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
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
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
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
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
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
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
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
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
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
“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