Transcript Chapter 24

Maternal-Child Nursing Care
Optimizing Outcomes for Mothers, Children, & Families
Susan Ward
Shelton Hisley
Chapter 35
Caring for the Child with a Chronic
Condition or the Dying Child
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 child’s death
Examples of Chronic Conditions
 Brain—cerebral palsy or a seizure disorder
 Heart—congenital or acquired heart disease
 Lungs—cystic fibrosis, bronchopulmonary dysplasia (BPD), or
asthma
 Muscular or skeletal—muscular dystrophy or skeletal malformations
 Abdominal organs—kidneys (renal failure), liver (cirrhosis), or
intestine (short bowel syndrome)
 Skin—eczema, dermatitis, or conditions such as Lyme disease that
can cause chronic arthritis
 Psychological—depression, bipolar disorder, or autism
 Cognitive—Down syndrome, developmental or learning disabilities
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.
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
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
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
Impact of the Chronic
Condition on the Preschooler
 Impact
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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
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
Impact of the Chronic
Condition on the Adolescent
 Impact
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Where to place the adolescent—pediatric 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
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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
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
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
The Child Living with a
Chronic 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
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
Important Aspects when Caring
for a Child with a Chronic
Condition
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)
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 child’s growth
 Treatment protocols associated with chemotherapeutic agents may hinder
growth
 May see delayed development as well
 Nursing care
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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
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
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
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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
The Dying Child
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 thinker—illness or injury may
be viewed as punishment for bad
behaviors
 Concrete thinker—death 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
Before the Child Dies
 Complete the institution’s 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
Recognition of Physical
Signs of Impending Death
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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
Cheyne–Stokes 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
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
Care of the Dying Child
 Care of the dying child includes holistic nursing
interventions that address the physical,
emotional, and spiritual aspects
 Palliative care—follows a medical model
 Hospice care—holistic approach; focuses on quality of
life
 End-of-life care—end of life is about 6 months away;
peaceful death without pain
Holistic Care for the Dying Child
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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
After the Child Dies
 Prepare the family about the child’s
appearance and description of the death
 Give family the choice of being with the
child alone or with the nurse
 Handle the child’s belongings gently and
with respect
Grieving
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 one’s 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
Grief Theories
 Kübler-Ross stages of grief
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Denial and isolation (numbness and disbelief)
Anger (awareness about the reality)
Bargaining (with self or God)
Depression (profound sadness)
Acceptance (look for meaning)
Grief Theories
 Miles and Perry stages of grief
 Phase 1—state of numbness and shock
 Phase 2—period of intense grief
 Phase 3—period of reorganization
Grief Theories
 Epperson theory of grieving
 Grief associated with sudden death or catastrophic
loss
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High anxiety—emotional upheaval
Denial—protective emotional reaction
Anger—usually diffuse type of anger (lashes out)
Remorse—feelings of guilt and sorrow
Grief—period of overwhelming sadness
Reconciliation—end-point to the family crisis (moving on)
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
Saying Good-Bye
 Saying good-bye should not be rushed
 Call the child by his or her name
 What to say
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“I’m 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?”
Sibling Says Good-Bye
 Visits from the sibling are important
 Include sibling in grieving process
 Give them the opportunity to say good-bye
Related Aspects
 Remembrance packet
 Organ tissue donation
 Funerals
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