Children and youth with special health care needs (CYSHCN) have or are at risk of having chronic physical, emotional, behavioral, and developmental conditions and require more health-related services than the general population (1). Chronic medical conditions are generally defined as those that last > 12 months and are severe enough to create limitations in usual activity.
Examples of chronic illnesses in CYSHCN include asthma, cystic fibrosis, congenital heart disease, diabetes mellitus, attention-deficit/hyperactivity disorder, and depression.
Examples of chronic physical disabilities in CYSHCN include meningomyelocele, hearing impairments, visual impairments, cerebral palsy, and loss of limb function.
Approximately 20% of children and youth in the United States are CYSHCN (2).
Effects on the children
CYSHCN may have activity limitations, frequent pain or discomfort, abnormal growth and development, and more hospitalizations, outpatient visits, and medical treatments than their peers. CYSHCN are less likely to be engaged at school and to flourish than peers; children with severe disabilities may be unable at times to participate in peer activities (3).
A child's response to a chronic health condition largely depends on their developmental stage when the condition occurs; for example, children with chronic conditions that appear in infancy will respond differently than children who develop conditions during adolescence. School-aged children may be most affected by the inability to attend school and form relationships with peers. Adolescents may struggle with their inability to achieve independence if they require assistance from parents and others for many of their daily needs; parents should encourage self-reliance within the adolescent’s capability and avoid overprotection. Adolescents are going through a time when being similar to peers is very important, so they find it particularly difficult to be viewed as different (4).
CYSHCN may have recurring or prolonged hospitalizations, and appropriate services can be set up in the hospital to support their development. Age-appropriate playrooms can be set up and a school program can be initiated with the oversight of a trained child life specialist. Children can be encouraged to interact with peers whenever possible.
When a child is hospitalized, all procedures and plans should be explained to families and children whenever possible so the families know what to expect during the hospitalization, thus relieving the anxiety that can be created by uncertainty.
Effects on the family
For families, having a child who has a chronic health condition can lead to loss of their hope for an “ideal” child, neglected siblings, major expense and time commitment, confusion caused by conflicting systems of health care management, lost opportunities (eg, family members providing primary care to the child are therefore unable to have a full-time job), and social isolation. Families of CYSHCN are more likely to experience poverty and poor health (3). Siblings may resent the extra attention the ill child receives. Such stress may cause family conflict, especially when there are preexisting difficulties with family function.
Conditions that affect the physical appearance of an infant (eg, cleft lip and palate, hydrocephalus) can affect the bond between the infant and family members or caretakers. Once an abnormality is noted, parents may react with shock, denial, anger, sadness or depression, guilt, and anxiety. These reactions may occur at any time in the child’s development, and each parent may be at a different stage of acceptance, making communication between them difficult. Parents may express their anger at the clinician, or their denial may cause them to seek many opinions about their child’s condition.
Care coordination
Without coordination of services, care is crisis-oriented. Some services may be duplicated, whereas others may be neglected. Care coordination requires knowledge of the child’s condition, family and support systems, and community. CYSHCN from low-income families may fare worse than others because they often lack access to care coordination services (5).
All health care professionals who care for CYSHCN should ensure that someone is coordinating care. Primary care practices often coordinate care services for children with medical complexity, a concept known as the patient-centered medical home (6). Sometimes the care coordinator can be the child’s parent. However, the systems that must be negotiated are often so complex that even the most capable parents need assistance. Other possible coordinators include subspecialty physicians and program staff, community health nurses, and staff of a third-party payer. Regardless of who coordinates services, families and children must be partners in the process.
References
1. Stille CJ, Coller RJ, Shelton C, Wells N, Desmarais A, Berry JG. National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs. Acad Pediatr. 2022;22(2S):S1-S6. doi:10.1016/j.acap.2021.12.022
2. Ghandour RM, Hirai AH, Kenney MK. Children and Youth With Special Health Care Needs: A Profile. Pediatrics. 2022;149(Suppl 7):e2021056150D. doi:10.1542/peds.2021-056150D
3. Health Resources and Services Administration (HRSA): Children and Youth with Special Health Care Needs (CYSHCN). Accessed February 13, 2025.
4. Compas BE, Jaser SS, Dunn MJ, Rodriquez EM. Coping with chronic illness in childhood and adolescence. Ann Rev Clin Psychol. 2012;8:455–480. doi:10.1146/annurev-clinpsy-032511-143108
5. Breuner CC, Alderman EM, Jewell JA; COMMITTEE ON ADOLESCENCE; COMMITTEE ON HOSPITAL CARE. The Hospitalized Adolescent. Pediatrics. 2023;151(2):e2022060646. doi:10.1542/peds.2022-060646
6. Kuo DZ, McAllister JW, Rossignol L, et al. Care coordination for children with medical complexity: Whose care is it, anyway? Pediatrics. 2018;141(Suppl 3):S224–S232. doi:10.1542/peds.2017-1284G
