Chronic and Medically Complex Conditions in Children and Adolescents

Chronic cardiovascular conditions in children usually fall into 2 categories: either congenital or acquired.

• Congenital Heart Conditions
• Congenital heart conditions include structural defects present at birth, like atrial septal defects, aortic stenosis, tetralogy of Fallot, or coarctation of the aorta. These conditions negatively impact systemic blood flow and oxygenation of the body’s tissues. They can include symptoms like cyanosis, shortness of breath, fatigue, and poor growth, sometimes progressing to heart failure. Children with congenital heart defects may have been diagnosed before birth through antenatal screenings, and many of them will require surgery shortly after birth or within the first few years of life to repair structural abnormalities, some of them requiring multiple surgeries throughout life. Additional treatments may include implantable devices such as pacemakers or defibrillators, as well as a wide range of medications to reduce the workload on the heart and manage hemodynamics (Children’s Hospital of Orange County [CHOC], n.d.; Doernbecher Children’s Hospital, n.d.).
• Among the common types of medications prescribed for these children are beta blockers, ACE inhibitors, diuretics, antiarrhythmics, anticoagulants, inotropes, and digoxin. In severe cases, a heart transplant may be indicated, and children will need their symptoms managed while they await an eligible organ for replacement.

Congenital Heart Defects in Children

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• Acquired Heart Conditions 
• Acquired heart conditions include diseases such as Kawasaki disease, rheumatic heart disease, myocarditis, endocarditis, coronary artery disease, and cardiomyopathy, all of which develop after birth. They are related to various external causes such as diseases, environmental exposures, and lifestyle factors like diet and activity level.
• Presentation of these conditions varies, but often includes a preceding viral or bacterial infection followed by nonspecific symptoms such as fatigue, shortness of breath, peripheral edema, joint pain, rashes, fever, or new arrhythmias or heart murmurs. These conditions may not always be diagnosed immediately, and symptoms may increase in number or intensity before the underlying condition is identified. Often, serum lab work, echocardiograms, electrocardiograms, and imaging are needed to confirm the diagnosis (CHOC, n.d.; Doernbecher Children’s Hospital, n.d.).

Treatment of these conditions may include intravenous antibiotics, immunoglobulins, anticoagulants, antihypertensives, and even implantable devices. While acute illness may eventually resolve, there are often lifetime implications, such as an increased risk of endocarditis with dental procedures and cardiovascular disease in adulthood. Anticoagulants or antihypertensives may need to be continued even after the acute illness resolves. Children who have received immunoglobulin therapy, such as with Kawasaki disease, will need to delay live vaccines (like the MMR) for 6-12 months to develop an appropriate immune response to the included antigens; this can put them at additional risk of acquiring infectious diseases (CHOC, n.d.; Doernbecher Children’s Hospital, n.d.).

There are a few outliers, such as arrhythmias or pulmonary hypertension, that can be either congenital or acquired, depending on the specific circumstances surrounding the conditions. Some arrhythmias, like Long QT syndrome, are highly genetic and run in families. Some children may be screened for arrhythmias or cardiomyopathy based on family history and risk factors. However, since these conditions are largely asymptomatic, they may go unnoticed until patients experience an acute cardiac event or arrest, usually with physical activity. For children who survive those events or are identified through routine screening, implantable defibrillators, lifelong medication use, and restrictions of certain activities are usually indicated (CHOC, n.d.; Doernbecher Children’s Hospital, n.d.).

For children with any cardiovascular disease, frequent follow-up with a cardiologist, testing with ECGs or echocardiograms, stress tests, various medications, and activity limitations are likely to be part of their day-to-day lives.

Respiratory conditions are among the most common childhood chronic illnesses, typically falling into two main categories: restrictive and obstructive.

