What is a chronic condition?
All children will likely have many different health problems during infancy and childhood, but for most children these problems are mild, they come and go, and they do not interfere with their daily life and development. For some children, however, chronic health conditions affect everyday life throughout childhood.
We’ll define a chronic health condition as a health problem that lasts over three months, affects your child’s normal activities, and requires lots of hospitalizations and/or home health care and/or extensive medical care.
Chronic condition is an “umbrella” term. Children with chronic illnesses may be ill or well at any given time, but they are always living with their condition. Some examples of chronic conditions include (but are not limited to):
- Asthma (the most common)
- Cerebral palsy
- Sickle cell anemia
- Cystic fibrosis
- Spina bifida
- Congenital heart problems
Even though these are very different illnesses, kids and families dealing with any chronic condition have a lot in common. Learning to live with a chronic condition can be very challenging for a child, for parents, and for siblings and friends. Read on for more information, support and resources.
How common are chronic conditions?
About 15% to 18% of children in the United States live with a chronic health condition (based on the definition we’re using). It’s hard to estimate, though, because it really depends on how you define “chronic condition.”
How might a chronic illness affect my child?
Children with chronic illnesses are more likely to experience frequent doctor and hospital visits. Some of their treatments may be scary or painful. Hospital stays can be frightening and lonely.
Children with chronic illnesses will feel “different” than other children. Their activities may be limited, and, in many cases, their families must change how they live to accommodate the child.
How do kids adjust to and cope with chronic illnesses?
The way children react to diagnosis with a chronic illness depends on several factors, including the child’s personality, the specific illness, and their family. One big factor is the child’s developmental stage. Kids’ understandings of illness and their coping strategies change as they grow older.
Here’s some information about how kids adjust at different stages:
- Infants and Toddlers are beginning to develop trust and an overall sense of security. They generally have very little understanding of their illness. They experience pain, restriction of motion, and separation from parents as challenges to developing trust and security. Parents can help by being present for painful procedures, staying with their children (when possible) during hospitalizations, and holding, soothing, and interacting with their baby as much as possible.
- Preschool Children are beginning to develop a sense of independence. They may understand what it means to get sick, but they may not understand the cause and effect nature of illness. For example, they may believe that throwing up causes them to get sick, rather than the other way around. Being in the hospital or adjusting to medication schedules can challenge the child’s developing independence. The child may try to counter lack of control over their world by challenging limits set by parents. Parents can help by being firm with things the child does not have a choice over (never ask “do you want to take your medicine now?” unless there’s really a choice—almost all children will say “NO!”), but by offering choices over flexible aspects of treatment. (For example, “Which to you want to take first, the pink medicine or the purple?” or “Do you want to sit on my lap while you have your blood drawn, or in the chair with me holding your hand?”) Parents can help their preschool child be resilient in times of stress. Here are some tips for helping young children learn to cope with stress. Find out more about resilience (page thorough to find the section on preschoolers).
- Early School-aged Children are developing a sense of mastery over their environment. They can describe reasons for illness, but these reasons may not be entirely logical. Children this age often have “magical thinking.” They may believe they caused illness by thinking bad thoughts, by hitting their brother, or by not eating their vegetables. Children also begin to sense that they are different from their peers. Parents can help by allowing children to help in management of their illness (with close adult supervision). They should also reassure their children that the illness is not their fault. Parents can help elementary school kids develop resilience in the face of a chronic illness. Find out more about resilience (page thorough to find the section on school-aged kids).
- Older School-aged Children are more capable of understanding their illness and its treatment, but they should not be expected to react as adults do. They may feel left out when they miss school or activities with their peers. Parents may feel the need to protect their children by restricting them from activities with other children. This is a natural reaction, but it can interfere with the child’s independence and sense of mastery. To the extent allowed by the child’s doctors, parents should help the child to participate in school or other activities. Find out more about resliliency in middle school kids (page through to find the section middle school kids).
Information and support can be empowering, and reading what other kids have to say can make a kid feel less alone. Here are some websites just for kids:
- Kidshealth.org has kid-friendly information on all kinds of health and illness topics.
- Bandaides and Blackboards for kids, is a site for kids with chronic illnesses or other medical problems.
- Adolescents begin to develop their own identity separate from their family. Self-image becomes extremely important during the teenage years. That can be a problem when the teen’s appearance is altered by illness or medication. Teens are also beginning to develop a real independence from their families. Parents who have been very involved in their teen’s care for many years may find it difficult to let go of their role as primary caregiver.
Many teens will go through times of denial of their illness when they may neglect to take medications, follow special diets, or check blood sugars. In addition, the adolescent’s body is rapidly changing, which may change the symptoms of the illness or the doses of medications needed. It is important to help the teen to gain control of their disease management. Keep in mind that even with chronic illness, teens are teens! Don’t forget to talk about issues facing all teens: independence, college planning, sexuality, substance abuse, etc.
There are some great websites just for teens:
- Teenshealth.org has information for teens on all kinds of health and illness topics.
- Bandaides and Blackboards for teens has stories, ideas, advice, and poetry.
- On Chronic Illness Resources for Teens, teens share their stories of their experiences.
- Resilience for Teens—Got Bounce? offers tips from the American Psychological Association for building skills that can help teens cope in tough times.