The Child with a Chronic or Complex Condition

The Child with a Chronic or Complex Condition 150 150 Tony Guo

The Child with a Chronic or Complex Condition

  • Developmental aspects
Developmental Tasks Potential effects of Chronic illness or Disability Supportive Intervention
Develop a sense of trust Multiple caregivers and frequent separations, especially if hospitalized Encourage consistent caregivers in hospital or other care settings.
Deprived of consistent nurturing Encourage parental presence, “rooming in” during hospitalization, and participation in care.
Bond, or attach, to parent Delayed because of separation; parental grief for loss of “dream” child; parental inability to accept the condition, especially a visible defect Emphasize healthy, perfect qualities of infant.

Help parents learn special care needs of infant for them to feel competent.

Learn through sensorimotor experiences More exposure to painful experiences than pleasurable ones Expose infant to pleasurable experiences through all senses (touch, hearing, sight, taste, movement).
Limited contact with environment from restricted movement or confinement Encourage age-appropriate developmental skills (e.g., holding bottle, finger feeding, crawling).
Begin to develop a sense of separateness from parent Increased dependency on parent for care Encourage all family members to participate in care to prevent overinvolvement of one member.
Overinvolvement of parent in care Encourage periodic respite from demands of care responsibilities.
Develop autonomy Increased dependency on parent Encourage independence in as many areas as possible (e.g., toileting, dressing, feeding).
Master locomotor and language skills Limited opportunity to test own abilities and limits Provide gross motor skill activity and modification of toys or equipment, such as modified swing or rocking horse.
Learn through sensorimotor experience, beginning preoperational thought Increased exposure to painful experiences Give choices to allow simple feeling of control (e.g., choice of what book to look at, what kind of sandwich to eat).

Institute age-appropriate discipline and limit setting.

Recognize that negative and ritualistic behaviors are normal.

Provide sensory experiences (e.g., water play, sandbox play, finger painting).

Preschool Age
Develop initiative and purpose

Master selfcare skills

Limited opportunities for success in accomplishing simple tasks or mastering self-care skills Encourage mastery of self-help skills.

Provide devices that make tasks easier (e.g., self-dressing).

Begin to develop peer relationships Limited opportunities for socialization with peers; may appear “like a baby” to age mates

Protection within tolerant and secure family, causing child to fear criticism and withdraw

Encourage socialization (e.g., inviting friends to play, day care experience, trips to park).

Provide age-appropriate play, especially associative play opportunities.

Emphasize child’s abilities; dress appropriately to enhance desirable appearance

Develop sense of body image and sexual identification Awareness of body centering on pain, anxiety, and failure

Sex-role identification focused primarily on mothering skills

Encourage relationships with same-sex and opposite-sex peers and adults.
Learn through preoperational thought (magical thinking) Guilt (thinking he or she caused the illness or disability or is being punished for wrongdoing) Help child deal with criticisms; realize that too much protection prevents child from realities of world.

Clarify that cause of child’s illness or disability is not his or her fault or a punishment.

School Age
Develop a sense of accomplishment Limited opportunities to achieve and compete (e.g., many school absences, inability to join regular athletic activities) Encourage school attendance; schedule medical visits at times other than school; encourage child to make up missed work.
Form peer relationships Limited opportunities for socialization Educate teachers and classmates about child’s condition, abilities, and special needs.

Encourage sports activities (e.g., Special Olympics).

Encourage socialization (e.g., Girl Scouts, Campfire, Boy Scouts, 4-H Club; having a best friend or club membership).

Learn through concrete operations Incomplete comprehension of the imposed physical limitations or treatment of the disorder Provide child with information about his or her condition.

Encourage creative activities (e.g., VSA Arts).

Develop personal and sexual identity Increased sense of feeling different from peers and reduced ability to compete with peers in appearance, abilities, special skills Help child realize that many of the difficulties the teenager is experiencing are part of normal adolescence (rebelliousness, risk taking, lack of cooperation, hostility toward authority).
Achieve independence from family Increased dependency on family; limited job or career opportunities Provide instruction on interpersonal and coping skills.

Encourage increased responsibility for care and management of the disease or condition (e.g., assuming responsibility for making and keeping appointment [ideally alone], sharing assessment and planning stages of health care delivery, contacting resources).

Discuss planning for future and how condition can affect choices.

Form heterosexual relationships Limited opportunities for heterosexual friendships; less opportunity to discuss sexual concerns with peers

Increased concern with issues such as why did he or she get the disorder and whether he or she will marry and have a family

Encourage socialization with peers, including peers with special needs and those without special needs.

Encourage activities appropriate for age (e.g., attending mixed-sex parties, sports activities, driving a car).

Be alert to cues that signal readiness for information regarding implications of condition on sexuality and reproduction.

Emphasize good appearance and wearing stylish clothes, use of makeup.

Understand that adolescent has same sexual needs and concerns as any other teenager.

Learn through abstract thinking Decreased opportunity for earlier stages of cognition impeding achievement of level of abstract thinking Provide instruction on decision making, assertiveness, and other skills necessary to manage personal plans.


