Caring for the Child with a Chronic Condition or the Dying Child

1
Chapter 35

• Caring for the Child with a Chronic Condition or
  the Dying Child

2
A Chronic Condition

• Persists over 3 months or recovery progresses
  slowly
• A physical, psychosocial, or cognitive impairment
  that places limitations on the child
• May require that the child and family rely on
  assistance (adaptive devices)
• Can be a congenital defect occur during fetal
  development occur at birth be a genetic
  predisposition be acquired through illness,
  accident, or injury and may lead to a childs
  death

3
Examples of Chronic Conditions

• Braincerebral palsy or a seizure disorder
• Heartcongenital or acquired heart disease
• Lungscystic fibrosis, bronchopulmonary dysplasia
  (BPD), or asthma
• Muscular or skeletalmuscular dystrophy or
  skeletal malformations
• Abdominal organskidneys (renal failure), liver
  (cirrhosis), or intestine (short bowel syndrome)
• Skineczema, dermatitis, or conditions such as
  Lyme disease that can cause chronic arthritis
• Psychologicaldepression, bipolar disorder, or
  autism
• CognitiveDown syndrome, developmental or
  learning disabilities

4
A Chronic Condition and Its Relationship to
Technology

• Technology  dependent means the child is reliant
  on some type of medical device to compensate for
  the loss of normal use of a vital body function.
• The Technology Related Assistance for Individuals
  with Disabilities Act Amendments of 1994 provide
  for programs that support the development,
  acquisition, or application of assistive
  technology devices or equipment to assist the
  child living with limitations.
• The child may also require substantial skilled
  nursing care to avert death and further
  disability.

5
Impact of a Chronic Condition

• Creates a threat of the unknown, loss of control,
  and have long-term effects
• Causes frequent hospitalizations or clinic visits
  to be needed
• Disrupts normal home routines
• Places more demand on the caregiver
• May cause parents to become controlling and
  overprotective
• Causes child to have to cope with unfamiliar
  people, places, and medical treatments
• May cause family to be overwhelmed and experience
  social, financial, and psychological strain

6
Impact of the Chronic Condition on the Infant

• Impact
• Alters bonding process
• May have pain
• Changes in diet and sleep may alter growth and
  development
• Nursing care
• Rock, hold, comfort, and use a soothing voice
• Provide visual and auditory stimulation
• Group nursing care measures and protect nap time
• Maintain the crib as a safe place
• Encourage parents to hold the infant
• Encourage siblings to visit

7
Impact of the Chronic Condition on the Toddler

• Impact
• Unable to accomplish autonomy
• Pain, anxiety, and separation from parents
• Sensitive to bodily harm
• Hindered gross and fine motor development
• Stress and regression present

• Nursing care
• Maintain bond between parents and child
• Promote realistic developmental skills
• Do not react negatively to regression
• Praise child for attempts at self-care
• Instruct parents on realistic methods of
  discipline
• Manage pain
• Maintain home routine as much as possible
• Allow child to express feelings through play

8
Impact of the Chronic Condition on the
Preschooler

• Impact
• Feels he or she is punished for wrongdoing
• Reacts aggressively
• Regresses
• Withdraws from others
• May have difficulty sleeping (fear going to sleep)

• Nursing care
• Provide with the opportunity to express fears and
  frustrations
• Tell stories and read books
• Allow the preschooler to use dramatic play
• Ask the child-life specialist for assistance
• Maintain a normal home schedule as much as
  possible and enforce consistent limits
• Reassure child that nothing he or she did caused
  the illness
• Be honest when explaining and preparing the child
  for procedures
• Understand limited concept of time

9
Impact of the Chronic Condition on the
School-Age Child

• Impact
• Alters autonomy and peer relationships
• Interrupts independence
• Refuses to comply with treatments or comply with
  a special diet
• Cannot completely comprehend all information
  (reluctant to answer questions)
• May understand significance of illness and
  lifelong consequences

• Nursing care
• Assess pain
• Reassure that personal behavior has not caused
  illness
• Answer questions at a level the child can
  understand
• Use play as an outlet (unstructured)
• Include peers as much as possible
• Communicate to family about nonverbal cues
• Maintain open and honest dialogue