• Restrictive Lung Conditions
• Restrictive lung conditions are characterized by impairment of lung expansion and compliance and include diagnoses such as bronchopulmonary dysplasia as well as orthopedic and neuromuscular conditions that affect chest wall expansion or weaken respiratory muscles.
• Bronchopulmonary dysplasia (BPD) is among the most common of restrictive childhood lung conditions and typically results from prolonged ventilator and oxygen use in premature infants. Underdeveloped lungs exposed to high levels of oxygen experience significant damage and remodeling that results in lifelong fibrosis and decreased lung compliance. This can cause feeding difficulties, tachypnea, wheezing, and decreased pulmonary function. Depending on the gestational age at the time of birth and the duration of ventilator use, the condition may improve as the children become older; however, others may have lifelong lung problems and even oxygen dependence. Common medications used for BPD include bronchodilators, corticosteroids, and diuretics (National Heart, Lung, and Blood Institute [NHLBI], 2022).
• Neuromuscular disorders such as muscular dystrophy or spinal muscular atrophy can weaken respiratory muscles, impairing ventilation, particularly during sleep. Musculoskeletal conditions, such as pectus excavatum, restrict lung inflation due to skeletal changes. These children have an increased risk of pneumonia because of the inability to inflate the lungs fully. They often require support for airway clearance and ventilation while sleeping, such as BiPAP (Bach et al., 2021).
• Obstructive Lung Conditions
• Obstructive lung conditions are characterized by airway inflammation, overproduction of mucus, and airway constriction, leading to increased airway resistance and difficulty moving air in and, particularly, out of the lungs.
• Asthma is the most common obstructive lung disease in children and is a complex over-sensitization of the pulmonary system to triggers like allergens, exercise, infection, and environmental irritants/pollution. Children with asthma experience recurrent, reversible episodes of coughing, wheezing, shortness of breath, and chest tightness that often affect activity tolerance and quality of life. Management for asthma depends on the severity and ranges from avoidance of triggers, inhaled bronchodilators as needed, or daily use of low to high doses of inhaled corticosteroids. Flare-ups can occur with illness, at certain times of year, or with specific exposures. They may require systemic corticosteroids or, in severe cases, additional respiratory support such as supplemental oxygen or mechanical ventilation (Cleveland Clinic, 2023).
• Cystic fibrosis (CF) is another common cause of lung obstruction, characterized by thick, difficult-to-clear mucus that may harbor infectious pathogens and block the airways. Children with CF live with chronic productive cough, frequent respiratory infections, and poor growth/failure to thrive. The thick secretions also impact other body systems, and these children experience GI and reproductive problems. The disorder is usually identified shortly after birth, and treatment, including pancreatic enzyme replacement, chest physiotherapy, bronchodilators, antibiotics, and hospitalization for exacerbations, is lifelong. Because of the risk of exposure to sick peers and the often severe illness from common respiratory pathogens, school attendance and social engagement are often significantly affected. While significant advances in life expectancy have been made in recent decades, most people with CF do not survive beyond their late 40s(Cleveland Clinic, 2024).

Cystic Fibrosis

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Those are among the most common chronic respiratory conditions; however, many others exist that may affect children. Across all pulmonary diseases, there is a common need for strict adherence to medication and respiratory function regimens, early identification and intervention for exacerbations, and recognition of the social and mental health consequences of activity limitations.

Neurological disorders can cause developmental delays, motor impairment, seizures, and functional decline. They are broadly classified into 2 main categories based on the part of the nervous system they affect.

