Week 7: Chronic Illness, End of Life, Burns

Complex Chronic Condition

medical condition lasting >1 year that either affects multiple organ systems or critically affects one organ system requiring specialty expertise

• involves dependence on medical technology & frequent healthcare use

• nurs care: care coordination, teaching family complex skills, equipment management, and planning for transitions across care settings

Trends of Pediatric Chronic Care

developmental focus, family-centered care, improved communication, therapeutic relationships, culturally sensitive approaches, shared decision-making, normalization of life, and structured transitions

Impact of Chronic Illness on Parents

Alters parental role and identity; increased chronic stress, role strain, and differing responses between mothers and fathers

• Single-parent families experience increased burden

Impact of Chronic Illness on Siblings

May experience decreased parental attention, jealousy, anxiety, or behavioral problems; may assume caretaking roles

• can lead to negative feelings towards sick sibling

Coping with Ongoing Stress & Periodic Crisis → Nurs Care

• provide anticipatory guidance & emotional support

• assess & identify stressors

• aid in coping & problem solving

• empower family/parents

Coping Mechanisms Parents of Chronic Illness in Children → Approach

considered healthy coping mechanism; proactive problem solving, seeking support, information-seeking

Coping Mechanisms Parents of Chronic Illness in Children → Avoidance

denial that child is sick, withdrawal, minimizing illness

Assisting Family in Managing Feelings → Shock and Denial

first stage following diagnosis leading to numbness, disbelief, or denial

• nurs role: provide information gently, allow time to process, offer emotional support, refer to counseling/support groups

Assisting Family in Managing Feelings → Reintegration and Acknowledgement

third stage where family sets realistic expectations, and reintegrates illness care into daily life

• nurs role: help set realistic goals, normalize family routines, connect to community resources

Assisting Family in Managing Feelings → Adjustment

second stage involving open admission that the condition exists

Assisting Family in Managing Feelings → Support

involves establishing a support system

Hopefulness as a Coping Mechanism

maintaining realistic hope supports resilience

• nurs care: foster hope by focusing on achievable goals, symptom control, and quality-of-life interventions while providing honest prognostic information

Health Education and Self-Care for Pediatric Patients

Provide age-appropriate teaching that promotes self-management (medication adherence, device care, symptom recognition) of condition progressively transferring responsibility toward the child/adolescent

• enhances autonomy and safety

Nursing Assessment for Chronic/Complex Conditions in Peds

includes medical history, technology needs, psychosocial status, family dynamics, developmental status, school functioning, and community supports

Family Coping Methods → Parents

• encourage participation in peer support programs linking families with others who have lived experience

• encourage maintaining normal routines, roles, and activities as much as possible to support child development and family cohesion

Family Coping Methods → Child

encourage expression of emotions; encourage normalization of life and routine as much as possible

Discharge Teaching

• educate about modifications to ADLs

• educate & demonstrate safe transportation techniques (car seat adaptation, oxygen/circuit management, securing equipment)

• establish realistic future goals

Promoting Normal Development → Early Childhood

focus on attachment, trust-building, parent-infant interactions, separation from parents, sensory stimulation

• minimize developmental delays due to illness or hospitalization

Promoting Normal Development → School Age

support industry and competence by enabling school participation, tutoring, peer interaction, and realistic goal setting

Promoting Normal Development → Adolescence

Encourage independence in self-care, involve in decision-making, confidentiality discussions, transition planning to adult care, and support peer relationships and identity formation

Principles of Pediatric Palliative Care

focus on relief of suffering, symptom control, psychosocial and spiritual support, family-centered decision-making, continuity across settings, and maximizing quality of life from diagnosis onward; not only at end of life

Concurrent Care

allows simultaneous pain/symptom management and palliative services, enabling symptom management and quality-of-life supports while disease-directed therapy continues

Decision-Making at End of Life

use shared decision making to establish goals of care, prognosis, code status, withdrawal or withholding of life-sustaining treatment; discuss hospital, home or hospice care

Child End of Life → Nursing Care

• pain and symptom management → relieve suffering, provide education and support

• fear of actual death → help family decide on home or hospital death and coordinate care accordingly  

• fear of child dying alone & lack of parental presence → supporting family presence, offering memory-making, facilitating rituals, coordinate visiting, offer emotional support

Organ/Tissue Donation → Pediatric Considerations

Sensitive, time-critical conversations; Address parental grief, provide clear information, obtain consent, and support family through the process, recognizing cultural and religious beliefs

Sickle Cell Anemia (SCA)

autosomal recessive lifelong disease where normal hemoglobin A is partially or completely replaced by an abnormal sickle cell hemoglobin (HbS)

• one of the most common genetic diseases

• predominantly affects African Americans

Pathophysiology of Sickle Cell Disease

clinical manifestations of sickle cell disease results in:

• obstruction of microcirculation → severe pain, ischemia

• vascular inflammation → endothelial damage

• increased RBC destruction → reduced lifespan to 10-20 days

• chronic organ damage → spleen, liver, kidneys, lungs, brain, bones

Symptoms of Sickle Cell Exacerbation

triggered by hypoxia, dehydration, acidosis, cold exposure, stress, and fever

• vasocclusive, acute splenic sequestration, aplastic crisis, hyperhemolytic cerebrovascular accident, acute chest syndrome, infection

