with a chronic disease. Which of the following actions by the nurse will encourage therapeutic communication with the child's caregivers?

Listening to the family express positive and negative feelings during the journey of the illness In family-centered care, the nurse should build a trusting relationship by using positive communication skills. Listening and acknowledging family's feeling regarding caring for a chronic child shows support. The reduction of health costs and provision of resources is helpful, but listening builds trust.

A nurse understands that it is important to help a family adjust to a child's chronic health condition. This is best done by doing which of the following?

Making adjustments in care by doing ongoing interviews It is important to help the family adjust to the chronically ill child's condition. This is done best by doing an initial assessment and ongoing interviews. The nurse should never tell a family how to cope but instead give them suggestions about ways to cope. The nurse should encourage the caregivers to discuss needs of the well siblings as well as the sick child. He or she should never tell a family that it will get better over time; doing so is inappropriate and can give false hope.

Which does the nurse term as a chronic condition?

Muscular dystrophy Muscular dystrophy is a chronic condition that causes progressive degeneration of the muscle, resulting in muscle weakness and muscle loss. Because it is over 6 months and lasts throughout a lifetime, it is considered a chronic condition. A streptococcus infection can occur throughout the lifetime but it is treated and eliminated from the body. Varicella is typically a self-limiting communicable disease. Although there can be lifetime ramifications from a fracture, typically a fracture heals and is not a chronic condition.

The school-aged child with a chronic health condition is interacting with a group of peers in the classroom during recess. Which scenario would the nurse classify as discrimination?

Picking a game that the others can play but the child cannot participate in Discrimination is the practice of unfairly treating a person. Not considering an activity that all students, including the client with a chronic condition, can participate in may be considered as unfair and discriminatory. This can cause social isolation and be hurtful to the child. A more beneficial approach would be for the group of kids to discuss what the child would like to do during recess. Having options of activities and including a role for the client in an activity promotes self-esteem, interaction with peers, and accomplishment.

When the nurse is caring for a child with a chronic condition, which is most important when planning care?

Realistic child goals All parts of planning nursing care are important; however, developing realistic client goals are most important. Without realistic goals, the interventions planned with scientific rationale will not be successful. Priority NANDA diagnoses can be developed with unrealistic goals but the plan of care will not be successful.

A nurse admits a 10-year-old with spina bifida who is confined to a wheelchair. When asking the parent and child questions, the parent appears disinterested and distant, allowing the child to answer all questions. What typical caregiver response is this parent displaying?

Rejection Caregivers showing rejection distance themselves emotionally from the child. Although they provide physical care, they tend to scold and correct the child continuously.

The nurse is caring for a female infant born with a congenital anomaly. Which of the following factors is likely to have the most influence on her mother's ability to cope with the infant's handicap?

The parent's perception of the handicap Perception of a child's challenge and whether support people are available are two important determinants of whether parents can accept a disabled child well.

The specialty clinic nurse is caring for an 8-year-old with a chronic respiratory condition. When collaborating with other professionals that interact with the child, which professional is most important?

The school nurse When collaborating on the care of an elementary school student, it is most important to work with the school nurse. The school nurse has the expertise to facilitate the child's care at school and also to work with the teachers that spend time with the student. Both need to have a clear picture of the abilities and needs of the child. All of the other options may have a role to play in the child's care but are not as important as the role of the school nurse.

The nurse at a specialty clinic has developed a therapeutic relationship with the family of a child with a chronic condition. Which family suggestion would the nurse reinforce as helpful to maintaining the family structure?

Use family to assist with care and spend time together as a couple. There are many struggles and joys when caring for a child with a chronic condition. There can be a toll on a marriage, making it important that the parents spend time together as a couple. Having the parents work separate shifts or having one babysitter is not helpful in maintaining the family structure. Hiring household help is not realistic for most families.

When would be the best time for the nurse to begin planning for home care for the child with a chronic illness?

When the child is admitted to the health care facility. Home care planning begins when the child is admitted to the health care facility and continues until discharge.

A woman has just been told that her 5-year-old has leukemia. She says, "How can this be?" The mother is exhibiting signs of which of the following?

denial When anyone suffers a loss, a grief reaction occurs. This is true when a parent learns of a diagnosis of a chronic illness. Denial is usually the first reaction to the diagnosis and is exemplified when a parent states, "How could this be?" or "Why my child?"

The nurse is caring for a child who was born physically challenged because of an orthopedic condition. The feeling that parents often manifest first when told their child will have this condition permanently is:

denial. Parents whose child is born with a physical challenge may pass through stages of grief the same as if they were told their infant will die.