• Central Nervous System
• Neurological disorders may affect the brain and spinal cord, or the central nervous system, leading to impaired cognition, sensory processing, and motor function. Among the most common childhood neurological conditions is epilepsy. There are many different types of seizure presentation, depending on which part of the brain is impacted, and can range from generalized tonic-clonic seizures (previously called grand-mal) to absence seizures, which appear to be brief lapses in awareness. An electroencephalogram is necessary to diagnose epilepsy, often along with neuroimaging. Treatment is primarily pharmacological, with antiepileptics, or an implantable device such as a vagus nerve stimulator. Some patients may benefit from a ketogenic diet (Minardi et al., 2019). According to the Epilepsy Society (2024), the ketogenic diet may help reduce seizures and have other positive effects for patients with epilepsy.
• Some types of epilepsy, particularly those that develop when children are very young, may resolve with age, but often the diagnosis is lifelong. The impact of epilepsy on daily life can vary widely depending on how well controlled the disease is, as well as the type and frequency of seizures that occur. Activity limitations, such as in sports, swimming, and driving, may affect the quality of life for active kids, especially teens who want independence. Injuries like broken bones, lacerations, or head trauma can occur from falls when experiencing a seizure. Children with frequent seizures are also more likely to experience adverse effects on cognition, learning, and processing speed, and behavioral changes (Minardi et al., 2019).
• Cerebral palsy (CP) is another common neurological disorder and is caused by injury to the brain’s motor center during or shortly after birth. This disorder causes muscle spasticity and weakness, affecting muscle tone, posture, and movement. Children with CP may have minor mobility limitations or be completely unable to walk. Treatment involves intensive physical and occupational therapy, muscle relaxants, orthopedic interventions to address shortened muscles or scoliosis, and assistive devices such as leg braces, crutches, canes, or wheelchairs. Cerebral palsy does not impact cognition; however, about 30-50% of children with CP also experience injury to other parts of the brain and have comorbid cognitive impairment (Makris et al., 2021).
• Peripheral Nervous System
• Neuromuscular disorders may affect the peripheral nervous system, leading to progressive weakness, impaired mobility, and difficulty breathing.
• One of the most well-known neuromuscular conditions is Duchenne muscular dystrophy (DMD), a genetic disorder primarily affecting boys. Children with DMD lack the protein dystrophin, which plays a vital role in maintaining muscle structure. This results in progressive weaknesses and loss of motor function. These children may sustain injuries from falls, and eventually, muscle weakness may progress to the respiratory muscles, leading to respiratory failure. Treatment includes corticosteroids, physical therapy, assistive devices, and respiratory support. The physical impact of caring for and moving patients with DMD can become increasingly challenging for caregivers as the children grow. The loss of previous muscle and movement abilities can also be very frustrating and challenging for children to process during what is usually a very active time in life (Powell et al., 2021). 

Children with chronic neurologic conditions often have severely impacted quality of life and need frequent specialty and therapy services, assistive devices, and medications.

Renal disorders in children are either congenital or acquired, both impairing kidney function, causing fluid and electrolyte imbalances, and even progressing to end-stage renal disease (ESRD).

• Congenital Renal Disorders
• Several structural abnormalities can occur during fetal development of the kidneys and the urinary tract, leading to congenital anomalies. Conditions like renal agenesis (absence of one or both kidneys), hydronephrosis, and kidney dysplasia are often diagnosed via fetal ultrasound before birth. Renal damage and impaired function can lead to hypertension and eventual kidney failure. Treatment ranges from observational to surgical (Riley Children’s Health, n.d.).
• Other conditions, like vesicoureteral reflux or posterior urethral valves, may be diagnosed after birth when problems like frequent and recurrent UTIs occur. Imaging, such as renal ultrasound or a voiding cystourethrogram (VCUG), is commonly used for diagnosis. Voiding dysfunction can lead to problems with hygiene, diaper rashes, impaired toilet training, and even kidney stones. Frequent antibiotic use can lead to antibiotic resistance and the development of superbugs. Long-term use of prophylactic antibiotics or surgical intervention may be used for management (Mayo Clinic, 2025).
• Acquired Renal Disorders
• Acquired kidney disease occurs as a progressive loss of kidney function from various conditions like glomerulonephritis, diabetes, and hypertension. Chronic kidney disease (CKD) is classified into 5 stages based on declining glomerular filtration rate (GFR). Children with CKD may experience fatigue, deficiencies like anemia or bone abnormalities, electrolyte imbalances, and failure to thrive. Urine studies, kidney function tests, and renal imaging are ongoing from diagnosis onward as the disease progresses. CKD cannot be cured, and treatment focuses on slowing its progression, managing blood pressure with ACE inhibitors or angiotensin receptor blockers, and supplementing nutrition as much as possible. Eventually, in ESRD, dialysis or a kidney transplant are the only viable options for survival (National Institute of Diabetes and Digestive and Kidney Diseases, 2022).

