Taking care of sick children can cause a lot of anxiety for parents. Not knowing what their children are thinking is part of the issue--how can you help them to feel better if you don’t know what their worries are? John Moses, MD, helps us to understand some of these issues.

-- Dennis Clements MD, PhD, MPH

One of the most stressful experiences for any parent is when their child becomes sick. Parents are challenged not only by the need to seek medical care for their child but also by doing what they can to ease their child’s physical and emotional distress during illness.

In an effort to help parents better relate to what their child may be experiencing when sick, this article explores some of the ways children may perceive their illness. Suggestions will be made as to how parents can help their children cope during periods of short or long-term illness.

As with many aspects of pediatric healthcare, a child’s perception of their illness is affected by their age and developmental level, as well as other factors such as their personality and temperament, prior experiences with illness as well as spiritual and cultural beliefs. Parents’ and healthcare professionals’ attitudes and practices can also influence how a child perceives illness.

All children regardless of age are capable of experiencing and being adversely affected by pain. Since pain is often a feature of illness, prompt and effective relief of pain can go a long way to helping ease a child’s fear of being sick. In addition to experiencing pain, it is reasonable to presume that all children, including young infants may perceive many other common symptoms of illness such as nausea or fatigue. It can therefore be appropriate for parents to try and imagine how their child may be experiencing a variety of physical symptoms and seek medical advice on how to ease those symptoms.

Parents are often tempted to reassure their children that procedures (such as shots) won’t hurt but this may backfire if there is any pain experienced. An alternate approach would be to tell a child that a given procedure will cause some pain but that it won’t be much (assuming pain-controlling medications are provided when needed).

As young children become verbal, they may try to use words to express their feelings related to illness. These verbal attempts to communicate about illness, while limited in complexity, should be respected by parents and healthcare workers. Children, regardless of age, need to have their expressions of distress acknowledged and validated. This can help enhance a child’s feeling of relative control during the stress of illness.

Beginning at about age four to five, children are better able to speak about their experience of illness and may be able to reliably describe particular symptoms such as throat or ear pain. This reflects the child’s emerging cognitive or brain growth and awareness of self.

Children may also be able to express their experience of illness through drawings or by making photographs. Visual images may help parents (and their doctors and nurses) better understand how children are coping with illness.

Children’s understanding of the cause of their illness becomes more accurate and sophisticated as they become older. For example, many children by the age of four to five years old will voice an understanding that a cold can be spread from one person to another but they are unlikely to be able to explain how this occurs biologically until they are at least nine to ten years old.

It is important that children regardless of age be reassured they are in no way responsible for getting sick. Children up to the age of about nine years old may mistakenly think that they are being punished when getting sick, especially if a hospitalization or procedure is needed.

Children may ask many questions about their illness as they try and construct a notion of the cause of their illness. Parents should be truthful in answering questions their child may ask them. If a child asks difficult questions such as, “Am I going to die?,” it is usually appropriate to be truthful while not overwhelming a child with too much information. Fortunately, there are skilled child-life and palliative care professionals who are available at Duke to help parents whose children are facing potentially life-threatening illness.

Most children possess the ability to adjust remarkably well to even serious chronic illness, if provided with ongoing reassurance and support by parents and health professionals. While children may naturally perceive illness as a negative event, it need not be a dominate aspect of their life. Children are remarkably resilient and are generally determined to live as full and positive a life as possible, even when dealing with illness. 

-- John Moses, MD, is a physician in primary care pediatrics and is actively involved in exploring various health and social issues through the perspective of documentary photography. He is currently working on a book that will present photographs made by children coping with chronic illness.

-- Dennis Clements, MD, PhD, is the chief of primary care pediatrics at Duke Children's Hospital & Health Center.