  • Coping mechanisms
    • Children with more positive and accepting attitudes about their chronic illness use a more adaptive coping style characterized by optimism, competence, and compliance.
    • Coping patterns used by children with special needs
      • Develops competence and optimism: 
        • Accentuates the positive aspects of the situation and concentrates more on what he or she has or can do than on what is missing or on what he or she cannot do; is as independent as possible
      • Feels different and withdraws: 
        • Sees self as being different from other children because of the chronic health condition; views being different as negative; sees self as less worthy than others; focuses on things he or she cannot do, and sometimes over-restricts activities needlessly
      • Is irritable, is moody, and acts out: 
        • Uses proactive and self-initiated coping behaviors, although usually counterproductive in that the behaviors are not ego enhancing or socially responsible and do not result in desired outcomes; acts out irritability, which may or may not be associated with condition’s symptoms
      • Complies with treatment: 
        • Takes necessary medications, treatments; adheres to activity restrictions; also uses behaviors that indicate developing independence (e.g., assumes responsibility for taking medication)
      • Seeks support: 
        • Talks with adults, children, physicians, and nurses; develops plans to handle problems as they occur; uses downward comparison (i.e., realizes that others have it worse)
    • Hopefulness
      • Hopefulness is an internal quality that mobilizes humans into goal-directed action that may be satisfying and life sustaining.
    • Health education and self-care
      • Children need information about their condition, the therapeutic plan, and how the disease or the therapy might affect their situation. 
      • Children nearing puberty also need to understand the maturation process and how their chronic illness may alter this event.
  • Responses to parental behavior
    • Parental behavior toward the child is one of the most important factors influencing the child’s adjustment. 
    • Children’s perceptions of their mothers’ support and maternal perceptions of the psychosocial impact of the child’s chronic illness on the family were shown to be two of the greatest predictors of children’s psychologic adjustment
  • Type of illness or condition
    • The type of illness or condition also influences the child’s emotional response. 
    • Interestingly, children with more severe disorders often cope better than those with milder conditions.
    • Children’s cognitive ability and the timing of onset of abstract thinking in adolescence, an obvious condition may be easier for them to accept because its limitations are concrete.
    • The onset of a disabling condition may generate a state of confusion for children, who may have trouble differentiating between actual bodily functions and their image of their bodies.
    • They may also experience problems in identifying themselves and those extensions of self (e.g., wheelchairs, braces, crutches, other mechanical or prosthetic devices) and may have difficulty in accepting functional aids.