Hemoglobin Electrophoresis Test

distinguishes a child with the trait vs a child with the disease

Acute Splenic Sequestration

symptom of sickle cell exacerbation characterized by sudden pooling of blood in spleen which can lead to hypovolemia, severe anemia, shock

• manifestations: rapidly enlarging spleen, tachycardia, pallor

Vaso-Occlusive Crisis (Pain Crisis)

most common acute complication occurring when sickled RBCs obstruct blood flow producing ischemic pain in bones, chest, abdomen, and joints

• management: IV fluids, opioids, oxygen, rest, avoid ice

Aplastic Crisis

symptom of sickle cell exacerbation characterized by sudden decrease in RBC production causing profound anemia and reticulocytopenia; may require transfusion

Hyperhemolytic Crisis

symptom of sickle cell exacerbation characterized by exaggerated RBC destruction with severe anemia, jaundice, and elevated reticulocytes

Acute Chest Syndrome (ACS)

symptom of sickle cell exacerbation resembling pneumonia occurring due to infection, fat embolism, or pulmonary infarction

• manifestations: fever, chest pain, tachypnea, hypoxia, cough

• tx: antibiotics, oxygen, incentive spirometry, IV fluids, pain control, possible transfusion

Sickle Cell Anemia → Diagnosis

standard universal screening of newborn via sickle turbidity test (Sickledex) via finger/heel stick

• may not be recognized until toddler or preschool age during a crisis resulting from acute respiratory tract or GI infection

Sickle Cell Anemia → Therapeutic Management

aim is to prevent sickling; care is supportive and symptom based

• provide rest & minimize energy expenditure

• prioritize oxygen

• hydration (IV or PO) & electrolyte replacement

• meds for pain relief

• antibiotics for infection (penicillin prophylaxis)

• blood replacement for severe anemia

Sickle Cell Anemia → Treatment

• pain management: opioids (morphine, oxycodone, methadone) PO or IV, IV Ketoralac *may appear as drug seeking 

• hydroxyurea: long term med that Increases fetal hemoglobin (HbF), reducing sickling and improving RBC survival

• folic acid: supports healthy RBC development

Organs Affected by Sickle Cell Anemia

brain (stroke, paralysis, hemorrhage), eye (blindness), liver/gallbladder (gallstones, hepatomegaly), spleen (sequestration, splenomegaly), kidneys (hematuria, inability to concentrate urine), bones (avascular necrosis, osteomyelitis), skin (chronic ulcers)

Psychosocial Impact of Sickle Cell Disease

disrupts schooling, peer relationships, independence, and mental health; high risk for depression/anxiety; regular mental health screening recommended.

Informed Consent in Pediatrics

A legal and ethical requirement in which parents or legal guardians authorize medical treatment for their child. Valid informed consent includes:

• full disclosure of risks/benefits

• comprehension, voluntariness,

• competence of the decision-maker

• adolescents may consent for certain services depending on state laws

Eligibility for Giving Informed Consent

• informed consent of parents/legal guardians

• evidence of consent

• informed consent of mature/emancipated minors

• tx w/p parental consent

• adolescent, consent and confidentiality

• informed consent and parental right to child’s medical chart

Preparation for Diagnostic and Therapeutic Procedures

• focus on psychologic preparation of child/family 

• establish trust and provide support → nurse’s first interaction should be warm and directed to the family

• provide an explanation

• parental presence and support

Age-Specific Preparation for Procedures → Infant

develop trust and sensorimotor thought; focus on maintaining parental presence, minimizing separation, using soothing techniques, distraction (rattles, music), swaddling, and slow, gentle handling

Age-Specific Preparation for Procedures → Toddler

developing autonomy and sensorimotor to preoperational thought; use simple explanations, offering choices, using play, acknowledging fears, and avoiding phrases that may be misinterpreted

• will often use negative behavior, egocentric thought, animism

Age-Specific Preparation for Procedures → Preschooler

developing initiative and preoperational thought; may see illness as punishment.; fear body intrusion and mutilation; use simple models, allow handling of equipment, provide clear explanations, and allow expression of fear

Age-Specific Preparation for Procedures → School-Age

developing industry and concrete thought; explaining reasons for procedures, using diagrams, offering participation (holding equipment), and reinforcing coping strategies

Age-Specific Preparation for Procedures → Adolescent

developing identity and abstract thought; value autonomy, privacy, and body image; preparation includes full explanations, involving them directly in decisions, providing confidentiality, and recognizing peer influence; family conflict is common

Physical Preparation for Procedures

involve child, provide distraction (only if they are too young), encourage expression of feelings, use play in procedures, prepare family

Surgical Preparation

• preop → encourage parental presence, preop sedation

• intraop → monitoring for complications

• postop → airway monitoring, pain control, hydration, etc

Skin Care & General Hygiene

• Maintain healthy skin → peds skin is thinner, more susceptible to injury & fluid loss

• Bathing → use as an assessment opportunity and observation of mobility

• Hair care

• Feeding sick child

• Family teaching & home care

Fever vs. Hyperthermia

• fever → occurs due to a physiologic process (infection/inflammation)

• hyperthermia → rise in body temp due to external factors

Safety in Peds

• ID bands → must wear at all times

• environmental safety → removing small choking hazards, monitoring toy safety, ensuring bed rails are up, securing lines, sleep safety

Infection Control in Peds

Includes appropriate PPE, isolation, and family education.

