PEDIATRIC NURSING

Nursing Care of Children with Chronic Illness or Terminal Conditions

Comprehensive Review of Family-Centered Support, Developmental Considerations, and End-of-Life Care

26M Additional Physician Visits Annually
5M Additional Hospital Days per Year
3-∞ Months to Lifetime Duration
FOUNDATION

Understanding Chronic Illness in Pediatrics

KEY DEFINITION

Chronic Illness: Children who have or are at increased risk for chronic physical, behavioral, developmental, or emotional conditions and who require health and health-related services beyond that required for children in the general population.

Healthy People 2030 Definition: A health condition that lasts three months to a lifetime.

Critical Concept: This is a broad conceptual lecture. It is impossible to cover every specific chronic condition and terminal illness. Instead, focus on understanding how to support patients and families through comprehensive, family-centered care principles that apply across conditions.

The Evolution of Life Expectancy

Advances in medical care have dramatically increased life expectancy for children with conditions that were once uniformly fatal in early childhood. Understanding how we arrived at this point is essential for appreciating the complexity of modern pediatric chronic illness care.

Condition Historical Life Expectancy Current Life Expectancy Key Advances
Cystic Fibrosis ~5 years 50+ years Advanced therapies, better pulmonary care
Spina Bifida 90% died in infancy 90% survive with somewhat normal life expectancy Surgical interventions, comprehensive management
Congenital Heart Defects Rarely survived to adulthood Now reaching adult care Surgical repair, cardiac catheterization

Why Are Children Living Longer?

Transition to Adult Care: Children with congenital conditions who now survive to adulthood present a unique challenge. Adult healthcare providers may not have training in pediatric-origin conditions. For example, pediatric cardiac nurses are now working in adult facilities to care for adults with congenital heart defects - a specialty that commands premium compensation due to its rarity in adult care.
EPIDEMIOLOGY

Statistics and Scope

KEY STATISTICS

Critical Shift: Chronic illnesses have now surpassed acute illnesses as the primary health concern in pediatrics.

Most Common Childhood Conditions Causing Disability

1. Asthma

Number one cause of disability in children

2. Speech/Sensory Impairment

Includes autism, Asperger's, ADHD, CP with speech delays

3. Mental/Nervous System Disorders

Epilepsy, cerebral palsy, developmental delays

Healthcare Utilization Impact

Vulnerable Population: Children with chronic illness constitute a vulnerable population requiring heightened awareness and protective interventions. Nurses must screen for abuse, educational barriers, and social challenges in addition to medical management.
FAMILY-CENTERED CARE

Family Impact and Support Needs

FOUNDATIONAL PRINCIPLE

Family as the Unit of Care: In pediatrics, we always consider the entire family unit. The family is the constant in the child's life and ultimately provides the support and care necessary for the child. Our patients are children, but we must consider and support the entire family system.

Major Areas of Family Impact

Practical Burdens

  • Additional tasks and responsibilities: Extra medications, injections, equipment management, frequent appointments
  • Increased caretaking needs: Varies by condition but always adds complexity to daily routines
  • Educational service needs: IEPs (Individualized Education Plans), 504 plans requiring yearly renewal and advocacy
  • Time management: Coordinating multiple appointments, therapies, school meetings

Emotional/Financial Burdens

  • Financial strain: Insurance gaps, copays, equipment costs, potential caps requiring out-of-pocket thousands
  • Lost workdays: Parents missing work for appointments and illness management
  • Uncertainty about future: Questions about lifespan, independence, quality of life
  • Grieving process: Loss of the "typical" child experience and developmental milestones

Clinical Example: Type 1 Diabetes

ADDITIONAL CARETAKING NEEDS

Daily Management Requirements:

  • Insulin medication via pump or injection
  • Continuous glucose monitoring
  • Pre-meal carbohydrate counting and insulin bolus calculation
  • Teaching child age-appropriate self-management skills
  • School coordination for meal and medication timing
  • Emergency preparedness for hypo/hyperglycemia
Every Condition is Different: The specific caretaking needs vary tremendously by condition. As nurses, we assess what specific supports each family needs rather than making assumptions.

Social and Community Impact

Stigmatizing Reactions from Community

Families may experience judgment or stigmatization, particularly with conditions affecting behavior or appearance:

Social Isolation

Nursing Role: As nurses, we must provide emotional support for these challenges and connect families with resources. Understanding and validating these struggles - without judgment - is essential to effective family-centered care.
FAMILY DYNAMICS

Impact on Different Family Members

Impact on the Child with Chronic Illness

Impact on Parents/Caregivers

Vicious Cycle Alert: Medical costs increase while income decreases due to missed work, creating a potentially devastating financial spiral. Nurses must assess for financial hardship and connect families with social work resources early.

Impact on Siblings

Siblings of children with chronic illness face unique challenges that require attention and support:

Common Sibling Reactions

  • Jealousy and resentment toward the child receiving extra attention
  • Guilt for being healthy or having negative feelings
  • Anger at the disruption to family life
  • Fear about their own health or their sibling's condition
  • Parentification (taking on adult responsibilities prematurely)

Secondary Effects

  • Missing school activities due to family obligations
  • Lost opportunities (sports, extracurriculars, social events)
  • Decreased parental attention and one-on-one time
  • Emotional burden of family stress
  • Pressure to be "perfect" to not add to family stress
Critical Nursing Stance - Non-Judgmental Support: Jealousy, resentment, and anger from siblings are NORMAL and EXPECTED reactions. As nurses, we must:
  • NOT scold or judge siblings for these feelings
  • Validate their emotions as natural responses to stress
  • Encourage expression of feelings in age-appropriate ways
  • Ensure they receive attention and acknowledgment of their needs
  • Connect with Child Life for sibling support programs
RESOURCE HIGHLIGHT

Recommended Reading

Textbook Reference: Box 19.4 (Family Development Considerations) and the preceding page on approach versus avoidance coping behaviors provide excellent frameworks for understanding family dynamics and coping patterns.

CARE DELIVERY MODELS

Trends in Pediatric Chronic Illness Care

Developmental Focus

CRITICAL PRINCIPLE

Meet the Child Where They Are: Approach developmental tasks based on where the child is functionally, not chronologically. Children with chronic illness often have developmental delays - we must assess actual developmental level and provide age-appropriate care based on that assessment, not the child's chronological age.

Clinical Example: Developmental Assessment

FUNCTIONAL VS. CHRONOLOGICAL AGE

Scenario: A 12-year-old with developmental delays has been assessed and functions cognitively at a 4-year-old level.