Nursing Care of the family and child with a chronic or complex condition

  • Assessment
    • Affecting of factors affecting family adjustment
Factors Affecting Adjustment Assessment Question
Available Support System
Status of marital relationship To whom do you talk when you have something on your mind? (If answer is not the spouse, ask for the reason.)
Alternate support systems When something is worrying you, what do you do?
What helps you most when you are upset?
Ability to communicate Does talking seem to help when you feel upset?
Perception of the Illness or Disability
Previous knowledge of disorder Have you ever heard the word (name of diagnosis) before? Tell me about it (if answer is yes).
Imagined cause of disorder What are your thoughts about the causes of the disorder?
Effects of illness or disability on family How has your child’s illness or disability affected you and your family?
How has your lifestyle changed?
Coping Mechanisms
Reactions to previous crises Tell me one time you’ve had another crisis (problem, bad time) in your family. How did you solve that problem?
Reactions to the child Do you find yourself being a little more cautious with this child than with your other children?
Childrearing practices Do you feel as comfortable disciplining this child as your other children?
Influence of religion  Has your religion or faith been of help to you? Tell me how (if answer is yes).
Attitudes  How is this child different from the siblings or other children of similar age?
Describe your child’s personality. Is it easy, difficult, or in between?
When you think of your child’s future, what thoughts come to mind?
Available Resources
What parts of your child’s care are causing the most difficulty for you or your family?
What services are available to help?
What services do you need that currently are not available?
Concurrent Stresses
What other problems are you facing now? (Be specific; ask about financial, marital, sibling, and extended family or friends concerns.)
  • Provide support at the time of diagnosis
    • Situations requiring special consideration
      • Congenital Anomaly
        • Tension in the delivery room conveys the sense that something is seriously wrong. Communication is often delayed while the physician is involved with the mother’s care. The way the infant is presented may well set the tone for the early parent-child relationship.
        • Clarify role with physician regarding revealing information to enable immediate parental support.
        • Explain to parents briefly in simple language what the defect is and something concerning the immediate prognosis before showing them the infant. Later more information can be given when they are more ready to “hear” what is said.
        • Be aware of nonverbal communication. Parents watch facial expressions of others for signs of revulsion or rejection.
        • Present infant as something precious.
        • Emphasize well-formed aspects of infant’s body.
        • Allow time and opportunity for parents to express their initial response.
        • Encourage parents to ask questions, and provide honest, straightforward answers without undue optimism or pessimism.
      • Cognitive Impairment
        • Unless cognitive impairment (or mental retardation) is associated with other physical problems, it is often easy for parents to miss clues to its presence or to make defensive excuses regarding the diagnosis.
        • Plan situations that help parents become aware of the problem. 
        • Encourage parents to discuss their observations of child but withhold diagnostic opinions.
        • Focus on what the child can do and appropriate interventions to promote progress (e.g., infant stimulation programs) to involve parents in their child’s care while helping them gain an awareness of the child’s condition.
      • Physical Disability
        • If loss of motor or sensory ability occurs during childhood, the diagnosis is readily apparent. The challenge lies in helping the child and parents over the period of shock and grief and toward the phase of acceptance and reintegration.
        • Institute early rehabilitation (e.g., using a prosthetic limb, learning to read braille, learning to read lips).
        • Be aware that physical rehabilitation usually precedes psychologic adjustment.
        • When the cause of the disability is accidental, avoid implying that parents or child was responsible for the injury, but allow them the opportunity to discuss feelings of blame.
        • Encourage expression of feelings
      • Chronic Illness
        • Realization of the true impact may take months or years. Conflict over parents versus child’s concerns may result in serious problems. When condition is inherited, parents may blame themselves, or child may blame the parents.
        • Help each family member gain an appreciation of the others’ concerns.
        • Discuss hereditary aspect of condition with parents at time of diagnosis to lessen guilt and accusatory feelings.
        • Encourage child to express feelings by using third-person technique (e.g., “Sometimes when a person has an illness that was passed on by the parents, that person feels angry or bitter toward them”).
      • Multiple Disabilities
        • The child or parent may require additional time for the shock phase and may be able to attend to only one diagnosis before hearing significant information regarding other disorders.
        • Acknowledge parents’ understanding and acceptance of all diagnoses, especially when an obvious and more hidden disability coexists.
        • Appreciate the devastating consequences of more than one disability for a child, especially if they interfere with expressive-receptive abilities.
      • Terminal Illness
        • Parents require much support to deal with their own feelings and guidance in how to tell the child the diagnosis. They may want to conceal the diagnosis from the child. They may believe that the child is too young to know, will not be able to cope with the information, or will lose hope and the will to live.
        • Approach the subject of disclosure in a positive way by asking, “How will you tell your child about the diagnosis?” Help parents understand the disadvantages of not telling the child (e.g., deprives child of the opportunity to discuss feelings openly and ask questions, incurs the risk of child learning the truth from outside and sometimes less tactful sources, may lessen child’s trust and confidence in the parents after learning the truth).
        • Guide parents to see the potential problems involved in fostering a conspiracy.
        • Offer parents guidelines for how and what to tell the child about the disease or the possibility of death. Explanations should be tailored to child’s cognitive ability, be based on knowledge child already has, and be honest. Honesty must be tempered with concern for child’s feelings.
        • Assure parents that telling a child the name of the illness and the reason for treatment instills hope, provides support from others, and serves as a foundation for explaining and understanding subsequent events.
        • Acknowledge that being honest is not always easy because the truth may prompt the child to ask other distressing questions, such as “Am I going to die?” However, even this difficult question must be answered.
  • Supporting family’s coping methods
    • Parents
      • Developing successful parent-professional partnerships
        • Promote primary nursing; in nonhospital settings, designate a case manager.
        • Acknowledge parents’ overall competence and their unique expertise with their child.
        • Respect parents’ time as having value equal to that of other members of child’s health care team.
        • Explain or define any medical, technical, or discipline-specific terms.
        • Tell families, “I am not sure” or “I don’t know” when appropriate.
        • Facilitate family’s effectiveness in team meetings (e.g., provide parents with same information as other participants).
      • Parents can be encouraged to discuss their feelings toward the child, the impact of this event on their marriage, and associated stresses such as financial burdens. 
      • For most families, regardless of their income or insurance coverage, financial concerns exist. 
      • The costs of caring for a child with special needs can be overwhelming.
      • One or both parents may have to sacrifice job opportunities to remain close to a medical facility or to avoid losing insurance benefits. 
