Childhood chronic illness

Childhood chronic illness refers to conditions in pediatric patients that are usually prolonged in duration, do not resolve on their own, and are associated with impairment or disability. The duration required for an illness to be defined as chronic is generally greater than 12 months, but this can vary, and some organizations define it by limitation of function rather than a length of time. Regardless of the exact length of duration, these types of conditions are different than acute, or short-lived, illnesses which resolve or can be cured. There are many definitions for what counts as a chronic condition. However, children with chronic illnesses will typically experience at least one of the following: limitation of functions relative to their age, disfigurement, dependency on medical technologies or medications, increased medical attention, and a need for modified educational arrangements.
There are many different diseases affecting children that have a prolonged course and can lead to disability or impairment including asthma, sickle cell anemia, congenital heart disease, obesity, neurodevelopmental conditions, and epilepsy. Owing to improvements in public health and health infrastructure, infant and child mortality especially from infectious causes has decreased in most areas of the world. Therefore, children are living longer with chronic illnesses.
Epidemiology.
It is difficult to know the exact number of children who have a chronic illness worldwide. Given that there is no agreement on the definition for a chronic illness and that quality data from every country is not guaranteed, there is a wide range of estimates of prevalence and incidence. In the United States, one study noted the prevalence of chronic conditions among youth more than doubled from 12.8% in 1994 to 26.6% in 2006. One important trend to consider is that the overall number of children with chronic illnesses is increasing. This rise is likely due to decreased infant and child mortality from previously lethal diseases due to innovations in medication and other treatment as well as increased ability to diagnose and therefore discover chronic conditions.
Impact.
Family.
The presence of a child with a chronic illness in the home has multiple effects on the family's life as it may affect daily routines. One potential consequence is the physical space inside the home being altered by the need for home health or medical equipment. As such children typically require frequent appointments, caregivers can feel strain to participate in their other children's lives equally and may develop increased levels of stress and family discord. The time requirements could also increase social isolation from extended family members. Given the cost associated with the greater need for specialized treatments as well as decreased time to work, these families may also experience economic difficulties.
Development.
Chronic illness can affect a child's development at any stage. During infancy and childhood chronic illness can be detrimental to the development of secure attachment, interpersonal trust, self-regulation, and/or peer relation skills. During middle adolescence, chronic illness can prevent a child from being in school on a regular basis. This can affect a child's academic and social competence. During adolescence, chronic illness can affect the development of autonomy and self-image. It can also interfere with peer and romantic relationships, and the desire for independence can lead to poor treatment compliance. In terms of education, one study found that children in Australia with at least one chronic illness scored lower in five domains of educational readiness including social competence, emotional maturity and communication skills.
Management.
In general, taking care of a child with a chronic illness will require not one provider, but a team that may include medical providers, therapists and educators, and other caregivers. Coping with a chronic illness can challenge many aspects of life, and there are some therapies that can help children and their families adjust to their condition. Programs that focus specifically on parenting include increasing positive interaction between parent and child and better communication about emotions.
Behavior Therapy.
Behavior therapy in the setting of chronic illnesses aims to change learned behaviors that are problematic using classical conditioning and operant techniques. Some examples of behavioral therapy for children with asthma include stress management techniques and contingency coping exercises. In one study, the asthma patients randomized to such therapies demonstrated fewer behavioral adjustment problems. Additionally, systematic desensitization can be applied to children with illness to decrease the fear associated with some medical treatments that could be required of their condition such as imaging or invasive procedures.
Cognitive Behavioral Therapy.
Cognitive Behavioral Therapy (CBT) is one of the most common techniques used to build resilience in children suffering from chronic illnesses. CBT includes the practice of breathing exercises, relaxation training, imagery, distraction methods, coping models, cognitive coping skills, reinforcement for compliance, behavioral rehearsal, role-play and direct coaching. Another intervention that is gaining popularity is the PASS Theory of Intelligence. The PASS Model combines a multitude of interventions to create a well-rounded program to foster resiliency in not only the children but the families affected as well. The goals of the pass model are to minimize trauma symptoms, develop adaptive coping skills, strengthen resiliency, and connect families to support networks.
References.
Kerig, P., Wenar, C. (2005). Developmental Psychopathology: From Infancy Through Adolescence. New York, NY: McGraw Hill.
Morison, J.E., Bromfield, L.M., Cameron, H. J. (2003). A Therapeutic Model for Supporting Families of Children with a Chronic Illness or Disability. Child and Adolescent Mental Health, 8 (3), pp. 125–130.