• Hematologic
• There is a wide range of disorders affecting blood cell production and clotting function, as well as malignancies, that can affect children with varying impacts on daily life and life expectancy.
• Among significant hematologic conditions is sickle cell disease (SCD), an inherited disorder of hemoglobin that causes red blood cells to become abnormally (sickle) shaped under stress, such as with infection, dehydration, or hypoxia. The poorly formed red blood cells can occlude the vasculature, causing ischemia to organs. Sickle cell crises cause pain, anemia, stroke, and spleen damage, increasing the risk of infection. The condition is often first detected on newborn screening and is confirmed with genetic testing and hemoglobin electrophoresis. The condition is managed with an antimetabolite (hydroxyurea) to reduce sickling, prophylactic antibiotics, and blood transfusions (Chaney, 2020). Activity modifications are often necessary for a person with sickle cell disease or sickle cell trait. Modifications are primarily aimed at preventing fatigue, hypoxia, dehydration, overheating, and pain crises. Modifications may include limiting activity intensity, avoiding physically maximal-effort tasks, increasing rest breaks to conserve energy, allowing unlimited water breaks, and avoiding exertion in extreme heat or cold to prevent sickling. Activity modifications are especially relevant in physical therapy, occupational therapy, school, and exercise settings.
• Another genetic condition, hemophilia, is an X-linked recessive disorder that results in deficient clotting factors and subsequent prolonged bleeding, easy bruising, and spontaneous joint hemorrhages. Head injuries can result in life-threatening intracranial bleeding, and blunt trauma can result in internal abdominal bleeding. The condition is managed with clotting factor replacement, desmopressin, and, in some cases, gene therapy. Activity restrictions and caution with any activities that could cause head or abdominal trauma, as well as risks with dental and medical procedures or surgery, may negatively impact quality of life, especially for adventurous toddlers and children (Azeredo-da-Silva et al., 2022).
• Oncologic
• Malignancies are among the leading causes of death in pediatric patients and often arise due to genetic mutations or abnormalities in development rather than the environmental exposures and lifestyle factors that typically lead to adult malignancies.
• Leukemia is among the most common hematologic malignancies and accounts for 30% of all childhood cancers. Acute lymphoblastic leukemia (ALL) affects lymphoid cells, and acute myeloid leukemia (AML) affects myeloid stem cells. Children with these conditions present with pallor, fatigue, easy bruising, frequent infections, and even bone pain. Treatment includes chemotherapy and sometimes a stem cell transplant. Diagnosis and treatment, as well as the risk of infection, are very intensive and can be incredibly disruptive to family life, particularly when parents have other, well, children to arrange care for while managing treatment and hospitalizations for the ill child. Poor prognosis adds an additional element of stress and grief to the illness, which may not always have a positive outcome (National Academies of Sciences, Engineering, and Medicine et al., 2022).
• In addition to hematologic malignancies, solid tumors often affect children, including Wilms tumor, osteosarcoma, and neuroblastoma. Wilms tumor is the most common renal malignancy in the pediatric population and most often presents between ages 2 and 5. It presents as a rapidly growing abdominal mass, fever, hypertension, and hematuria. Once diagnosed with imaging and biopsy, emergent nephrectomy is indicated, followed by chemotherapy and radiation. When caught early, this tumor has an excellent prognosis with long-term survival (Dome et al., 2020).
• Osteosarcoma is the most common bone cancer in children, typically affecting long bones, often the femur. It presents with localized swelling and bone pain. The condition is treated with a combination of surgical resection, chemotherapy, and radiation, and the prognosis can be good if caught early, particularly in younger children. Long-term effects on mobility function and self-esteem may occur if limb amputation is needed for extensive lesions (Dome et al., 2020).
• Neuroblastomas arise from cells of the sympathetic nervous system, often in the adrenal glands. They are most common in children under 5 and present with abdominal masses, bone pain, and classic periorbital ecchymosis. Treatment varies in invasiveness level at the time of diagnosis but may include surgery, chemotherapy, radiation, and immunotherapy (Dome et al., 2020).
• Pediatric cancer treatment has improved significantly over recent decades, with survival rates often now as high as 80% thanks to advanced treatment technologies. Early detection, aggressive treatment, and multidisciplinary care are crucial in improving survival and quality of life. Regardless of prognosis and outcome, a cancer diagnosis has significant implications for family function and quality of life, as well as mental health conditions like anxiety, depression, and PTSD for the affected child, parents, and siblings (Dome et al., 2020).