Incorrect Approach

  • Expect developmental milestones typical for a 12-year-old (Erikson's "Industry vs. Inferiority")
  • Use abstract reasoning and complex explanations
  • Assume independence in self-care tasks

Correct Approach

  • Communicate at a 4-year-old level using concrete, simple language
  • Expect developmental stage of "Initiative vs. Guilt"
  • Provide age-appropriate (to developmental age) activities and expectations
  • Use play therapy and concrete examples for teaching
We must assess where each child is individually and meet them at their actual developmental level, not their chronological age.
COGNITIVE DEVELOPMENT & HEALTH UNDERSTANDING (PIAGET)
Age/Stage Cognitive Stage (Piaget) Understanding of Illness Teaching Approach Examples
Infants
(0-2 years)		 Sensorimotor
Learning through senses and motor activity 		• No cognitive understanding of illness
• Responds to discomfort and separation
• Cannot connect cause and effect
• Experiences only the present moment 		• Maintain consistent caregivers
• Minimize painful procedures
• Provide comfort measures
• Keep parents present
• Use distraction during procedures 		Infant cries from pain but has no concept of "diabetes" or why blood glucose checks are needed
Toddlers
(2-3 years)		 Preoperational (Early)
Egocentric, magical thinking begins 		• Illness is punishment for bad behavior
• "I got sick because I was bad"
• Cannot understand invisible processes
• Concrete, here-and-now focus
• May think they caused illness 		• Simple, concrete explanations
• Reassure NOT their fault
• Use play to teach
• Allow control where possible
• Maintain routines 		"Your body needs medicine to feel better. You didn't do anything wrong." Use dolls to show procedures
Preschool
(3-6 years)		 Preoperational
Magical thinking, limited logic 		• Illness from external, concrete causes
• "Germs" as tiny monsters
• Proximity causes illness (contagion)
• Their thoughts/wishes can cause events
• Body is bag of parts 		• Use simple cause-effect
• Drawings and visual aids
• Medical play with dolls
• Short explanations only
• Correct misconceptions about blame 		"Germs are tiny things that make us sick. The medicine fights the germs." Show picture of lungs for asthma teaching
Early School-Age
(7-10 years)		 Concrete Operational
Logical thinking about concrete situations 		• Multiple causes of illness recognized
• Understands germs are real
• Can grasp simple body processes
• Still somewhat concrete
• Limited understanding of prevention 		• Detailed explanations with visuals
• Simple diagrams of body systems
• Allow participation in care
• Explain cause-effect relationships
• Answer questions factually 		"Your pancreas can't make insulin, so your blood sugar gets too high. The insulin we give you does the job your pancreas should do."
Late School-Age
(11-12 years)		 Concrete Operational
(Transitioning)
More advanced logic, beginning abstractions 		• Understands illness as physiological
• Can connect symptoms to disease
• Grasps organ systems
• Beginning to understand long-term
• Can learn disease management 		• Detailed body system teaching
• Include in care planning
• Teach self-management skills
• Use medical terminology
• Encourage questions 		Teach diabetic child about carb counting, insulin-to-carb ratios, and how exercise affects blood sugar
Adolescents
(13-18 years)		 Formal Operational
Abstract thinking, hypothetical reasoning 		• Adult understanding of disease
• Grasps abstract concepts
• Understands statistics and prognosis
• Can project into future
• Capable of complex self-management
• May struggle with adherence (denial) 		• Treat as partner in care
• Discuss long-term implications
• Address adherence barriers
• Provide privacy for questions
• Support autonomy while ensuring safety
• Honest discussions about prognosis 		Discuss with teen CF patient: "Let's talk about how your treatments now affect lung function 10 years from now. What are your concerns about college?"
CRITICAL APPLICATION: These are guidelines based on typical development. Always assess EACH child's actual cognitive level - chronic illness can delay development. A 10-year-old with developmental delays may have preschool-level understanding and need teaching appropriate for that level, not their chronological age. Assess, don't assume.

Family-Centered Care Philosophy

FOUNDATIONAL PHILOSOPHY

The Family is the Constant in the Child's Life

This principle repeated throughout pediatrics bears emphasizing again: The family becomes the expert in the child's care. They know the subtle cues, the individual needs, the specific tolerances and preferences that make care most effective.

Clinical Example: Family Expertise

PARTNERING WITH FAMILIES

Scenario: Caring for an infant with multiple congenital conditions including suspected blindness from shaken baby syndrome.

Initial Assessment

The child was nonverbal and had limited movement. Medical team believed child was blind and couldn't track visually.

Parent Insight

Parents, who cared for the child daily, noticed subtle responses and could interpret the smallest movements as communication.

Nursing Discovery

After several days of care, nurse observed child tracking movement around crib. Initially suspected auditory tracking, but after moving silently, confirmed visual tracking was present - vision was returning.

Key Lessons:
  • Listen to parents - they know their child best
  • Look for non-obvious cues that indicate bonding and communication
  • Be a partner in care, not just a provider of care
  • When parents suggest modifications to care that don't violate policy, honor their expertise

Practical Application of Family-Centered Care

Normalization

Goal: Create as normal a family life as possible despite the chronic illness.

Strategies for Normalization

Balance Point: Sometimes families fall on either extreme of the pendulum:
  • Overprotective: Don't think child can accomplish things they're actually capable of
  • Unrealistic expectations: Push for goals beyond child's capabilities

Nursing Role: Help families find the balance - encourage growth and independence while maintaining safety and realistic expectations based on the child's actual abilities.

Examples: Supporting Independence

NORMALIZATION IN PRACTICE

Child with G-Tube

Question: Should the child sit around dinner table with family during meals even though receiving tube feeding?

Answer: Absolutely yes! The child should participate in family mealtime to maintain social connection and family routine. They remain part of the family experience even if eating method differs.

Child with Diabetes

Question: Can a diabetic child play sports?

Answer: Yes! With proper management, blood sugar monitoring, and adjustments to insulin/food intake, children with diabetes can fully participate in sports and physical activities.

Child with Asthma

Question: Can a child with asthma participate in physical activities?

Answer: Depends on triggers. If excessive exercise is a trigger, modify activities. But many children with asthma can participate with proper medication management and activity modification. Focus on what they CAN do.

Our job is to help families identify what the child CAN do and support participation in normal childhood activities with appropriate modifications.

Home Care

Many children with chronic illness can be cared for at home with appropriate training and support:

Parent Training for Home Care

Home Nursing Services

Mainstreaming

EDUCATIONAL INCLUSION

Mainstreaming: Integration of children with physical or emotional impairments into general education classrooms rather than segregated special education settings.

Historical Context: In the past, children with impairments were routinely separated from the general school population. Modern practice emphasizes inclusion whenever possible.

Tools for Mainstreaming Success

Benefits of Mainstreaming: Children who can be mainstreamed show better developmental and social outcomes. Encourage mainstreaming whenever the child's assessment indicates it's appropriate. It promotes normalization and provides vital peer interaction.

Early Intervention

Principle: The earlier we identify and intervene for developmental or health concerns, the better the long-term outcomes.

Early Intervention Programs

AUTISM EXAMPLE

Critical Window: Autism diagnosis and intervention before age 3 leads to significantly better outcomes throughout life. This underscores the importance of early screening and immediate intervention when concerns are identified.

Managed Care and Resources

Financial Considerations

Alternative Educational and Care Settings

UCPS (United Cerebral Palsy Schools)

County-funded public schools dedicated to enriching children of all abilities. Focus on inclusive education with specialized support.