When caring for the child with a chronic condition, the nurse provides education to the parents:

on an ongoing basis. Teaching parents about their child's chronic condition is not something that is done only once; rather, parent and family teaching should be an ongoing process. This education enhances the parents' ability to manage the child's chronic condition. Doing so is often easier for the parents when they feel knowledgeable about the condition, competent in the skills needed to care for the condition, aware of what symptoms indicate problems and which do not, and supported by the healthcare community should they have a problem.

When planning for the care of the hospitalized child with a long-term illness, the best pattern to use for staffing of nurses would be:

primary or case-management nursing. So that children do not have to keep adjusting to caregivers, the best health care pattern is for caregivers to be consistent.

Which of the following does the nurse recognize as the best predictor that the family of a child with chronic illness will meet their challenges?

strong support systems The effects of a chronic illness on a family depend in part on family coping abilities. Families who have a strong support system usually are better able to meet these challenges. The number of siblings, how educated the parents are, and financial resources do not necessarily help a family cope with a chronic illness of a child.

When describing chronic conditions to a group of students, which of the following would the instructor include as a characteristic?

Condition lasting at least 6 months The definition of a chronic condition is one that lasts at least 6 months and requires long-term monitoring and management "to control the symptoms and to shape the course of the disease" (Corbin, 2001, p.1). It includes physical, cognitive, psychological, and social disorders that can range from mild (such as allergies or learning disabilities) to significant impairments (such as autism or cerebral palsy) (van der Lee et al., 2007). Chronic conditions are usually caused by irreversible pathologic alterations. While some chronic conditions may alternate between periods of remission (times when no symptoms are evident) and exacerbation (times of acute symptomatology related to the condition), the condition still exists. An acute illness is temporary and episodic usually lasting a few days to a few weeks and typically resolves without sequelae.

The nurse has been caring for an 8-year-old girl with asthma. Her parents are compliant with her treatment regimen, and the girl has experienced no exacerbation of her symptoms in over 12 months. When the nurse inquires about her participation in sports or other extracurricular activities, the girl says that she can't participate because she is sick with asthma. Which response by the nurse would be most appropriate?

"Your activity is not limited; what types of things would you like to do?" The primary goal for the child's plan of care is to normalize the child's life as much as possible and promote the optimal health of the child. The nurse should remind the girl that her activity is not limited by her asthma and then elicit the types of activities the girl might enjoy. This will allow the nurse to address the specific considerations with each activity in relation to the girl's asthma. Telling her she is not sick, asking if she knew her condition doesn't limit exercise, and stating that many Olympic swimmers have asthma would be less likely to engage the girl in a dialogue about what she would like to do.

A nurse is taking a health history on a 10-year-old child with intellectual disability. The child is at risk for obesity. The parent states, "I do not allow my child to run and play because I'm afraid of accidents and falls." Which response would be most appropriate for the nurse to include when teaching this parent?

"Your child has the same diet and exercise needs as other children, and exercise will be a health benefit." Children with chronic illnesses need to exercise and play just as much as those without disabilities. The health benefits of exercise and play are significant. Exercise and play will aid in physical and developmental growth.

A nurse is interacting in conversation with the parents of an 8-year-old child with intellectual disability who wants to join a scout club at school. The parents explain that they are uncertain if this would be a good experience for their child. Which would be the best response by the nurse?

"Your child has the same socialization needs as other children who don't have an intellectual disability." Children with a diagnosis of intellectual disability or chronic illness have the same need for socialization as other children. Encouragement should be given to participation in activities with children of the same developmental age group. Children with intellectual disability should not be restricted to interactions with kids with a similar disability because it could limit their socialization.

The nurse is caring for a 2-year-old girl with spina bifida. The mother confides that she is depressed and feels that she has somehow contributed to her daughter's condition. Her guilt is compounded by her mother-in-law's accusations that the mother's poor nutrition during pregnancy caused the spina bifida. What should the nurse tell the mother?

"Your feelings are normal, and it is important to talk about this" A parent's belief that they somehow did something wrong that contributed to their child's chronic condition is normal. It is important to encourage the mother to talk about her feelings and acknowledge their normalcy. Telling the mother she didn't do anything wrong dismisses her concerns and would likely put an end to the conversation. Asking her what she thinks she did wrong might potentially validate her fears. Suggesting she simply ignore her in-laws comments is not helpful and does not address the mother's concerns.

Which parental action identified by the nurse potentially delays the ability of the child with a chronic condition to exhibit signs of appropriate growth and development?

Being overprotective The family caregivers may become overprotective and prevent the child from exhibiting growth and development appropriate for age and disability. It is the role of the nurse to help the family recognize the child's potential and set realistic growth and development goals. Group activities are encouraged for engaging in social interaction. Exercising with the child is good for both child and parent and promotes physical development. Maintaining a calorie-based diet is useful in healthy weight gain.