      • Numerous volunteer and community resources are available that provide assistance, rehabilitation, equipment, and funding for a variety of health problems. 
      • National and local disease-oriented organizations may provide needed assistance and support to families that qualify.
      • Parent-to-parent support
        • Just being with another parent who has shared similar experiences is helpful. 
          • It may not need to be a parent of a child with the same diagnosis, because parents in the process of adjusting to a child with special needs—or finding respite services, educational or rehabilitative services, special equipment vendors, and financial counseling—tread a common path.
        • Another strategy is to ask another parent to talk to the parents. 
          • The nurse should seek out a parent who is a good listener, has a nonjudgmental approach to differences in families, and possesses good advocacy and problem-solving skills.
        • Parent groups are rich resources for information. 
          • Nurses can assist in starting a group by identifying one or two parents as leaders; sharing with them the names, telephone numbers, and addresses of other families who have expressed both an interest and a willingness to release their phone number and address; and guiding them in how to initiate a first meeting.
      • Advocate for empowerment
        • Nurses can advocate for methods that foster opportunities for parent empowerment.
          • Nurses can suggest reimbursement for travel and child care plus stipends to enable parents’ voices to be heard at meetings and conferences.
    • The child
      • Through ongoing contacts with the child, the nurse 
        • Observes the child’s responses to the disorder, ability to function, and adaptive behaviors within the environment and with significant others
        • Explores the child’s own understanding of his or her illness or condition 
        • Provides support while the child learns to cope with his or her feelings
      • Children are encouraged to express their concerns rather than allowing others to express them for them because open discussions may reduce anxiety
      • Encouraging expression of emotion
        • Describe the behavior: 
          • “You seem angry at everyone.”
        • Give evidence of understanding: 
          • “Being angry is only natural.”
        • Give evidence of caring: 
          • “It must be difficult to endure so many painful procedures.”
        • Help focus on feelings: 
          • “Maybe you wonder why this happened to you.”
      • Promoting normalization
        • Preparation: 
          • Prepare child in advance for changes that may occur from the chronic or complex condition.
            • Tell the child in advance the possible side effects of drug therapy.
        • Participation: 
          • Include child in as many decisions as possible, especially those relating to his or her care regimen.
            • The child is responsible for taking medications or scheduling home treatments.
        • Sharing: 
          • Allow both family members and child’s peers to be a part of the care regimen whenever possible.
            • Give the child his or her medication when the other siblings receive their vitamins.
          • The parent cooks the same menu for the whole family.
          • If the child is invited to another’s home, the parent advises the family of the child’s dietary restrictions.
        • Control: 
          • Identify areas where child can be in control so that feelings of uncertainty, passivity, and helplessness are decreased.
            • The child identifies activities that are appropriate to his or her energy level and chooses to rest when fatigued.
        • Expectation: 
          • Apply the same family rules to the child with a complex chronic illness as to the well siblings or peers.
            • The child is disciplined, is expected to fulfill household responsibilities, and attends school in accordance with abilities.
    • Siblings
      • The presence of a child with special needs in a family may result in parents paying less attention to the other children. 
      • Siblings may respond by developing negative attitudes toward the child or by expressing anger in different forms. 
      • The nurse can help by using anticipatory guidance, questioning the parents about what they believe is the best way to have siblings respond to the child, and guiding them through ways to meet their other children’s needs for attention.
      • Siblings may also experience embarrassment associated with having a brother or sister with a chronic or complex condition.
      • Parents are then faced with the difficulty of responding to this embarrassment in an understanding and appropriate manner without punishing the siblings for how they feel. Parents are encouraged to talk with the siblings about how they view their affected sibling. 
        • Siblings of a child with developmental disabilities may express fears about their ability to bear normal children.
        • Many siblings benefit from sharing their concerns with other young people who are experiencing a similar situation. 
        • Support groups for siblings can help decrease isolation, promote expression of feelings, and provide examples of effective coping skills.
  • Educating about the disorder and general health care
    • Activities of daily living
      • Possible differences in nutritional requirements
      • Common problems are undernutrition resulting from food being 
        • Inappropriately restricted or loss of appetite
        • Vomiting or motor deficits that interfere with feeding
        • Overnutrition
          • Due to caloric intake in excess of energy expenditure because of boredom and lack of stimulation in other areas
    • Safe transportation
      • Modification regarding car safety
    • Primary health care
      • All the usual health care
      • Communication in an emergency
  • Promote Normal Development
    • Early childhood
      • Basic trust, separation from parents, beginning independence
        • Characteristics of parental overprotection
          • Sacrifices self and rest of family for the child
          • Continually helps the child, even when the child is capable
          • Is inconsistent with regard to discipline or uses no discipline; frequently applies different rules to the siblings
          • Is dictatorial and arbitrary, making decisions without considering
          • the child’s wishes, such as keeping the child from attending school
          • Hovers and offers suggestions; calls attention to every activity; overdoes praise
          • Protects the child from every possible discomfort
          • Restricts play, often because of fear that the child will be injured
          • Denies the child opportunities for growing up and assuming responsibility, such as learning to give own medications or perform treatments
          • Does not understand the child’s capabilities, and sets goals too high or too low
          • Monopolizes the child’s time, such as sleeping with the child, permitting few friends, or refusing participation in social or educational activities
    • School age
      • Industry/activity
        • Preparation for entry into or resumption of school is best accomplished through a team approach with the parents, child, teacher, school nurse, and primary nurse in the hospital. Ideally, this planning should begin before hospital discharge, provided that the child is well enough to resume usual activities.
        • They need preparation before entering or resuming school. 
          • Having a tutor in the hospital or home as soon as children are physically able helps them realize that school will continue and gives them time to consider this prospect
        • Children need the opportunity to interact with healthy peers and to engage in activities with groups or clubs composed of similarly affected agemates.
    • Adolescence
      • Developing independence/autonomy
        • Redefining autonomy in terms of individuals’ capacities to take responsibility for their own behavior, to make decisions regarding their own lives, and to maintain supportive social relationships.
  • Establish realistic future goals
    • Cultivate realistic vocations for the child with chronic illness or disabilities
    • Prolonged survival leads to new decisions and problems
      • Independent living
      • Marriage, employment, insurance coverage
      • Reproductive decisions