PE Pac (Prescribed Pediatric Extended Care)

School/daycare specifically for children with chronic conditions. Includes both teachers for education AND therapists for medical/physical needs. Allows cognitively normal children to learn while receiving necessary medical support.

Example: PE Pac Setting

INTEGRATED CARE AND EDUCATION

Scenario: Child is cognitively typical but has significant physical limitations requiring medical support (wheelchair, G-tube, frequent positioning changes).

Challenge: Traditional school may not have resources for medical needs, but child can learn at grade level.

Solution: PE Pac setting where:

  • Teachers provide grade-appropriate curriculum
  • Therapists available in the building for physical, occupational, speech therapy
  • Medical needs addressed without interrupting education
  • Child receives both education AND medical support in integrated setting
These specialized programs allow children to maximize their potential by addressing both educational and medical needs simultaneously.
CULTURAL COMPETENCE

Cultural and Religious Considerations

FOUNDATIONAL PRINCIPLE

Cultural beliefs and values influence how families react to and manage chronic illness. As nurses, we must assess these influences both directly (through conversation) and indirectly (through observation) to provide culturally sensitive, family-centered care.

Key Areas for Cultural Assessment

  1. Perceptions of Cause of Illness

    Families may have cultural or religious explanations for why the illness occurred. These beliefs may or may not align with medical understanding.

    Example: Type 1 Diabetes Misconception

    ADDRESSING MISPERCEPTIONS

    Common Misconception: "You ate too much sugar - that's why you're sick."

    Reality: Type 1 diabetes is an autoimmune condition NOT caused by eating sugar.

    Impact: This misperception can cause emotional distress to the child who feels blamed for their condition.

    Nursing Response: Gently educate about actual pathophysiology while being sensitive to why the misconception exists. Emphasize that nothing the child did caused the condition.

  2. Understanding of What the Illness Does to the Child

    Families may not fully comprehend:

    • The severity of the condition
    • How the condition affects the body
    • What might be possible or not possible for the child
    • Long-term implications and trajectory
  3. Perception of Seriousness and Chronicity

    Families may not immediately grasp:

    • That condition is NOT a quick fix
    • That treatment is required daily or for lifetime
    • The permanence of the condition

    Example: Diabetes Education Misunderstanding

    CLARIFYING CHRONICITY

    Scenario: Outpatient diabetes teaching session

    Parent Statement: "So when they get this insulin shot, they'll be okay, right?"

    Misunderstanding: Parent thinks insulin is one-time treatment that will cure diabetes

    Reality: Insulin must be replaced multiple times daily for life

    Nursing Response: Carefully explain pathophysiology, explain why body no longer makes insulin, and clarify that insulin replacement is lifelong. May need to repeat education multiple times with reinforcement due to stress and complexity of information.

  4. Types of Treatment Families Would Like to Use

    Families may wish to incorporate:

    • Herbal remedies or supplements
    • Prayer or spiritual practices
    • Alternative or complementary therapies
    • Cultural healing practices
    Integrating Family Preferences: As long as complementary practices are safe and don't interfere with prescribed treatment, we should support families in using them ALONGSIDE medical treatment. This:
    • Gives families sense of control and participation
    • Respects cultural/spiritual beliefs
    • Improves adherence to medical treatment
    • Strengthens therapeutic relationship
    Always verify safety: Check for drug interactions with herbal supplements and ensure practices don't contradict evidence-based care.
  5. Results Expected from Preferred Treatments

    Help families maintain realistic expectations through education and support.

    Examples of Managing Expectations

    • Epilepsy: Medications help control seizures but don't always eliminate them completely. Need to monitor levels and may still have breakthrough seizures requiring dosage adjustment.
    • Tetralogy of Fallot: Palliative surgery helps but child may still have "tet spells" requiring knee-to-chest positioning until full repair.
    • Asthma: Controller medications reduce symptoms and attacks but may not eliminate all respiratory issues. Need action plan for exacerbations.

Language Barriers and Communication

CRITICAL REQUIREMENT: When parents don't speak English or are being informed of their child's diagnosis and treatment, we MUST use professional interpreter services.

NEVER use:

  • Children to translate medical information
  • Family members (potential for bias or censoring)
  • Friends or untrained staff

Communication Accommodations

Assessment Throughout Care

Initial Assessment: Cultural and religious background assessed during admission/intake

Ongoing Assessment: Continue assessing as relationship develops:

Non-Judgmental Stance: Approach cultural differences with curiosity and respect, not judgment. Our goal is to understand the family's perspective and work WITH their beliefs while ensuring safe, effective care.
PSYCHOSOCIAL SUPPORT

The Child's Coping and Adjustment

FOUNDATIONAL CONCEPT

Developmental Regression: Children - even those without chronic illness - commonly regress in development when hospitalized or stressed. This is NORMAL and EXPECTED. Children with chronic illness may show regression with diagnosis, exacerbations, or hospitalizations.

Clinical Example: Regression During Hospitalization

NORMAL STRESS RESPONSE

Scenario: Toddler admitted to hospital with RSV. Child had recently transitioned from bottle to sippy cup.

Parent Frustration

"We just got him off the bottle and now he wants it again! We can't let him go backward!"

Nurse Response

Educate about regression: "This is completely normal. Children regress when they're stressed or sick. The hospital environment is stressful, and your child is coping by going back to something familiar and comforting."

Reassure about progression: "I promise you, once he's home and feeling better, he'll go back to the sippy cup. We should allow him to use the bottle right now because it provides comfort during a difficult time."

Encourage gradual return: "When you get home, slowly transition him back to the sippy cup. This temporary regression doesn't erase the progress you've made."

Nursing Principle: Allow for age-appropriate regression during stressful times. Fighting against it increases stress. Support the child where they are and gently guide them back to their previous level when stress decreases.

Nursing Assessment of Child's Coping

Observe and Assess

Explore Child's Understanding

Self-Blame is Common: Young children may internalize illness as punishment or believe they caused it by being "bad." Always clarify that they did nothing wrong. The illness is not their fault.

Supporting the Child's Coping

  1. Provide Support While Child Learns to Cope with Feelings
    • Normalize emotional reactions
    • Provide age-appropriate outlets for emotions (play therapy, art, journaling)
    • Validate feelings without trying to "fix" them immediately
    • Be present and available
  2. Encourage Child to Verbalize Concerns

    Critical: Encourage the CHILD to verbalize, rather than allowing others (parents) to speak for them.

    Technique: Redirecting to the Child

    Scenario: Parent answers questions directed at school-age child

    Parent: "Oh, he's feeling much better today!"

    Nurse (to child): "Thank you, Mom. I heard from your mom, but I'd really like to hear from YOU. How are YOU feeling today?"

