I. Description of the problem. The federal Maternal and Child Health Bureau (MCHB) defines children with special healthcare needs (CSHCN) as: “those who have a chronic physical, developmental, behavioral, and/or emotional condition and who require health and related services of a type or amount beyond that required by children generally.”
A. Epidemiology. Children with chronic health conditions are of increasing interest and importance to primary care clinicians because of (1) their increasing prevalence; (2) the growing recognition that these children and their families are at higher than usual risk for family stress, social isolation, and difficulties with social and psychological adjustment; and (3) the additional challenges they present for comprehensive pediatric care and coordination.
B. Prevalence. The true prevalence of chronic health conditions in childhood is unknown because of varying definitions used for the presence of a “chronic health condition”:
Very different numbers of children are identified if parents are asked using the definition above; versus if the child is limited in participating in the usual activities for a child of similar age; or if they are asked to identify the presence of specific diagnoses.
The National Survey of CSHCN identified 12.8% of children in 2001 and 13.9% of children in 2005 as having an SHCN. Among children aged 5 years and less the prevalence was 9%, whereas among children aged 6 years and older it was 16%.
The National Survey of Children’s Health identified 22% of parents who reported their children to have an SHCN in 2005. These differences are based on slightly different definitions of what constitutes an SHCN and the level of severity of the condition.
13.6% of the children surveyed were reported to have one of the 16 specific conditions listed, whereas 8.7% had two or more conditions.
10.6% of children had conditions rated as “moderate” or “severe,” whereas 11.6% were rated as “mild.”
Among children aged 6-17 years, health conditions were reported to “interfere with the child’s ability to attend school regularly, participate in sports and other activities, and/or make friends” in 17.2%
Overall, the prevalence of chronic health conditions in children has increased considerably over the past 25 years. A few specific conditions have decreased in prevalence because of greater availability of prevention (e.g., spina bifida); others have increased because of improvements in survival (e.g., leukemia); a few new conditions have emerged (e.g., HIV/AIDS); but the largest proportion of recent growth has been driven by a few high-prevalence conditions. Asthma now affects almost 10% of children and adolescents; obesity well over 15%; and behavioral/mental health conditions are now estimated at more than 15%.
Children with chronic physical illnesses have more than their share of emotional, behavioral, educational, and social difficulties. For example, 12.7% of parents who report that their child has a special healthcare need also report “a behavioral or conduct problem,” compared with only 0.8% of parents who do not report an SHCN. Similarly, 11.4% of parents who report that their child has an SHCN also report “anxiety” and 8.3% report “depression,” in comparison to 0.6% and 0.3%, respectively among parents who do not report an SHCN.
II. Salient issues. There are considerable commonalities among the experiences of children who have various types of chronic health conditions, and in the experiences of their families (Table 36-1). In addition to those issues they share, important differences in characteristics of children themselves, of parents and families, and of their specific health conditions have considerable effects on the experience of having a chronic condition (Table 36-2).
A. Characteristics of children.
1. The age at which a child develops a chronic health condition and the child’s age at any particular time, independently contribute to the child’s experience of the condition
and the particular issues associated with its management (Table 36-3). For example, congenital conditions generally are associated with greater resiliency than conditions whose onset is during early adolescence.
Table 36-1. Issues common in the presence of chronic health conditions
For children
Limitations in usual childhood activities because of the condition itself and medical care requirements
Need for medications, other treatments
Experience with doctors, nurses, and other providers
Pain and discomfort
Experience with hospitalization
Feeling different from peers
Loneliness
Worry about the future
Dependency, loss of control
Stigma
For families
Extra burden of care
Financial drain
Interactions with complex medical system
Multiple doctors, nurses, and other professionals
Restricted social networks
Difficulties with childcare, short and long term
Special requirements of school
Necessity to inflict pain and discomfort
Interference with needs of other family members and of family system
Worries about long-term care, insurance
Uncertainty in daily life planning
Loneliness
Guilt
Anger
Stigma
Table 36-2. Factors affecting children’s experience of a chronic health condition
Characteristics of the child
Age of onset
Personality/temperament
Intelligence
Self-concept
Gender
Ethnic background
Developmental level
Understanding of illness
Locus-of-control beliefs
Characteristics of the family
Marital status
Number and ages of children
Parents’ education
Parents’ occupations
Financial situation
Strength of parents’ relationship
Parents’ self-esteem
Extended family support
Social support network
Ethnic background
Characteristics of the illness
Age of onset
Stable or unpredictable
Prognosis
Interference with mobility
Interference with normal activities
Visibility
Academic effects
Medications and other treatments
Intensity of care requirements
Discomfort
Nervous system involvement
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
Chronic Conditions
Chronic Conditions
Ellen C. Perrin