Principles of palliative care

  • Principles of palliative care
    • The World health Organization amended the definitive of palliative care for children to include the following:
      • Palliative care for children is the active total care of the child’s body, mind, and spirit and involves giving support to the family.
      • It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease.
      • Health care providers must evaluate and alleviate the child’s physical, psychologic, and social distress.
      • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
      • It can be provided in tertiary care facilities, in community health centers, and even in children’s homes.
    • Pain and symptom management
  • Decision-making at end of life
    • Ethical considerations
    • Physicians, health care team
    • Parents
    • The dying child
      • Children’s understanding of and reactions to death
Concepts of Death Reactions to Death Nursing Care Management
Infants and Toddlers
Death has least significance to children younger than 6 months of age.

After parent-child attachment and trust are established, the loss, even if temporary, of the significant person is profound.

Prolonged separation during the first several years is thought to be more significant in terms of future physical, social, and emotional growth than at any subsequent age.

Toddlers are egocentric and can only think about events in terms of their own frame of reference—living.

Their egocentricity and vague separation of fact and fantasy make it impossible for them to comprehend absence of life.

Instead of understanding death, this age group is affected more by any change in lifestyle. 

With the death of someone else, they may continue to act as though the person is alive.

As children grow older, they will be increasingly able and willing to let go of the dead person.

Ritualism is important; a change in lifestyle could be anxiety producing.

This age group reacts more to the pain and discomfort of a serious illness than to the probable fatal prognosis.

This age group also reacts to parental anxiety and sadness.

Help parents deal with their feelings, allowing them greater emotional reserves to meet the needs of their children.

Encourage parents to remain near child as much as possible yet be sensitive to parents’ needs.

Maintain as normal an environment as possible to retain ritualism.

If a parent has died, encourage having a consistent caregiver for child.

Promote primary nursing.

Preschool children
Preschoolers believe their thoughts are sufficient to cause death; the consequence is the burden of guilt, shame, and punishment.

Their egocentricity implies a tremendous sense of self-power and omnipotence. 

They usually have some understanding of the meaning of death.

Death is seen as a departure, a kind of sleep.

They may recognize the fact of physical death but do not separate it from living abilities.

Death is seen as temporary and gradual; life and death can change places with one another.

They have no understanding of the universality and inevitability of death.

If they become seriously ill, they conceive of the illness as a punishment for their thoughts or actions.

They may feel guilty and responsible for the death of a sibling.

Greatest fear concerning death is separation from parents.

They may engage in activities that seem strange or abnormal to adults.

Because they have fewer defense mechanisms to deal with loss, young children may react to a less significant loss with more outward grief than to the loss of a very significant person. The loss is so deep, painful, and threatening that the child must deny it for a time to survive its overwhelming impact.

Behavior reactions such as giggling, joking, attracting attention, or regressing to earlier developmental skills indicate children’s need to distance themselves from tremendous loss.

Help parents deal with their feelings, allowing them greater emotional reserves to meet the needs of their children.

Help parents understand behavioral reactions of their children.

Encourage parents to remain near child as much as possible to minimize the child’s great fear of separation from parents.

If a parent has died, encourage having a consistent caregiver for child.

Promote primary nursing.

School-Age Children
Children still associate misdeeds or bad thoughts with causing death and feel intense guilt and responsibility for the event.

Because of their higher cognitive abilities, they respond well to logical explanations and comprehend the figurative meaning of words.

They have a deeper understanding of death in a concrete sense.

They particularly fear the mutilation and punishment that they associate with death.

They personify death as the devil, a monster, or the bogeyman.

They may have naturalistic or physiologic explanations of death.

By 9 or 10 years of age, children have an adult concept of death, realizing that it is inevitable, universal, and irreversible.

Because of their increased ability to comprehend, they may have more fears, for example: The reason for the illness 

Communicability of the disease to themselves or others

Consequences of the disease

The process of dying and death itself 

Their fear of the unknown is greater than their fear of the known.

The realization of impending death is a tremendous threat to their sense of security and ego strength.

They are likely to exhibit fear through verbal uncooperativeness rather than actual physical aggression.

They are interested in post-death services.

They may be inquisitive about what happens to the body.

Help parents deal with their feelings, allowing them greater emotional reserves to meet the needs of their children.

Encourage parents to remain near child as much as possible yet be sensitive to parents’ needs.

Because of children’s fear of the unknown, anticipatory preparation is important.

Because the developmental task of this age is industry, interventions of helping children maintain control over their bodies and increasing their understanding allow them to achieve independence, self-worth, and

self-esteem and avoid a sense of inferiority.

Encourage children to talk about their feelings and provide aggressive outlets.

Encourage parents to honestly answer questions about dying rather than avoiding the subject or fabricating euphemisms.

Encourage parents to share their moments of sorrow with their children.

Provide preparation for post-death services.

Adolescents have a mature understanding of death.

They are still influenced by remnants of magical thinking and are subject to guilt and shame.

They are likely to see deviations from accepted behavior as reasons for their illness.

Adolescents straddle transition from childhood to adulthood.

They have the most difficulty in coping with death.

They are least likely to accept cessation of life, particularly if it is their own.

Concern is for the present much more than for the past or the future.

They may consider themselves alienated from their peers and unable to communicate with their parents for emotional support, feeling alone in their struggle.

Adolescents’ orientation to the present compels them to worry about physical changes even more than the prognosis.

Because of their idealistic view of the world, they may criticize funeral rites as barbaric, money making, and unnecessary.

Help parents deal with their feelings, allowing them greater emotional reserves to meet the needs of their children.

Avoid alliances with either parent or child.

Structure hospital admission to allow for maximum self-control and independence.

Answer adolescents’ questions honestly, treating them as mature individuals and respecting their needs for privacy, solitude, and personal expressions of emotions.

Help parents understand their child’s reactions to death and dying, especially that concern for present crises (e.g., loss of hair) may be much greater than for future ones, including possible death.