    Result: Child learns their voice matters and parents learn to allow child to speak for themselves

  3. Assess and Address Self-Blame

    Directly address the common fear/belief that they caused their illness:

    • "You did nothing wrong to get this illness"
    • "This is not your fault"
    • "Many children have this condition - it's not because of anything you did"
    • "Let's talk about what actually causes this condition"

Coping Patterns in Children

Coping Pattern Behaviors Nursing Response
Developing Confidence & Optimism ✓ • Actively participates in care
• Asks questions about condition
• Sets goals for self-management
• Maintains social connections 		GOAL PATTERN
Reinforce and support. Praise efforts. Continue education and skill-building.
Feeling Different or Withdrawn ✗ • Social isolation
• Avoiding peers
• Refusing to discuss illness
• Self-imposed limitations 		NEEDS INTERVENTION
Identify barriers. Connect with peer support. Encourage participation in activities. Address fears.
Irritable and Moody ✗ • Emotional lability
• Anger outbursts
• Opposition to treatment
• Acting out 		NEEDS INTERVENTION
Assess for "burnout". Provide emotional support. Consider counseling. Address underlying frustrations.
Complies with Treatment ✓ • Follows regimen consistently
• Takes medications as prescribed
• Attends appointments
• Practices self-care 		GOAL PATTERN
Reinforce positive behaviors. Assess for true acceptance vs. passive compliance.
Seeks Support ✓ • Asks for help when needed
• Participates in support groups
• Communicates concerns
• Accepts assistance 		GOAL PATTERN
Facilitate connections to appropriate resources. Validate that asking for help is strength.
DISEASE-SPECIFIC BURNOUT

Diabetes Burnout / Diabetes Fatigue

Now an official diagnosis code recognized by healthcare providers.

Presentation: Child becomes so tired of managing chronic disease that they:

  • Stop acknowledging they have the condition
  • Refuse to take insulin or check blood sugars
  • Show anger, resentment, or extreme frustration
  • Act out by deliberately not following treatment plan

Nursing Response: Recognize this as a real phenomenon requiring psychological support, not just medical management. May need referral to diabetes counselor, support groups, or mental health professional.

Example: Social Isolation - Celiac Disease

ADDRESSING WITHDRAWAL

Pattern: Child with celiac disease stops going out with friends

Reason: "All my friends go out for pizza and I can't eat what they eat. I feel different."

Nursing Interventions

  • Normalize feelings: "It makes sense that you feel different. Many kids with celiac feel this way."
  • Problem-solve together: "Let's think of ways you can still join your friends. Can you eat before and just go to hang out? Are there restaurants with gluten-free options?"
  • Educate friends: "Would it help to explain to your friends about celiac so they understand it's not a choice?"
  • Connect with peers: "Would you be interested in meeting other kids who have celiac disease?"
  • Focus on abilities: "What activities CAN you fully participate in with your friends?"
Never minimize the child's feelings. Social connections are critically important in childhood development. Work WITH the child to find solutions that allow continued peer relationships.

Resources for Child Support

Know Your Resources: Part of effective nursing care is knowing what support services, camps, and groups exist for different conditions. Keep resource lists updated and share them proactively with families.
FAMILY ROUTINES

Normalization: Practical Implementation

CORE PRINCIPLE

Normalization: Efforts to create as normal a family life as possible within the context of chronic illness. Focus on what the child CAN do and their potential, rather than limitations.

Nursing Assessment for Normalization

Assess Family's Daily Routine

Essential Questions:

Common Problem: Families often make assumptions about what child can NO LONGER do without exploring whether those activities are truly impossible. As nurses, we help families identify activities that ARE possible with modifications.

Key Principles of Normalization

  1. Apply Same Family Rules to Everybody
    CRITICAL FOR SIBLING RELATIONSHIPS

    The Problem: Parents may feel guilty about child's illness and unconsciously allow that child to "get away with" behaviors that wouldn't be acceptable from siblings.

    Why This Happens

    • Guilt that child has illness
    • Desire to compensate for child's suffering
    • Fear of adding stress to already-stressed child
    • Exhaustion leading to inconsistent discipline

    Why It's Harmful

    • Creates resentment in siblings who see unfair treatment
    • Teaches child to use illness to manipulate
    • Prevents development of age-appropriate responsibility
    • Damages family dynamics and relationships

    Nursing Intervention

    Gently help parents see that:

    • Consistent rules benefit ALL children
    • Child with illness needs structure just like siblings
    • Age-appropriate expectations promote healthy development
    • Fair treatment reduces sibling conflict
  2. Don't Let Child Remain in Bedroom All Day

    Encourage Participation in Family Life:

    • Sit at dinner table even if receiving G-tube feeding
    • Participate in family game nights or movie nights
    • Be present for family discussions and activities
    • Maintain connections with siblings and parents

    Example: G-Tube Feeding at Dinner

    SOCIAL PARTICIPATION

    Scenario: Child receives nutrition via G-tube and doesn't eat orally

    Question: Should child still sit with family during meals?

    Answer: ABSOLUTELY YES.

    Why This Matters

    • Maintains family bonding and routine
    • Keeps child socially engaged
    • Prevents isolation and withdrawal
    • Normalizes their presence in family activities
    • Allows participation in conversation and connection
  3. Focus on Normal Aspects of Appearance and Capabilities

    Assessment Questions:

    • What activities is your child interested in?
    • What are their strengths?
    • What CAN they do that brings them joy?
    • What modifications might allow participation in desired activities?

    Examples of Focus on Capabilities

    Physical Activities

    If triggers exist:

    • Asthma with exercise trigger → Lower-intensity activities, swimming, yoga
    • Physical limitations → Adapted sports, wheelchair sports

    If NO contraindications:

    • Diabetes → Can fully participate with monitoring and snacks
    • Celiac → Can do all physical activities

    Social/Creative Activities

    • Clubs: Drama, debate, art, music, gaming
    • Non-physical sports roles: Team manager, scorekeeper
    • Creative pursuits: Art, writing, music
    • Technology-based activities: Coding, digital art, robotics
    • Volunteer work: Age-appropriate community service
    Guiding Principle: If there are legitimate limitations due to the condition, help family and child identify alternative activities that ARE possible. Focus energy on capabilities, not limitations.
  4. Encourage Staying Connected with Friends
    HIGH PRIORITY INTERVENTION
    Social withdrawal and isolation significantly impact emotional health and development. We MUST actively work to prevent this.

    Strategies to Maintain Social Connections

    • Regular school attendance whenever medically possible
    • Video calls/texting with friends during hospitalizations or homebound periods
    • Invite friends to visit at home (when appropriate)
    • Participate in social activities with modifications as needed
    • Educate friends about condition (with child's permission) to reduce stigma
    • Connect with other children who have similar conditions

Activities and Independence

Sports Participation Guidelines

Condition Can Participate? Considerations
Type 1 Diabetes ✓ YES Monitor blood sugar before/during/after. Have fast-acting carbs available. May need insulin adjustment.
Asthma (Exercise Trigger) ⚠ MODIFIED Pre-treat with bronchodilator. Choose lower-intensity or interval activities. Swimming often well-tolerated.
Asthma (Other Triggers) ✓ YES Full participation with appropriate medication management. Avoid specific triggers (pollen, cold air).
Celiac Disease ✓ YES No physical limitations. Only dietary restrictions. Bring own snacks to team events.
Epilepsy (Well-Controlled) ✓ YES May need to avoid certain activities (swimming alone). Teammates should know seizure action plan.
CRITICAL ASSESSMENT

Don't Make Assumptions: Always ask parents what activities they think are now impossible. Often, families have made assumptions about restrictions that don't actually exist. Educate about what IS possible rather than focusing on limitations.