Gastrointestinal disorders that typically affect children can be divided into 2 main categories. Inflammatory and immune-mediated conditions involve inflammation of the digestive tract and functional and structural disorders that can impact digestion, nutrient absorption, and GI motility. All gastrointestinal disorders can result in poor growth, malnutrition, abdominal pain, and negative impacts on quality of life.

• Inflammatory and Immune-Mediated Conditions
• Among common inflammatory bowel diseases are Crohn’s disease and ulcerative colitis (UC), both of which cause chronic inflammation and impair intestinal function. Crohn’s disease can affect any part of the GI tract, with patchy lesions from the mouth to the anus. UC is limited to the colon and rectum and is a continuous lesion. Children with these conditions often have significant abdominal pain, weight loss, and poor growth, which may delay puberty, chronic diarrhea, and even symptoms that progress to joint pain or skin lesions. Endoscopy with biopsy is needed for diagnosis, and treatment includes immunosuppressant medications, nutritional supplementation therapy, and, in serious cases, resection of severely damaged parts of the intestines and colostomy (Silva et al., 2020).

Inflammatory Bowel Disease

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• Celiac disease is an inflammatory condition that is an autoimmune response to gluten in the diet. Chronic inflammation in the presence of gluten destroys the villi of the small intestine, leading to poor nutrient absorption, chronic diarrhea, bloating and gas, poor growth or weight loss, and deficiencies such as anemia. Serologic testing and biopsy are diagnostic, and treatment includes a gluten-free diet to avoid symptoms, promote intestinal healing, and improve nutrient absorption (Crocco et al., 2024).
• Gluten is a prominent part of a typical American diet, and avoiding it can prove challenging, requiring a certain level of food literacy, including reading labels and preparing meals. It can be difficult to eat outside the home, as gluten-free options are more limited at school and in restaurants. However, awareness and popularity of gluten-free options have increased in recent years (Crocco et al., 2024).

• Functional and Structural Disorders
• Among functional and structural disorders, gastroesophageal reflux disease (GERD) is common. Children may be predisposed to this condition due to genetic or lifestyle factors, or even as a long-term sequela of a congenital condition like esophageal atresia. In infancy, the condition can cause fussiness, feeding aversions, or impaired bonding with caregivers. Complications like esophagitis and aspiration pneumonia can occur. Endoscopy and pH monitoring may be indicated in the initial diagnosis. Treatment includes lifestyle modifications such as thickened feedings, special diets, or keeping the head elevated after feedings.  Other treatments may include proton pump inhibitors or even surgical intervention, such as fundoplication. Early diagnosis and management are important to minimize interruptions to normal growth and development (Leung & Hon, 2019).

Chronic disorders of metabolism affect children’s ability to process nutrients, regulate metabolic pathways, and produce energy. They can be genetic, such as inborn errors of metabolism, or acquired at any point in childhood, such as diabetes mellitus.