  • Treatment options for terminally ill children
    • Hospital
      • Families may choose to remain in the hospital to receive care if the child’s illness or condition is unstable and home care is not an option or the family is uncomfortable with providing care at home.
      • Families are encouraged to bring familiar items from the child’s room at home.
        • There should be a consistent and coordinated care plan for the comfort of the child and family.
    • Home care
      • Home care is often the option chosen by physicians and families because of the traditional view that a child must be considered to have a life expectancy of less than 6 months to be referred to hospice care.
    • Hospice
      • Parents should be offered the option of caring for their child at home during the final phases of an illness with the assistance of a hospice organization
      • Hospice is a community health care organization that specializes in the care of dying patients by combining the hospice philosophy with the principles of palliative care
      • Families may continue to see their primary care physicians as they choose
      • Hospice care is based on several important concepts that significantly set it apart from hospital care:
        • Family members are usually the principal caregivers and are supported by a team of professional and volunteer staff.
        • The priority of care is comfort. The child’s physical, psychosocial, and spiritual needs are considered. Pain and symptom control are primary concerns, and no extraordinary efforts are used to attempt a cure or prolong life.
        • The family’s needs are as important as those of the patient.
        • Hospice is concerned with the family’s post-death adjustment, and care may continue for 1 year or longer.

Nursing care of the child and family at end of life

  • Regardless of where the child is cared for during the terminal stage of illness, both the child and the family usually experience fear of
    • Pain and suffering
    • Dying alone (child) or not being present when the child dies (parent)
    • Actual death
  • Fear of pain and suffering
    • Pain and symptom management
      • Ethical principle of double effect
        • An action that has one good (intended) and one bad (unintended but foreseeable) effects is permissible if the following conditions are met:
          • The action itself must be good or indifferent. Only the good consequences of the action must be sincerely intended.
          • The good effect must not be produced by the bad effect.
          • There must be a compelling or proportionate reason for permitting the foreseeable bad effect to occur.
    • Parents’ and siblings’ need for education and support
      • This empowers parents and provides a sense of control over the child’s comfort and well-being, reducing their fear that their child will be in pain or suffering as he or she is dying.
        • Better bereavement outcomes (e.g., adaptive coping, family cohesion, and less anxiety, stress, and depression) have been reported by parents who were actively involved in the care of their child
      • Nurses can assist the family by helping the parents identify ways to involve siblings in the caring process, perhaps by bringing some supplies or a favorite toy, game, or food item. 
        • Parents should also be encouraged to schedule time focusing on the siblings.
        • Helping parents identify a trusted friend or family member who can sit with the ill child for a short period will allow them to attend to their own needs or those of their other children.
  • Fear of dying alone or of not being present when the child dies
    • When a child is being cared for at home, the burden of care on parents and family members can be great. 
      • Often, as the child’s condition declines, family members begin the “death vigil.” 
      • Rarely is a child left alone for any length of time. 
    • This can be exhausting for family members, and nurses can assist the family by helping them arrange shifts so that friends or family members can be present with the child and allow others to rest. 
    • If the family has limited resources, community organizations, such as hospice or churches, often have volunteers who are willing to visit and sit with children. 
    • It is important that whoever is sitting with the child be aware of when the parent(s) would like to be notified to return to the child’s bedside
    • When a child is dying in the hospital, the parents should be always given full access to the child.
    • If the parents need to leave, they should be provided with a pager or other means of immediate communication and alerted if staff members note any change in the child that may indicate imminent death. 
    • Nurses should advocate for parents’ presence in intensive care and emergency departments and attend to the parents’ needs for food, drinks, comfortable chairs, blankets, and pillows.
  • Fear of actual death
    • Home deaths
      • Physical signs of approaching death
        • Loss of sensation and movement in the lower extremities, progressing toward the upper body
        • Sensation of heat, although the body feels cool
        • Loss of senses:
          • Tactile sensation decreasing
          • Sensitivity to light
          • Hearing the last sense to fail
        • Confusion, loss of consciousness, slurred speech
        • Muscle weakness
        • Loss of bowel and bladder control
        • Decreased appetite and thirst
        • Difficulty swallowing
        • Change in respiratory pattern:
          • Cheyne-Stokes respirations (waxing and waning of depth of breathing with regular periods of apnea)
          • “Death rattle” (noisy chest sounds from accumulation of pulmonary and pharyngeal secretions)
        • Weak, slow pulse; decreased blood pressure
    • Hospital deaths
      • Children dying in the hospital who are receiving supportive care interventions experience a similar process. 
      • Death resulting from accident or trauma or acute illness in settings such as the emergency department or intensive care unit, often requires the active withdrawal of some form of life-supporting intervention, such as a ventilator or bypass machine.
      • These situations often raise difficult ethical issues, and parents are often less prepared for the actual moment of death.
      • Nurses can assist these parents by providing detailed information about what will happen as supportive equipment is withdrawn, ensuring that appropriate pain medications are administered to prevent pain during the dying process and allowing the parents time before the start of the withdrawal to be with and speak to their child.
      • It is important that the nurse attempt to control the environment around the family at this time by providing privacy, asking if they would like to play music, softening lights and monitor noises, and arranging for any religious or cultural rituals that the family may want performed.