Promoting Age-Appropriate Independence

Encouraging Self-Care Skills

Balance Needed: Some parents are overprotective and don't allow age-appropriate independence. Others may push for goals beyond child's capabilities. Help families find the realistic balance that promotes maximum independence while maintaining safety.

Safety Considerations for Active Participation

Protective Equipment

For children with vision impairment or other special needs participating in sports:

FAMILY SUPPORT

Supporting Family Coping

TEXTBOOK REFERENCE

Essential Reading: Box 19.4 covers Family Development Considerations, and the preceding page discusses Approach vs. Avoidance Coping Behaviors - critical frameworks for understanding how families adapt to chronic illness.

Understanding Coping Styles

Approach Coping (Adaptive)

Avoidance Coping (Maladaptive)

COPING MECHANISMS: ADAPTIVE VS MALADAPTIVE
Aspect Adaptive (Approach) Coping Maladaptive (Avoidance) Coping Nursing Response
Information Seeking • Actively asks questions
• Researches condition
• Seeks second opinions
• Engages with healthcare team
• Attends appointments consistently 		• Refuses to discuss diagnosis
• Avoids asking questions
• Misses appointments
• Ignores educational materials
• Denies need for information 		• Reinforce information-seeking
• Gently explore barriers to engagement
• Provide resources at family's pace
• Address fears about information
Emotional Expression • Openly expresses feelings
• Shares concerns with team
• Allows self to grieve
• Seeks counseling if needed
• Validates own emotions 		• Suppresses all emotions
• "I'm fine" when clearly not
• Refuses emotional support
• Denies impact of diagnosis
• Presents overly stoic facade 		• Validate all emotions as normal
• Create safe space for expression
• Normalize grief process
• Offer counseling referral
• Don't force disclosure
Support Systems • Reaches out to family/friends
• Joins support groups
• Accepts offers of help
• Maintains relationships
• Builds new connections 		• Isolates from others
• Refuses help
• Withdraws from relationships
• "We can handle this alone"
• Pushes supporters away 		• Encourage gradual connection
• Provide support group info
• Identify isolation as concern
• Explore barriers to accepting help
• Connect with social work
Problem-Solving • Identifies challenges proactively
• Develops action plans
• Brainstorms solutions
• Adapts when needed
• Asks for guidance 		• Feels helpless/hopeless
• "There's nothing we can do"
• Gives up easily
• Waits for others to solve problems
• Catastrophizes obstacles 		• Break problems into small steps
• Celebrate small successes
• Teach problem-solving skills
• Provide concrete resources
• Build sense of agency
Care Participation • Learns care skills eagerly
• Practices techniques
• Follows treatment plans
• Communicates changes to team
• Partners in decision-making 		• Refuses to learn care
• Non-adherence to treatment
• Delegates all care to others
• Ignores provider recommendations
• Blames healthcare team 		• Assess barriers to participation
• Simplify care routines
• Address fear/inadequacy
• Provide repetitive teaching
• Explore reasons for non-adherence
Communication • Open dialogue with partner
• Shares feelings and concerns
• Discusses child's needs
• Coordinates care together
• United decision-making 		• Avoids discussion with partner
• One parent "escapes" (work, etc.)
• Blame and conflict
• Separate decision-making
• Communication breakdown 		• Address immediately
• Family therapy referral
• Facilitate communication
• Provide couple support resources
• Acknowledge relationship strain
Self-Care • Maintains basic self-care
• Gets adequate sleep when possible
• Eats nutritious meals
• Takes breaks when available
• Recognizes own needs 		• Neglects personal health
• Sleep deprivation
• Poor nutrition
• No breaks or respite
• Substance use to cope 		• Emphasize self-care importance
• "You can't pour from empty cup"
• Provide respite resources
• Screen for depression/anxiety
• Monitor for burnout
Future Orientation • Balances present with future
• Makes practical plans
• Maintains hope appropriately
• Adapts expectations
• Focuses on quality of life 		• Either: Complete denial of future challenges
• OR: Catastrophizes everything
• Cannot see past current crisis
• Unrealistic expectations
• Paralyzed by fear 		• Help balance hope with realism
• Address immediate then future
• Normalize uncertainty
• Focus on present when overwhelmed
• Gradual future planning
CRITICAL DISTINCTION: Not all avoidance coping requires immediate intervention. Brief denial can be protective initially. However, patterns that persist, worsen, or interfere with the child's care MUST be addressed. Early identification and intervention prevent entrenchment of maladaptive patterns.

Clinical Example: Identifying Avoidance Behaviors

REQUIRING INTERVENTION

Red Flags from Case Study (Question 2 from Lecture):

Father's Behavior

Pattern: Working more hours and avoiding talking about infant's care

Interpretation: Avoidance coping - escaping through work rather than engaging with reality

Nursing Action: ADDRESS NOW - this pattern will worsen if not addressed early

Mother's Feelings

Pattern: Feelings of inadequacy and lack of support for the baby

Interpretation: Mother feeling unsupported and overwhelmed

Nursing Action: ADDRESS NOW - baby needs engaged caretaker; mother needs support

Sibling's Behavior

Pattern: Anger toward parents and jealousy toward baby

Interpretation: Normal response but needs support and redirection

Nursing Action: ADDRESS NOW - validate feelings but provide coping strategies

Future Concerns

Question: Fears about financially caring for child as adult

Interpretation: Forward-thinking but not urgent

Nursing Action: CAN WAIT - focus on immediate coping first; address future planning later

Priority: Address issues happening in the present that affect immediate care and family functioning. Future planning discussions can come later once family has adapted to initial diagnosis.

Emotional Support Strategies

Critical Understanding: As nurses, we cannot prevent parents from feeling certain emotions. Grief, anger, guilt, fear, and anxiety are NORMAL and EXPECTED responses to chronic illness diagnosis.

Our role is NOT to fix or eliminate these feelings, but to:

  • Validate that feelings are normal
  • Provide safe space for expression
  • Support healthy processing
  • Recognize when feelings cross into pathological grief requiring professional help

The Five Stages of Grief (Kübler-Ross)

Families may cycle through these stages at diagnosis, during exacerbations, or with loss of expected milestones:

  1. Denial

    "This can't be happening." "There must be a mistake." "My child seems fine."

  2. Anger

    "Why my child?" "Why did this happen?" May direct anger at healthcare team, God, each other.

    Do NOT take anger personally. This is part of the grief process, not about you as the nurse. Remain calm, non-defensive, and supportive.
  3. Bargaining

    "If we do everything perfectly, will they get better?" "Maybe if we pray harder..." Seeking control through deals or perfect compliance.