One of the most common metabolic disorders affecting children is type 1 diabetes mellitus, which often occurs in middle childhood as an autoimmune reaction where the body attacks the beta cells of the pancreas. The exact cause of this destruction of healthy cells is unknown, but T1DM often follows a viral infection. Affected children are completely dependent on insulin, often getting a diagnosis after presenting to clinics or emergency departments in diabetic ketoacidosis (DKA). The immediate need to develop nutritional literacy, count carbohydrates, plan meals, and carefully monitor blood sugar and adjust insulin doses can be very overwhelming for families and children, particularly given the number of painful finger pricks and insulin injections required. Both high and low sugar fluctuations can negatively affect activity tolerance, sleep, school attendance, and a child’s overall well-being. There is an added challenge in social situations involving food, such as school events, birthday parties, holidays, and restaurant meals, which can be frustrating for children and families and pose a safety risk if teachers or other adults are not educated in basic diabetes management. The impacts on mental health and self-esteem for children with T1DM are far-reaching (Los & Wilt, 2023).

For some children with congenital or acquired conditions that result in end-stage organ failure, organ transplantation may be a viable treatment option. Common organs transplanted in children include the heart, liver, kidney, lung, and intestine. Each comes with its own significant risks and lifelong use of immunosuppressive therapy, but they can also provide significant improvement in survival odds and quality of life.

Conditions that may require organ transplantation for children include congenital heart defects, biliary atresia, metabolic liver disease, chronic kidney disease and end-stage renal failure, cystic fibrosis, and short bowel syndrome, among many others. Before transplantation, children may have experienced severe symptoms such as poor growth, fatigue, frequent infections, and dependence on dialysis or mechanical ventilation. After transplantation, life-long immunosuppressive medications are required to avoid organ rejection; these medications increase the risk of infections and serious illness from common pathogens. Corticosteroids may also be indicated. Combined, these medications have a significant side effect list, including delayed wound healing, kidney damage, hypertension, growth delays, osteoporosis, and increased cancer risk. These risks typically do not outweigh the benefits of receiving the donor organ, but it is important to note that this treatment is not a fix-all (Hsu et al., 2023).

Rarely, chronic organ rejection may occur, and re-transplantation may be required. For some conditions where repeated damage to organs is expected even after transplant, such as with cystic fibrosis, there may be limitations on how many times a child can receive a donated organ (Hsu et al., 2023).

Childhood is typically a time of high activity, marked by big leaps in gross and fine motor skills as children learn and grow. Children love to challenge themselves physically as they learn new skills, develop a sense of industry, and incorporate play into everything they do. Muscle weakness, paralysis, skeletal abnormalities, fatigue, poor activity tolerance, pain, frequent illness, and hospitalizations all make it difficult for children to engage in age-appropriate physical activities like free-play, sports, and social events. Use of any assistive devices or technologies, such as walkers, wheelchairs, oxygen tanks, or feeding tubes, can further limit independence and participation in activities.

Limitations to physical activity can negatively impact peer relationships and self-confidence. Inclusive and accessible playgrounds and activities do exist, but are not always available and may still not account for everything a child wishes they could do. Reliance on others for help with self-care, grooming, feeding, or ambulation can be frustrating and negatively impact self-esteem. Teenagers may be unable to drive, something that many adolescents look forward to as a rite of passage into a more independent phase of life.

In addition to missing out on physical engagement with peers, reduced activity levels further compromise overall health and can worsen a child’s condition, limiting their tolerance for physical activity. As children grow, caregivers may experience their own pain, injuries, or limitations, making lifting, transferring, and assisting with ambulation more difficult (Consolini, 2022).

School is among the most important parts of a child’s life and accounts for a large portion of the time they spend. In addition to learning vital skills like reading and math abilities, school is where children socialize and form relationships with peers.

Chronic absenteeism, missing 15 or more days of school within 12 months, is a frequent issue for children with chronic illnesses. The CDC found that 5.5% of all boys and 6% of all girls were chronically absent for health-related conditions in 2022, and chronically ill children were 14% more likely to be chronically absent than healthy peers (Black & Elgadda, 2024). A U.S. National Health Survey found that 21% of children with Chronic Kidney Disease missed more than 18 days of school in any given year (Craven et al., 2023).