Organ or tissue donation and autopsy

  • Meaningfulness of acting to benefit another human being
  • Common questions asked by families
  • Sensitive approach
  • Organ donation: Legislated in many states
  • Unexplained or violent death
    • Autopsy may be required by law


  • Grief and Mourning
    • Grief: A process
    • Highly individualized
      • Parental grief
        • Along with experience the primary loss of their child, many secondary losses are felt, such as 
          • The loss of part of oneself
          • Hopes and dreams for the child’s future
          • The family unit
          • Prior social and emotional community supports
          • Often spousal support.
        • Studies with bereaved parents have shown that grieving does not end with the severing of the bond with the deceased child but rather involves a continuing bond between the parent and the deceased child
        • Parental resolution of grief is a process of integrating the dead child into daily life in which the pain of losing a child is never completely gone but lessens
        • A child’s death can also challenge the marital relationship in several ways. 
        • Maternal and paternal reactions often differ
      • Sibling grief
        • Children grieve differently than adults
          • Their understanding and reactions to death depend on their age and developmental level.
          • Children grieve for a longer duration, revisiting their grief as they grow and develop new understandings of death. 
            • They do not grieve 100% of the time. 
            • They grieve in spurts and can be emotional and sad in one instance and then, just as quickly, off and playing.
            • Children express their grief through play and behavior.
            • Children can be exquisitely attuned to their parents’ grief and will try to protect them by not asking questions or by trying not to upset them. 
            • This can set the stage for the sibling to try to become the “perfect child.”
          • Children exhibit many of the grief reactions of adults, including physical sensations and illnesses, anger, guilt, sadness, loneliness, withdrawal, acting out, sleep disturbances, isolation, and search for meaning. 
        • Nurses should be attentive for signs that siblings are struggling with their grief and provide guidance to parents when possible.
    • Supporting grieving families
      • General
        • Stay with the family; sit quietly if they prefer not to talk; cry with them if desired.
        • Accept the family’s grief reactions; avoid judgmental statements (e.g., “You should be feeling better by now”).
        • Avoid offering rationalizations for the child’s death (e.g., “Your child isn’t suffering anymore”).
        • Avoid artificial consolation (e.g., “I know how you feel,” or “You are still young enough to have another baby”).
        • Deal openly with feelings such as guilt, anger, and loss of self-esteem.
        • Focus on feelings by using a feeling word in the statement (e.g., “You’re still feeling all the pain of losing a child”).
        • Refer the family to an appropriate self-help group or for professional help if needed.
      • At the time of death
        • Reassure the family that everything possible is being done for the child if they want lifesaving interventions.
        • Do everything possible to ensure the child’s comfort, especially relieving pain.
        • Provide the child and family with the opportunity to review special experiences or memories in their lives.
        • Express personal feelings of loss or frustration (e.g., “We will miss him so much,” “We tried everything; we feel so sorry that we couldn’t save her”).
        • Provide information that the family requests and be honest.
        • Respect the emotional needs of family members, such as siblings, who may need brief respites from the dying child.
        • Make every effort to arrange for family members, especially the parents, to be with the child now of death if they want to be present.
        • Allow the family to stay with the dead child for as long as they wish and to rock, hold, or bathe the child.
        • Provide practical help when possible, such as collecting the child’s belongings.
        • Arrange for spiritual support based on the family’s religious beliefs; pray with the family if no one else can stay with them.
      • Post Death
        • Attend the funeral or visitation if there was a special closeness with the family.
        • Initiate and maintain contact (e.g., sending cards, telephoning, inviting them back to the unit, making a home visit).
        • Refer to the dead child by name; discuss shared memories with the family.
        • Discourage the use of drugs and alcohol as a method of escaping grief.
        • Encourage all family members to communicate their feelings rather than remaining silent to avoid upsetting another member.
        • Emphasize that grieving is a painful process that often takes years to resolve.


Impact of Cognitive or Sensory Impairment on the Child and Family

  • Cognitive Impairment
    • Is a general term that encompasses any type of mental difficulty or deficiency
    • Used synonymously with “intellectual disability”
    • Diagnosis
      • Made after a period of suspicion by family or health professionals
      • In some instances, made at birth
  • Intellectual disability
    • Three components
      • Intellectual functioning
        • Subaverage intellectual function: IQ of 70 to 75 or below
      • Functional strengths and weaknesses
        • Impairment in 2 of 10 adaptive skills
      • Younger than age 18 at the time of diagnoses
  • Diagnosis and classification
    • Early signs suggestive of cognitive impairment
      • Dysmorphic syndromes (e.g., Down syndrome, fragile X syndrome [FXS])
      • Irritability or non-responsiveness to environment
      • Major organ system dysfunction (e.g., feeding or breathing difficulties)
      • Gross motor delay
      • Fine motor delay
      • Language difficulties or delay
      • Behavior difficulties
  • Etiology
    • Infection and intoxication, such as congenital rubella, syphilis, maternal drug consumption (e.g., fetal alcohol syndrome), chronic lead ingestion, or kernicterus
    • Trauma or physical agent (e.g., injury to the brain experienced during the prenatal, perinatal, or postnatal period)
    • Inadequate nutrition and metabolic disorders, such as phenylketonuria or congenital hypothyroidism
    • Gross postnatal brain disease, such as neurofibromatosis and tuberous sclerosis
    • Unknown prenatal influence, including cerebral and cranial malformations, such as microcephaly and hydrocephalus
    • Chromosomal abnormalities resulting from radiation; viruses; chemicals; parental age; and genetic mutations, such as Down syndrome and FXS
    • Gestational disorders, including prematurity, low birth weight, and post-maturity
    • Psychiatric disorders that have their onset during the child’s developmental period up to 18 years of age, such as autism spectrum disorders (ASDs)
    • Environmental influences, including evidence of a deprived environment associated with a history of intellectual disability among parents and siblings