  4. Depression

    Sadness, crying, withdrawal. Grieving the loss of the "typical" child and expected future.

  5. Acceptance

    Coming to terms with reality. Beginning to adapt and plan for life with chronic illness. This doesn't mean happiness, but rather acknowledgment and moving forward.

Non-Linear Process: Families don't move through these stages in order or stay in acceptance. They may cycle back through stages with setbacks, new diagnoses, or developmental transitions.

Specific Support Interventions

Spiritual/Religious Support

CHAPLAIN SERVICES

Available and Underutilized: Hospital chaplains are trained in supporting families through illness and grief. They can provide spiritual support even for non-religious families (existential counseling, grief support, meaning-making). Don't hesitate to offer chaplain consults.

Sibling Support

RESOURCE HIGHLIGHT - CHILD LIFE

Child Life Specialists are AMAZING Resources

Cannot emphasize enough the value of Child Life teams. They provide:

  • Developmentally appropriate explanations for children
  • Play therapy and coping skills
  • Sibling support and education
  • Preparation for procedures
  • Emotional processing through play

Use them frequently! They are experts in supporting children and siblings through medical experiences.

Caregiver Support

Caregiver Burnout is Real: Parents caring for children with chronic illness are at HIGH risk for physical and emotional exhaustion. As nurses, we must actively address this.

Strategies for Supporting Caregivers:

Example: Hospital Family Lounge

PEDIATRIC UNIT RESOURCE

Resource Description: Many pediatric units have designated family spaces (such as 6th floor lobby in example from lecture)

Amenities Provided

  • Coffee station
  • Snacks and beverages
  • Comfortable seating
  • Quiet space away from child's room
  • Sometimes: computers, phones, resources

How to Use This Resource

Proactive nursing: "I know you've been at your child's bedside for hours. Why don't you take a break in our family lounge? We have coffee and snacks, and I'll stay with your child. I'll come get you if anything changes."

Parents often feel guilty leaving their child's side. Give them permission to take breaks and reassure them that their child will be cared for in their absence.
PALLIATIVE & END-OF-LIFE CARE

Family-Centered End-of-Life Care

EXPANDED DEFINITION

Palliative Care: An act of total care of the child's body, mind, and spirit, involving 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.

Key Distinction: Palliative care is often associated ONLY with end-of-life/hospice care, but it actually spans from diagnosis through end of life and can be provided alongside curative treatments.

CRITICAL CONCEPT

Palliative Care ≠ Only End-of-Life Care

Palliative Care Can Include

  • Pain management at any stage of illness
  • Symptom relief during curative treatment
  • Comfort measures alongside disease-directed therapy
  • Psychosocial support throughout illness trajectory
  • Quality of life focus from diagnosis onward

Main Focus: Relief of suffering - whether at diagnosis, during treatment, or at end of life.

Delivery of Palliative Care

Hospital-Based Palliative Care

  • Interdisciplinary team approach
  • Physician, nursing, social work, chaplain, child life
  • Can be provided alongside curative treatment
  • Focus on symptom management and quality of life
  • Family meetings for care planning

Home-Based Care

  • Home hospice services
  • Home palliative care (not just hospice)
  • Both child AND family are the unit of care
  • Nursing visits, equipment provision
  • Allows family environment
Location Flexibility: Hospice and palliative care can be provided in multiple settings - home, hospital, dedicated hospice facility. Choice depends on family preference, medical needs, and available resources.

Ethical Dilemmas in Pediatric Palliative Care

End-of-life decision-making in pediatrics involves unique ethical challenges that differ from adult care:

Common Ethical Considerations

  1. Pain Control vs. Respiratory Depression

    Ethical Dilemma: Terminal Cancer Pain

    REAL CLINICAL SCENARIO

    Situation: Child with terminal cancer affecting nervous system, causing severe nerve pain

    The Dilemma

    Problem: Doses needed to control pain are high enough to potentially cause:

    • Excessive sedation (child sleeps all the time)
    • Respiratory depression
    • Potentially life-threatening side effects

    The Balance

    Considerations:

    • Without adequate pain medication: Child in constant, severe pain
    • With adequate pain medication: Child comfortable but heavily sedated and at risk

    Nursing Perspective

    Walking the line between humanity (controlling pain) and knowledge that high doses could be lethal. This requires:

    • Ethics committee involvement
    • Clear family understanding and consent
    • Physician orders with clear parameters
    • Focus on quality of life vs. length of life
    Reality: Sometimes families must choose between prolonging life with severe suffering or prioritizing comfort even if it may shorten life. These are excruciating decisions that require immense support.
  2. Chemotherapy and Experimental Therapies
    • When does treatment become futile?
    • Long-term effects of aggressive treatment
    • Quality of life during treatment vs. without treatment
    • Are we prolonging life or prolonging death?
    • Clinical trials - hope vs. realistic outcomes
  3. Nutrition and Hydration
    Emotional Challenge: No one wants to feel they are "starving" their loved one. However, near end of life:
    • Body often rejects nutrition naturally
    • Forcing nutrition can cause pain and discomfort
    • Hydration and nutrition needs change as death approaches
    • Focus shifts to comfort, not sustenance

    Nursing Role: Help families understand that decreased intake near end of life is natural and doesn't cause suffering. Forcing nutrition can actually increase discomfort.

  4. Resuscitation Decisions
    MUST Have Conversation BEFORE It's Needed

    Do NOT wait until crisis to discuss DNR/DNI orders. Families need time to:

    • Process information
    • Understand what resuscitation entails
    • Make thoughtful, informed decisions
    • Feel at peace with choices

    Components of Resuscitation Discussion

    • CPR/Compressions: What happens, outcomes in terminal illness
    • Breathing tubes/Intubation: Mechanical ventilation implications
    • Code medications: Epinephrine, other emergency drugs
    • Realistic outcomes: Success rates in context of terminal illness

    Emotional Support: These discussions are heart-wrenching for parents. Provide:

    • Multiple conversations over time (not one-and-done)
    • Chaplain or counselor present if helpful
    • Reassurance that they are loving their child by making these decisions
    • Acknowledgment that decisions can change
    Especially Different in Pediatrics: Watching your own child die goes against every parental instinct. Parents may waver in decisions. Provide non-judgmental support and allow for changing of minds as they process this impossible situation.
  5. Autopsy Decisions

    Sometimes parents disagree about whether to consent to autopsy:

    • One parent may want answers about cause of death
    • Other parent may feel child "has been through enough"
    • Religious or cultural beliefs may impact decision

    When Parents Disagree: If parents cannot agree and there's a legal need (suspicious death, unclear cause), may require court involvement or ethics consultation to resolve.