Missed school can result from acute illness, symptom flare-ups, medical appointments, hospitalizations, or changes in medication or condition that require stabilization. Inconsistent attendance can result in poor academic performance, impaired peer relationships, negative self-esteem, and even a decreased likelihood of finishing school. Absenteeism is also not equal across race, age, or socioeconomic status. White (6.6%) and Hispanic (6.3%) children were more likely to be chronically absent for health-related conditions than their Asian (1.4%) and Black (3.3%) peers (Black & Elgadda, 2024). And children from poor families are more likely to miss school than children from more affluent families. As children get older, school attendance seems to drop as well, with 5.2% of children ages 5-10 and 6.5% of children ages 14-17 missing for health-related reasons (Black & Elgadda, 2024).

Even when they are attending school, children with chronic conditions typically need individualized education plans (IEPs) or 504 accommodations to support their medical and learning needs. IEPs might offer modifications to the curriculum or method of instruction, speech or occupational therapies, one-on-one classroom support, or accommodations for testing and grading. 504 plans can ensure appropriate staff training or emergency preparedness, access to medications at school, flexible attendance policies, and classroom accommodations such as scheduled breaks or preferred seating assignments. These plans often require significant time and advocacy from caregivers who must navigate both the healthcare AND educational systems (Mangal, 2024).

Children with chronic illnesses often find it difficult to make or maintain friendships. Frequent absence from school, as well as limited participation in sports or activities, can be isolating and make peer relationships difficult. Limb differences or other physical differences, use of medical devices, and dietary restrictions can draw unwanted attention and increase the risk of social anxiety, bullying, or exclusion.

Social relationships are particularly important for adolescents who are trying to develop their own identity separate from the family unit and are heavily influenced by peers. Struggling socially during these formative years can lead to feelings of isolation and depression (Consolini, 2022).

All the considerations thus far can obviously have a significant impact on the mental health and self-esteem of the ill child. They may feel frustrated, anxious, sad, or depressed over physical limitations, disruptions in school and social interactions, or the challenges of frequent symptoms and multiple medications or treatments. They may have issues with body image due to growth delays, musculoskeletal abnormalities, scars, weight fluctuations, or medical devices. The thought of lifelong treatment, dietary restrictions, or the need for assistive devices can create a sense of loss, resentment, or hopelessness. Mental health screening should occur at regular intervals by primary and specialty care providers as well as episodically for any symptoms of impairment (Consolini, 2022).

Children with chronic health conditions are more than twice as likely at 10 years old and 60% more likely at age 15 to have a mental health diagnosis like depression or anxiety as their healthy peers (Queen Mary University of London, 2020). Additional evaluation and care from mental health professionals is necessary to help with coping skills and management of symptoms like panic attacks or thoughts of self-harm or suicide.

It is important to recognize that the impact of chronic illness extends beyond the affected child and affects the entire family unit. For parents, there is emotional strain, financial impacts, and caregiver burnout. Navigating the healthcare system, insurance companies, and making treatment decisions can be overwhelming and exhausting. For working parents, managing their own work expectations and experiencing frequent absenteeism may add an extra strain and financial burden.

Children who are ill from birth often spend long amounts of time in the NICU, have frequent or immediate surgeries, and may have feeding differences, all of which impair parental bonding in the crucial early weeks. Parents who are unable to see, hold, or feed their infant may struggle with guilt, disappointment, anxiety, and grief of lost experiences (Consolini, 2022).

Siblings may be resentful or feel neglected as the chronically ill child is given a disproportionate amount of attention. Strain on family relationships and isolation from other parents or friends who cannot relate only add to the overwhelming nature of chronic disease (Consolini, 2022).

First and foremost, as clinicians, healthcare providers need a solid understanding of disease-specific pathophysiology, potential complications, and the treatments and medications they may encounter. The level of depth of this knowledge will vary by specialty and working location; clinicians working in inpatient pediatrics or in an emergency department will need to have basic knowledge of many conditions, while clinicians working in a subspecialty clinic like pediatric neurology or pediatric cardiac rehabilitation will have a more detailed and specific knowledge of a smaller array of conditions and treatments. Patients and their families will look to their clinicians for understandable information and teaching about diseases and their management, as well as competent care. This includes a thorough physical assessment that identifies subtle changes or warning signs of disease progression or treatment side effects.