10
Impact of the Chronic Condition on the
Adolescent

• Impact
• Where to place the adolescentpediatric ward or
  adult floor?
• Dependence on caregivers
• Lack of privacy
• Maladaptive coping behaviors
• Refuses treatments
• Easily overwhelmed and may show regression
• Worries about condition, self-esteem, identity,
  and family
• Nursing care
• Provide solitary time
• Give realistic choices
• Include adolescent in medical-related matters
  when possible
• Use peer support and interaction
• May expand networks to include support groups and
  community programming

11
Impact of the Chronic Condition on the Sibling

• Impact
• Decreases self-esteem
• Receives less support from parents
• May have mood swings, lack understanding about
  the condition
• May display a negative attitude toward the ill
  sibling
• Feelings of jealousy, embarrassment, resentment,
  loneliness, and isolation
• Thinks that they caused the condition or might
  acquire the condition too
• Nursing care
• Instruct parents to maintain familiar home
  routines as much as possible
• Include the sibling in simple care
• Provide information about the ill child

12
Collaboration in Caring

• Child-life specialist
• An expert in child development and therapeutic
  play
• Called upon to work with a child who has been
  diagnosed with a chronic condition

13
The Child Living with aChronic Condition

• Children living with a chronic condition
  experience one or more of these symptoms
• Limitation in bodily functions appropriate for
  age and development
• Disfigurement
• Dependence on medical technology
• Dependence on medication or special diet to
  ensure normal functioning or control of the
  condition
• Ongoing need for medical care or related services
• Special ongoing treatments at home or at school

• Caregiver burden
• Daily health care regimes and complex schedule
• Limited time for self and marriage
• Psychological distress
• Financial burden
• Nursing care
• Discuss feeling with health care professional
• Suggest respite care

14
Emotional Responses to a Chronic Condition

• Responses
• Family equilibrium is disrupted
• Feelings of shock, chaos, anger, fear, disbelief,
  anxiety, pain, and stress (emotional roller
  coaster)
• Nursing care
• Communicate
• Sustain normal daily activity and incorporate
  treatment into a new daily routine
• Discuss important information (treatment,
  procedures, medicine, or visits to the hospital
  or clinic)
• Listen to parents
• Encourage spending quality time with the ill
  child
• Teach parents about chronic sorrow
• Give parents information about community
  resources

15
Important Aspects when Caring for a Child with a
Chronic Condition
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Establishing a Therapeutic Relationship

• It is important to establish a therapeutic
  relationship
• Nursing care
• Care may be technical as well as emotional
• Establish trust (see Critical Nursing Action
  Establishing Trust with the Family)

17
Growth and Development

• Growth failure means that the child grows more
  slowly and their height and weight are in a lower
  percentile on growth charts than for children of
  the same age
• Pathophysiology of the condition may affect the
  childs growth
• Treatment protocols associated with
  chemotherapeutic agents may hinder growth
• May see delayed development as well
• Nursing care
• Plot growth on charts for the National Center for
  Health Statistics
• Ensure adequate nutrition
• Encourage parents to maintain realistic
  developmental milestones
• Help the child interact with children of the same
  age
• Create a social network

18
Education

• All children, including those with a chronic
  condition, are entitled to education that is
  matched to the developmental and functional
  capabilities of the child
• School personnel must be informed about any
  conditions
• Teachers receive special training
• Resource allocation is needed to support the
  child
• Nursing care
• Discuss home schooling
• Observe federal laws providing educational
  services for children

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Cultural Issues

• Understanding ethnocultural aspects of the child
  who has a chronic condition is paramount
• Ethnocultural considerations emphasize cultural
  sensitivity in both the hospital and community
  settings
• Nursing care
• Assess the language and nonverbal cues being used
  by the child family
• Determine the locus of control and where the
  decision making process lies
• Consider the relevance of religious beliefs and
  spiritual practices
• Evaluate expressions of pain
• Assess hope
• Assess grief and reaction to death

20
The Dying Child
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Perceptions of Death

• Infant
• Based on the degree of discomfort and the
  reactions of the parent and others in the
  environment
• Toddler
• Separation from parents or disruption in routine
• Preschooler
• Magical thinkerillness or injury may be viewed
  as punishment for bad behaviors
• Concrete thinkerdeath should not be described as
  going to sleep

• School-age
• Understanding not precise until child can
  understand the concept of time
• After age 8 or 9, children understand the
  permanence of death
• Adolescent
• Adult level understanding and fear of dependence
• Difficulty accepting death as reality and often
  think that death can be defied