Ethics Committee Resources

NURSING ROLE IN ETHICAL DILEMMAS

As nurses, we are often the ones who spend the most time with families and may be the first to identify ethical concerns or family distress about decisions. Our role includes:

  • Advocate for patient and family
  • Facilitate communication between family and medical team
  • Identify when ethics consult needed
  • Provide emotional support through decision-making process
  • Ensure family understands options and implications
END-OF-LIFE CARE

The Time of Death and Dying

FAMILY-CENTERED PRINCIPLE

As Pediatric Nurses: We must honor the family's wishes for how they want to spend their final time with their child and handle the death according to their cultural, spiritual, and personal needs.

Special Decisions and Requests

Honoring Family Wishes

No Rush: Unless there are compelling medical reasons (organ donation timing, etc.), there is NO reason to rush the family. Allow them as much time as they need with their child.

Memory-Making and Keepsakes

For Infants and Young Children

RESOURCE - NOW I LAY ME DOWN TO SLEEP

Professional Photography Service: Volunteer photographers who specialize in sensitive, beautiful photographs of dying or deceased infants and children.

  • Available in many hospitals
  • Free service for families
  • Trained in sensitive, compassionate photography
  • Creates lasting memories for grieving families
  • Can be called to hospital or scheduled

Nursing Action: Offer this service proactively. Many families don't know it exists but are grateful when offered. Some families initially decline but later regret not having photos.

Memory Boxes and Services

DNR Orders - Revisited at End of Life

Have Discussion Ahead of Time: DNR discussions should happen proactively, NOT in crisis. Families need time to process and decide without the pressure of emergency.

Components of DNR Discussion

Viewing the Body

After death, families may want extended time with their child:

Practical Considerations

Family Participation in Postmortem Care

Offer, Don't Assume: Some families will want to participate in these activities. Others will not. Offer the opportunity but don't pressure. Follow the family's lead.

Organ Donation

NURSING ROLE CLARIFICATION

Important: Nurses do NOT approach families about organ donation. This is handled by trained organ procurement coordinators.

Our Role:

  • Be liaison between family and transplant organization
  • Call transplant organization if family inquires or if medically appropriate
  • Support family through decision-making process
  • Provide factual information if asked

If Family Inquires: "Let me connect you with our organ donation coordinator who can discuss the options with you and answer all your questions."

Sibling Attendance at Funeral

Whether siblings attend funeral services depends on multiple factors:

Considerations for Attendance

LANGUAGE MATTERS

Talking to Siblings About Death

DO Use Clear Language:

  • "Your brother died"
  • "Her body stopped working"
  • "She's not coming back"

DO NOT Use Confusing Euphemisms:

  • ❌ "Sleeping" - child may fear sleep
  • ❌ "Passed away" - too abstract for young children
  • ❌ "Lost" - child may think baby can be found
  • ❌ "Gone to a better place" - child may feel rejected
Why This Matters: Young children are concrete thinkers. If you say "sleeping," a 3-4 year old will think the person is asleep and will wake up. Use clear, direct, age-appropriate language.

Preparing Siblings for Funeral

Open Casket Considerations

Child Life Specialists are excellent resources for helping prepare siblings for funerals and processing grief. Use them proactively!

Ongoing Bereavement Support

Support doesn't end at death - families need ongoing resources:

Follow-Up Resources

Sibling-Specific Grief Support

UNDERSTANDING CHILDREN'S GRIEF

Children Process Grief Differently:

  • May ask same questions repeatedly
  • May seem unaffected then suddenly become upset
  • May "play out" death through games (normal)
  • Understanding of death develops over time
  • May need repeated explanations as they mature

This is All Normal: Children don't grieve in linear fashion like adults. Support families in understanding this is expected.

DEVELOPMENTAL UNDERSTANDING OF DEATH BY AGE
Age Group Concept of Death How They Express Grief Communication Approach Nursing Interventions
Infants
(0-12 months)		 • No cognitive understanding of death
• Responds to separation from caregiver
• Senses changes in routine and emotions 		• Irritability, crying
• Changes in eating/sleeping
• Clinging behavior
• Looking for missing person 		• Maintain consistent routines
• Provide physical comfort
• Ensure consistent caregivers
• Minimize disruptions 		• Support primary caregiver
• Maintain feeding/sleep schedules
• Provide sensory comfort (rocking, swaddling)
Toddlers
(1-3 years)		 • Death seen as reversible/temporary
• "They'll come back later"
• Cannot understand permanence
• Egocentric - may think they caused it 		• Regression (toileting, speech)
• Clinging to caregivers
• Temper tantrums
• Repeated questions: "When is mommy coming back?" 		• Use simple, concrete words: "died," "body stopped working"
• NEVER say "sleeping"
• Repeat explanations often
• Reassure not their fault 		• Expect/normalize regression
• Maintain routines
• Provide play therapy
• Reassure repeatedly
Preschool
(3-5 years)		 • Magical thinking predominates
• Death is reversible (like cartoons)
• May believe their thoughts/wishes caused death
• Sees death as temporary state 		• Persistent questioning
• Acting out through play
• Nightmares, fear of dark
• "Death play" with toys
• Behavioral regression 		• Clear, concrete language
• "Your brother's body stopped working and won't work again"
• Correct misconceptions
• Reassure thoughts don't cause death 		• Normalize death play
• Answer same questions repeatedly
• Art/play therapy
• Address guilt/magical thinking
School-Age
(6-12 years)		 • Beginning to understand permanence
• By 9-10: Adult concept emerging
• Understands biological aspects
• Curious about details
• May personify death 		• May hide feelings to protect others
• School performance changes
• Physical complaints
• Asks specific/detailed questions
• May become "caretaker" 		• Provide factual information
• Answer questions honestly
• Explain biological processes
• Give permission to feel emotions
• Encourage expression 		• Normalize all emotions
• Prevent "parentification"
• Facilitate peer support
• School counselor involvement
• Books about death
Adolescents
(13-18 years)		 • Adult understanding of death
• Understands universality, finality
• Can think abstractly
• Aware of own mortality
• May philosophize about meaning 		• May isolate or act out
• Risk-taking behaviors
• Intense mood swings
• May reject support
• Anger at unfairness
• Identity questions 		• Respect need for independence
• Treat as adult conversational partner
• Honor privacy while offering support
• Allow philosophical discussions
• Acknowledge unfairness 		• Peer support groups crucial
• Individual counseling
• Monitor for depression/substance use
• Respect autonomy in grieving
• Offer but don't force support
Key Principle: Always assess the child's ACTUAL developmental level, not just chronological age. Children with developmental delays may have a younger understanding of death regardless of their age. Tailor all communication to their developmental capacity.
SPECIAL CONSIDERATIONS

Sensory Impairments

Children with chronic illness may also have sensory impairments (hearing, vision) that require specific nursing interventions and support.

Hearing Impairment

Assessment - What Might Parents Report?

Infancy

  • No response to voice
  • Absent startle reflex to loud noises
  • No response to dropped objects (pans, toys)
  • Not turning toward sounds

Older Children

  • Speech delays
  • Difficulty following directions
  • Watching faces intently (lip reading)
  • Speaking loudly

Interventions - Promoting Communication

Early Intervention Critical: Hearing loss detected and treated early leads to significantly better language development and educational outcomes. Don't delay referrals for audiology and speech therapy.