  • Nursing care of children with impaired cognitive function
    • Educate child and family
      • Early intervention
        • A systematic program of therapy, exercises, and activities designed to address developmental delays in children with disabilities to help achieve their full potentials
        • The child’s education should begin as soon as possible, because it has been shown that increased and early intervention exposure relates directly to greater improvements in cognitive development
    • Teach child self-care skills
      • Before beginning a self-feeding program, the nurse performs a task analysis.
      • After a task analysis, the child is observed in a particular situation, such as eating, to determine what skills are possessed and the child’s developmental readiness to learn the task. 
      • Family members are included in this process, because their “readiness” is as important as the child’s. 
      • Numerous self-help aids are available to facilitate independence and can help eliminate some of the difficulties of learning, such as using a plate with suction cups to prevent accidental spills
    • Promote child’s optimal development
      • It requires appropriate guidance for establishing acceptable social behavior and personal feelings of self-esteem, worth, and security.
        • They must arise from the genuine love and caring that exist among family members
      • Ensuring the child’s physical well-being
        • Any congenital defects, such as cardiac, gastrointestinal, or orthopedic anomalies, should be repaired. 
        • Plastic surgery may be considered when the child’s appearance can be substantially improved. 
        • Dental health is significant, and orthodontic and restorative procedures may improve facial appearance immensely.
    • Encourage play and exercise
      • The nurse will need to guide parents toward selection of suitable play and exercise activities
      • The type of play is based on the child’s developmental age, although the need for sensorimotor play may be prolonged
      • Parents should use every opportunity to expose the child to as many different sounds, sights, and sensations as possible. 
      • Appropriate toys include musical mobiles, stuffed toys, floating toys, a rocking chair or horse, a swing, bells, and rattles. 
      • The child should be taken on outings, such as trips to the grocery store or shopping center.
    • Provide means of communication
      • Some children may need tongue exercises to correct the tongue thrust or gentle reminders to keep the lips closed.
      • Nonverbal communication may be appropriate for some of these children, and various devices are available
      • For children with physical limitations, several adaptations or types of communication devices are available to facilitate selection of the appropriate picture or word
    • Establish discipline
      • Control measures are based primarily on teaching a specific behavior rather than on understanding the reasons behind it.
      • Stressing moral lessons is of little value to a child who lacks the cognitive skills to learn from self-criticism or evaluation of previous mistakes. 
      • Behavior modification, especially reinforcement of desired actions, and use of time-out procedures are appropriate forms of behavior control.
    • Encourage socialization
      • Opportunities for social interaction and infant stimulation programs should began at an early age
        • Parents should be encouraged early to teach their child socially acceptable behavior: waving goodbye, saying “hello” and “thank you,” responding to his or her name, greeting visitors, and sitting modestly. 
        • The teaching of socially acceptable sexual behavior is especially important to minimize sexual exploitation. 
        • Parents also need to expose the child to strangers so that he or she can practice manners, because there is no automatic transfer of learning from one situation to another.
    • Provide information on sexuality
      • This may pose a level of difficulty to the parents
        • Possibility of pregnancy
        • Future plans to marry
        • Ability to be independent
      • The nurse should help in this area by providing parents with information about sexuality education that is geared to the child’s developmental level.
        • Adolescent girls need a simple explanation of menstruation and instructions on personal hygiene during the menstrual cycle
        • Practical sexual information regarding anatomy, physical development, and conception
          • Because they are easy to persuade and lack judgment, they need a well-defined, concrete code of conduct with specific instructions for handling certain situations.
    • Help families adjust to future care
      • Older parents may not be able to continue care responsibilities after they reach retirement or older age. 
      • The decision regarding residential placement is a difficult one for families, and the availability of such facilities varies widely. 
      • The nurse’s role includes assisting parents in investigating and evaluating programs and helping parents adjust to the decision for placement
    • Care for the child during hospitalization
      • To prevent engaging in this nontherapeutic approach, nurses must use the mutual participation model in planning the child’s care.
      • Parents should stay with their child but not be made to feel as if the responsibility is totally theirs.
      • The nurse also assesses the child’s functional level of eating and playing; ability to express needs verbally; progress in toilet training; and relationship with objects, toys, and other children. 
      • The child is encouraged to be as independent as possible in the hospital.
    • Assist in measures to prevent cognitive impairment
      • Counseling and education can reduce or eliminate such factors (e.g., poor nutrition, cigarette smoking, chemical abuse), which increase the risk for prematurity and intrauterine growth restriction.
      • Interventions are directed toward improving maternal health by educating women regarding the dangers of chemicals, including 
        • Prenatal alcohol exposure, which affects organogenesis, craniofacial development, and cognitive ability.
        • Adequate prenatal care
        • Optimal medical care of high-risk newborns
        • Rubella immunization
        • Genetic counseling
        • Prenatal screening, especially in terms of Down syndrome or FXS. 
      • The use of folic acid supplements prevents neural tube defects during pregnancy and during the childbearing years; and the use of newborn screening for treatable inborn errors of metabolism (e.g., congenital hypothyroidism, phenylketonuria, and galactosemia) are early appropriate therapies to prevent developmental disabilities in children.

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