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Before the Child Dies

• Complete the institutions checklist to ensure
  policies and procedures are followed
• Contact the bereavement team
• Create a file and include community resources
• Make a follow-up ledger and phone call

23
Recognition of Physical Signs of Impending Death

• Loss of sensation
• Loss of ability of body to maintain
  thermoregulation skin may feel cool
• Loss of bowel and bladder function
• Loss of awareness, consciousness, and slurring of
  speech
• Alteration in respiratory status
• CheyneStokes respirations (a waxing and waning
  of respiration in the depth of breathing with
  regular periods of apnea)
• Noisy chest or respirations with the accumulation
  of fluid in the lungs or in the posterior pharynx
• Decreased, weak, or slow pulse rate and drop in
  blood pressure

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Nursing Care

• Shift from the curative technological approach to
  providing care that enables the child to move
  toward death, accessing own inner resources for
  healing
• Help the child restore mental, physical, and
  spiritual balance to attain peace at the time of
  death
• Be present
• Use touch
• Give family choices
• Assess the situation and determine the proper
  environment

25
Care of the Dying Child

• Care of the dying child includes holistic nursing
  interventions that address the physical,
  emotional, and spiritual aspects
• Palliative carefollows a medical model
• Hospice careholistic approach focuses on
  quality of life
• End-of-life careend of life is about 6 months
  away peaceful death without pain

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Holistic Care for the Dying Child

• Comfort measures
• Emotional support
• Spiritual interventions
• Complementary care
• See Critical Nursing Action, Holistic Care for
  the Dying Child and Clinical Alert, Principles of
  Pain Medication Administration

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After the Child Dies

• Prepare the family about the childs appearance
  and description of the death
• Give family the choice of being with the child
  alone or with the nurse
• Handle the childs belongings gently and with
  respect

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Grieving
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Somatic Grief Response

• Somatic grief response can be described as
• Somatic distress that includes feelings of
  tightness in the throat or chest, sighing
• Weakness or shortness of breath
• Preoccupation with the image of the deceased
  (e.g., hearing or seeing the person who died)
• Inability to focus on anything other than the
  loved one who died
• Emotionally distancing self from others
• Feelings of guilt
• Feeling responsible for the loved ones death
• Searching for what could have been done
  differently, thinking in terms of if only had
  done . . .
• Hostile reactions that include feelings and
  expressions of anger
• Inability  to complete daily tasks

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Grief Theories

• Kübler-Ross stages of grief
• Denial and isolation (numbness and disbelief)
• Anger (awareness about the reality)
• Bargaining (with self or God)
• Depression (profound sadness)
• Acceptance (look for meaning)

31
Grief Theories

• Miles and Perry stages of grief
• Phase 1state of numbness and shock
• Phase 2period of intense grief
• Phase 3period of reorganization

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Grief Theories

• Epperson theory of grieving
• Grief associated with sudden death or
  catastrophic loss
• High anxietyemotional upheaval
• Denialprotective emotional reaction
• Angerusually diffuse type of anger (lashes out)
• Remorsefeelings of guilt and sorrow
• Griefperiod of overwhelming sadness
• Reconciliationend-point to the family crisis
  (moving on)

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Coping Patterns

• Grief reactions can differ
• Recognize exhibited coping patterns and find ways
  to support family
• Listen, sit silently, refer to pastoral care,
  offer spiritual care
• If destructive behavior to self or others, call
  physician or professional counselor
• Do not alter coping pattern completely
• Pathological grief
• Subtle indicators
• Suicidal or homicidal ideation
• Violent behavior
• Grief influenced by drugs and alcohol
• Extreme denial

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Saying Good-Bye

• Saying good-bye should not be rushed
• Call the child by his or her name
• What to say
• Im sorry
• This must be terribly hard for you
• Is there anyone I can call for you?
• Would you like me to stay with you for a while?

35
Sibling Says Good-Bye

• Visits from the sibling are important
• Include sibling in grieving process
• Give them the opportunity to say good-bye

36
Related Aspects

• Remembrance packet
• Organ tissue donation
• Funerals

37
Caring for the Professional Caregiver

• Feelings of helplessness about not being able to
  alter the outcome
• Burnout (state of physical, emotional, and mental
  exhaustion)
• Compassion fatigue syndrome (helplessness,
  confusion, and isolation)
• Moral distress (acting in a manner contrary to
  personal or profession values)
• Pay attention to personal needs