• airborne, droplet or contact precautions

Transporting Pediatric Patients

method depends on age, condition and destination; critically ill patients require team transport with monitoring.

• ex: parent holding infant, crib, stretcher, wheelchair, wagon, bed

Transporting Pediatric Patients → Restraining Methods

• mummy restraint or swaddle → for infants

• arm/leg/elbow restraints → prevents from pulling lines or surgical sites

Positioning for Procedures

Goals is to minimize movement and discomfort while maximizing safety; usually involves analgesia and/or sedation; use restraints if needed

• always provide explanation and simple guidance

Specimen Collection → Stool

Use tongue depressor to collect center portion; for infants, scrape stool from diaper. Avoid contamination with urine

Specimen Collection → Respiratory Secretions

Includes nasopharyngeal swabs, sputum induction, or aspiration. Often requires assistance from RT.

Specimen Collection → Urine

options include:

• Urine Collection Bag → Adhesive bag attached to perineum for infants; Best for non–clean-catch samples

• Clean-Catch → requires cleansing of genital area, midstream collection

• 24-Hour Urine Collection → Collect all urine in a container kept on ice

• Catheterization 

• Diapers → use cotton balls to absorb urine in diaper then squeeze into container

Peds Med Admin

always want to show demonstration of med preparation to family

• PO meds: place liquid meds in the side of cheek

• IM Injection Sites: vastus lateralis, deltoid, ventrogluteal

• IV Access: commonly placed in hands or feet

Intake & Output

accurate measurement is essential 

• diaper weighing technique → 1g of wet diaper equals 1mL

Alternative Feeding Methods

• TPN → IV nutrition for children unable to use GI tract

• NG, OG (gavage feeding) → when infants cannot suck/swallow effectively, administering feeds slowly

• Gastrostomy → long-term feeding via surgically placed G-tube; requires daily stoma care, flushing, correct formula preparation

Elimination Procedures → Enemas

Used for constipation or pre-procedure bowel preparation; volume determined by age/weight. Avoid large-volume enemas in infants; use saline-based solutions to prevent electrolyte imbalance

Elimination Procedures → Ostomy

Includes pouch changing, stoma assessment (should be red and moist), skin protection, and teaching how to manage output. C

• children may struggle with body image

Respiratory Support Procedures

• Oxygen (Inhalation) Therapy

• End-Tidal CO₂ Monitoring (ETCO₂) → Measures ventilation status and effectiveness of CPR. Useful in asthma, sedation, and ventilated patients. Normal pediatric ETCO₂: ~35–45 mmHg

• Chest Physiotherapy & Postural Drainage → Used for CF and pneumonia to mobilize secretions via percussion & vibration

• Intubation 

• Mechanical ventilation → child can’t breathe on own, requires sedation

Respiratory Support Procedures → Tracheostomy

Surgical airway used for long-term ventilation or emergencies; requires sterile cleaning, suctioning, and emergency supplies at bedside (1/2 size smaller)

• always have another nurse or RT present at bedside for trach care

• complications: occlusion, accidental decannulation

Cuffed vs. Uncuffed Trach Tubes

• Cuffed: used when sealing airway is required (ventilation, aspiration risk).

• Uncuffed: free standing; used in smaller children to protect tracheal mucosa

Respiratory Support Procedures → Chest Tube

sterile procedure that removes air/fluid from pleural space due to pneumo/hemothorax or pleural effusion; suction at -20cm is standard

• nurs care: assess hematologic studies prior, administer pain/sedation meds, ongoing assessment, strict I&O of drainage, chamber stays lower than chest to prevent backflow

Burns → Common Patterns

• Toddlers: hot water scalds most common

• Older children: flame-related burns

• Males: structural fires from playing with matches/lighters

Burns Su

First-Degree Burns

superficial with intact epidermis; skin is red dry and blanches with pressure; painful/discomfort lasting 48-72hr; no blisters

Second-Degree Burns

superficial or deep partial thickness burns into dermis; appears edematous, wet, shiny and blistered; blanches w/ pressure; painful and sensitive to touch/wind

• superficial → heals in <21 days

• deep → heals in >21 days

Third-Degree Burns

full thickness burn extending into blood vessels past dermis; appears leathery, waxy, white, brown, or black w/ dry surface and exposed vessels; no blanching; no sensation due to nerve destruction

•  requires grafting for healing

Fourth Degree Burns

most severe burn extending into the bone/muscle; appears black, charred, leathery, dry; may show exposed muscle or bone; extremity movement limited; no sensation due to nerve destruction

• autografting required for healing w/ amputation being likely