In more acute settings, such as surgery, EDs, and inpatient units, healthcare providers may be caring for these patients before or after surgery, transplants, or procedures, or even at the time of diagnosis. They encounter patients and families during times that can be very painful, frightening, and overwhelming. Nurses may also encounter patients at the end of life, which may not be unexpected for families with a chronically ill child, but is still devastating nonetheless.

Care must be delivered in a family-centered, age-appropriate manner. Understanding Erikson’s stages of development can help determine the level of engagement most effective for a child’s developmental stage. Examples include:

1. Infants require comfort holds and security, and their caregivers should be nearby or holding them whenever possible to increase feelings of safety.
2. Toddlers like to assert their autonomy and should be given choices when possible (Do you want the purple or blue bandage? Do you want to hold the square or triangle-shaped block?). They also benefit from distraction during painful procedures; choices like toys, bubbles, and songs are helpful.
3. Preschool children enjoy role-playing and having “jobs” to do. Using a doll or teddy bear to dress up in a hospital gown or give medication can help ease fears and encourage children in this age group to cooperate with their care. A preschool child can work on fine motor skills by being asked to fold a napkin or place all the pegs back into their container.
4. School-age children are curious and may have a lot of questions or want to see how things work. Providing picture books, showing them equipment, or giving simple explanations of how things work is helpful and can become more advanced as children) get older.
5. Adolescents want a sense of autonomy and should be given information honestly and completely. They should be spoken to directly and included in the decision-making process. Making eye contact with the patient, rather than a parent, will help establish trust and make them feel like they are a part of the decision-making in their care. As they approach adulthood, autonomy over their treatment and care should be increasingly shifted to their responsibility; however, adult oversight is still necessary to avoid missed medication doses or other issues with compliance (Halter, 2022).

Recognition of caregivers' and siblings' viewpoints and struggles is also important. Since most of a child’s care will take place outside the healthcare setting, ensuring questions are answered and that everyone is on board with the treatment plan is important. All details of care, including what to expect during hospitalizations, procedures, or with medications, should be explained to all family members in a way that is sensitive to their literacy, fluency, and cultural needs. This means utilization of a professional medical interpreter in the patient's and the family's primary language. It is not advised to use a family member as an interpreter, as they may lack vocabulary or the ability to interpret complex medical terminology, possibly leading to misunderstandings and translation errors (White et al., 2019). Caregivers with the child can invite other family members via phone or video chat if desired; written information to share with others should be provided; and translation services should be utilized when needed.

Recognizing when families need additional resources or assistance with childcare, transportation, financial strain, or caregiver burnout is a central part of comprehensive care. Families in need of additional help can be referred to social workers, community resources, and respite care or home care options.

Beyond the physical care of the primary diagnosis, healthcare providers must be vigilant in assessing the risk of depression, anxiety, and negative self-esteem or body image. Healthcare providers should be on alert for changes in sleep or eating habits, weight loss, dropping grades, lack of interest in usual activities, school refusal, or frequent complaints of stomach aches or headaches (that are separate from the disease process) as indicators of possible depression or anxiety. Screening assessments at routine visits can be used to pick up on concerning mental health symptoms. A Pediatric Symptom Checklist (PSC) is a useful tool for children ages 4-17. For teens, a Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) can be used to assess for depression and anxiety, respectively (AAP, n.d.). Referrals to counseling services or for further evaluation and possible medication management can and should be facilitated.

Healthcare providers can also serve as advocates for peer education, helping to create a culture of inclusion and understanding in schools and community centers. Providing educational resources to schools and families can help with bullying and the social stigma associated with chronic illness. The education of school staff can also enhance their preparedness for emergencies.

Familiarity with state and federal laws regarding accommodations and support available to public school students is also an important part of advocacy, particularly for those in school settings who may interact directly with both the healthcare and education aspects of care.