A 12-year-old sibling of a child with Down syndrome is overheard telling a friend from school on the telephone, "I don't have any brothers or sisters. I am an only child." What does this child feel about the sibling with Down syndrome?

By having a sibling with Down syndrome, a stigma is attached to him or her. Siblings may feel that having a brother or sister with a chronic illness is a stigma, a mark of embarrassment or shame, especially if the ill child has a physical disfigurement or apparent cognitive deficit. Siblings may choose not to tell others about the ill child or may be selective in whom they tell, choosing to tell only those they can trust.

The nurse is caring for a 3-year-old with an exacerbation of a chronic condition that was diagnosed at birth. The nurse assesses that the caregiver is a single parent and she appears frustrated and angry with the nursing staff. She states that she has other children at home that she had to get the neighbor to watch. What is an appropriate nursing diagnosis to include in the plan of care for this patient?

Risk for caregiver role strain related to no other caregivers Families that have a child with a chronic condition meet many obstacles in the adjustment of the child's illness. The disruption within the family can cause stress on the caregiver and the family relationships, and may impact the siblings based on the degree of interruption of family life. This may be exhibited in the emotions expressed by the caregiver. In this scenario, the caregiver is a single parent and she states that she had to seek help from a neighbor; therefore, she has a risk for caregiver role strain. The other nursing diagnosis are not appropriate for this family at this time because there is not enough information to support them.

The nurse is caring for a family who has twins and one twin has a chronic condition. The parent states that both children require discipline but are unsure which approach is best. Which nursing suggestion is most helpful?

Set appropriate limits for both and hold them to those limits. When instructing on discipline, it is understood that the two children may have different functional abilities but a common factor is that appropriate limits/boundaries need to be set with both children. These boundaries establish a comfort zone and, if crossed, allow the parent to initiate discipline. All children require boundaries to be established. This information is most helpful to the parents. The parent realizes that the children are unique and flexibility in parenting is sometimes needed. Assigning chores does not refer to discipline.

Which educational topic is often overlooked when teaching an adolescent about living with a chronic condition?

Sexuality All aspects of an adolescent's development must be addressed when instructing on living with a chronic condition. Health care providers are comfortable with topics of smoking, drinking alcohol, and drugs but uncomfortable with talking about sex.

A newborn is diagnosed with spina bifida. What initial reactions might the nurse expect to observe in the parents of the newborn? Select all that apply.

Shock Disbelief Denial When family caregivers learn of a child's diagnosis, their first reactions may be shock, disbelief, and denial. These reactions last for varied times, from days to months. The initial response may be of mourning for the "perfect" child lost, combined with guilt, blame, and rationalization.

The school nurse is observing a middle school child with a chronic condition participating in a group activity in school. As the child is moving his/her wheelchair to find a partner, which situation would the nurse note as encouraging social exclusion? Select all that apply.

Small spaces where a wheelchair cannot fit An activity which is difficult for the client to do Allowing students to partner without including the client Social exclusion is when the client is unable to be included due to the chronic condition or being excluded by the other participants. If the client cannot fit into a space, that excludes the client from the activity. If the chronic condition makes it difficult to participate in an activity, the child may not want to participate or be excluded by peers. Allowing students to partner while not including the child encourages social isolation.

To get a 7-year-old child with a chronic illness motivated to complete daily physical tasks, which reward does the nurse identify as best?

Stickers for a reward chart For the 7-year-old child, stickers to represent earning a reward are best for motivation. It is helpful to use a chart to help the child reach a goal. School-aged children often respond well to completing a task and being rewarded. Preschoolers particularly will complete tasks for praise. Food is also frequently used for a reward. An older child would appreciate the opportunity to care for self more than a younger child.

Who does the nurse identify as the primary advocate for the child with a chronic condition?

The caregivers The caregivers are the primary advocates. The caregivers know the client best and can advocate for as much normalcy in the client's life. The other individuals know a portion of the client's life but not the complete person.

The parents of a child who has just been diagnosed with a chronic illness state that they are "shocked" and "dismayed" at the diagnosis. They make the following statement to the nurse: "We have an appointment with another specialist closer to our home to have our child seen by that provider." Which of the following would most likely be a reason the caregivers might make a statement like this?

The caregivers are hoping to find the diagnosis is incorrect. The caregivers may seek advice from other professionals and actually may go "shopping" for another health-care provider, hoping to find the diagnosis is incorrect or not as serious as they have been told.

At which point in life could you anticipate the parents of a child with a long-term illness might have the hardest time accepting her condition?

The day she would have started college "Milestones" in life may be the hardest times for parents to accept because when their child does not achieve these, they are reminded of the problem.