Supporting Socialization

Vision Impairment

Assessment - What Might Parents Report?

Infancy

  • No reaction to light being turned on
  • Absent visual tracking (not following faces or objects)
  • Not looking at parent's face during feeding

Any Age

  • Squinting
  • Eye rubbing
  • Excessive blinking
  • Holding objects very close
  • Sitting close to TV

Clinical Example: Shaken Baby Syndrome

NURSING ASSESSMENT LEADING TO DISCOVERY

Initial Assessment: Infant with shaken baby syndrome. Medical team believed child was blind (corneal damage suspected) based on lack of tracking.

Nurse Observation: After several days of care, nurse noticed infant tracking movement around crib.

Assessment Process

  1. Initially suspected auditory tracking (hearing footsteps)
  2. Tested by moving very quietly around crib
  3. Child continued to track visually even without sound cues
  4. Reported to physician that vision appeared to be returning
Lesson: Don't assume initial assessments are final. Continue observing for changes, especially in infants recovering from injury. Small improvements may be first signs of recovery.

Interventions - Supporting Parent-Child Attachment

Promoting Development and Independence

Education and Safety

CAUSES OF VISION IMPAIRMENT

In Children with Chronic Illness:

  • Diabetes: Retinopathy (damage to retinal blood vessels)
  • Prematurity: Retinopathy of prematurity
  • Congenital conditions: Cataracts, structural abnormalities
  • Trauma: Injury, abuse (shaken baby syndrome)
  • Tumors: Brain tumors affecting optic nerve
  • Genetic syndromes: Many include vision impairment

Combined Sensory Impairments

Some children have both hearing and vision impairment (deaf-blind), requiring specialized communication methods:

Early Intervention Saves Potential: For ALL sensory impairments, early detection and intervention is absolutely critical for maximizing the child's developmental potential. Don't hesitate to refer for evaluation if parents report ANY concerns.
APPLICATION

Practice Questions

Question 1

DEVELOPMENTAL FOCUS

A nurse is caring for a 16-year-old admitted two weeks ago for a recurrent brain tumor. What is the priority intervention to promote development?

  1. Encourage staying in touch with her friends
  2. Provide video games during the evening
  3. Promote rest while watching favorite TV shows
  4. Discuss plans to attend college in the future
CORRECT ANSWER: 1

Rationale:

  • #1 CORRECT: Encouraging staying in touch with friends directly promotes developmental tasks for adolescents (peer relationships, identity formation, social connections). This is the priority intervention that specifically promotes development.
  • #2 Incorrect: Providing video games is entertainment but doesn't specifically promote development. It's not wrong to provide, but it's not the PRIORITY for promoting development.
  • #3 Incorrect: Promoting rest is part of care but doesn't address developmental needs. This is supportive care, not developmental intervention.
  • #4 Incorrect: Discussing college plans for the future could give false hope given "recurrent brain tumor." Also, this is future-focused rather than addressing current developmental needs. Focus on present developmental tasks (peer relationships) rather than distant future planning when prognosis is uncertain.

Key Point: Look for the word "promote development" - this means we need an intervention that specifically addresses developmental tasks. For adolescents, peer relationships are THE central developmental task (Erikson: Identity vs. Role Confusion).

Question 2

ASSESSMENT & PRIORITIES

The pediatric nurse case manager is assessing a family's adjustment to their infant's recent diagnosis of a chronic and severely disabling physical condition. What scenario should be addressed at a LATER time?

  1. Father's decision to work more and avoid talking about the infant's care
  2. Mother's feelings of inadequacy and lack of support for the baby
  3. Siblings' new behavior of anger toward the parents and jealousy toward the baby
  4. Fears about how they will financially care for the child as an adult
CORRECT ANSWER: 4

Rationale:

Issues That Need IMMEDIATE Attention (NOT #4)

  • #1 - Father working more/avoiding discussion: This is avoidance coping happening RIGHT NOW. Father is emotionally withdrawing from the situation. This pattern will worsen if not addressed immediately. This is a current coping problem that needs intervention NOW.
  • #2 - Mother's inadequacy and lack of support: Mother feels unsupported and inadequate to care for baby. This is happening NOW and directly affects infant's care. Baby needs an engaged caregiver, and mother needs support immediately. Cannot wait.
  • #3 - Sibling anger and jealousy: This behavior is occurring NOW. While normal response, it still needs to be addressed with support, validation, and coping strategies. Ignoring it will damage sibling relationships and family dynamics. Needs attention now.

Issue That CAN Wait (#4 - CORRECT ANSWER)

  • #4 - Financial fears about child as adult: This is about the FUTURE (years away). While valid concern, it's not an immediate crisis affecting current care and adjustment. Family needs to cope with present reality first before addressing long-term future planning. This discussion can occur later once family has adjusted to initial diagnosis.
Key Distinction: The question asks what should be addressed LATER. All issues are important, but we must prioritize:
  • Immediate priority: Issues affecting current coping, current care, and current family functioning (options 1, 2, 3)
  • Can wait: Future planning that doesn't affect immediate situation (option 4)
SUMMARY

Key Takeaways

Core Nursing Principles

  • Family is the unit of care - not just the child
  • Developmental focus - meet child where they ARE, not their age
  • Family-centered care - families are experts; we are partners
  • Cultural competence - assess and respect beliefs
  • Non-judgmental support - especially for difficult emotions
  • Normalization - focus on capabilities, not limitations
  • Early intervention - earlier is always better

Critical Interventions

  • Assess family impact: Financial, emotional, social, sibling
  • Identify coping patterns: Approach vs. avoidance
  • Prevent social isolation: Maintain peer connections
  • Support ALL family members: Parents, siblings, extended
  • Use resources liberally: Child Life, chaplain, social work
  • Honor family wishes: Especially at end of life
  • Provide ongoing support: From diagnosis through bereavement
MOST IMPORTANT CONCEPTS
  • This is broad, conceptual content - focus on principles that apply across conditions
  • Family impact is multifaceted - practical, financial, emotional, social
  • All family members need support - child, parents, siblings each have unique needs
  • Coping is non-linear - families cycle through grief stages; this is normal
  • Normalization promotes health - focus on what child CAN do
  • Early intervention improves outcomes - don't delay referrals
  • End-of-life care is family-centered - honor wishes, provide extensive support
  • Children grieve differently - concrete thinking requires clear language
  • Resources exist to help - know them and use them proactively
Final Thought: Caring for children with chronic illness or terminal conditions requires us to support not just the child's medical needs, but the entire family system through one of life's most difficult journeys. Our role extends far beyond physical care to emotional, spiritual, and psychosocial support. We must balance hope with realism, encourage normalization while respecting limitations, and provide family-centered care that honors each family's unique needs, values, and wishes. Most importantly, we must approach every family with compassion, cultural sensitivity, and without judgment - recognizing that there is no "right way" to cope with pediatric chronic illness or death.