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The Child Advocate is devoted to children and the parents and professionals that work with them and advocate for them.  Understanding disease processes has long been a problem for children. This information is presented with the permission of Jay Parkinson of The Penn State College of Medicine.  The information presented at this site is for general use only and is not intended to provide personal advice or substitute for the advice of a qualified professional.  If you have questions about the information presented here, please consult a physician, the resources listed or other professional in your area.

Children’s Understanding Disease Processes

Contributed by Jay Parkinson

 Penn State College of Medicine

  1. Introduction
    1. Knowledge about how kids come to understand disease processes, cause, and prevention is needed to help healthcare workers treat and interact with their pediatric patient population.
    2. The main reason this is necessary is to facilitate effective communication between someone of high understanding to a child with very minimal (or rather, skewed) understanding of disease.
    3. There seems to be a major problem in the way pediatricians interact with their patients.
      1. For instance, one study found that 79% of all pediatricians believe that their training in child development is inadequate.
      2. The same study found that only 30% of pediatricians believe that they are very confident in their assessments of normal development.
  • Secondly, another study reported that clinicians in general expect more of younger children than they are capable of understanding and that clinicians expect too little and perhaps talk down to children over 10 or 11 years old.
  1. These studies also concluded that physicians and nurses make little use of the notion of developmental stages and approach all children more or less as if they were in middle childhood, or in the Piagetian stage of concrete operations.
  2. There is evidence that children can understand and synthesize what adults say only if it is appropriate to their level of cognitive sophistication within a fairly narrow range.
  3. If it is too elementary, it is dismissed
  • If it is too complex, it is distorted or discarded.
  • We can only assume from these studies that clinicians for the most do not operate with an intuitive sense about cognitive development
  1. Therefore, my intent is to educate you all on the cognitive development of children’s understanding of illness and give some examples of how your conversation with children of different ages can be tailored to their level of understanding.
  2. And I will start by briefly explaining Piaget’s stages of cognitive development in a child.
  1. Piaget’s stages of cognitive development in a child.
    1. Children’s thinking proceeds through a discrete series of stages characterized by qualitatively different cognitive structures
      1. Sensorimotor
        1. birth to about 2 years
        2. infants acquire knowledge through sensory experience and motor activity
        3. change from babies who respond primarily through reflexes and random behavior into goal-oriented toddlers
      2. Preoperational
        1. approximately 2-7 years
        2. aware only of their immediate environment
        3. thought remains empirical rather than logical
        4. They can see only one aspect of a phenomenon at a time and ignore the whole of the situation.
        5. find no conflict in circular reasoning
        6. cannot generalize from one experience or observation to another similar one
        7. they differentiate poorly between themselves and the outside world.
        8. therefore, they do not spontaneously conceptualize the internal parts of the human body
  • Concrete Operational
    1. age 7-12
    2. major difference is the emergence of a clear differentiation between himself and others
    3. understand more than one dimension of a situation
    4. can see a phenomenon from multiple angles and with transformations
    5. can still only understand phenomena he sees in the real world and not hypothetical situations
    6. can distinguish what is internal and external to themselves
    7. use elementary logic to solve problems
    8. allows them to understand the relativity and multiplicity of cause and effect relationships, and to conceptualize their reversibility
  1. Formal Operational
    1. 12 years old at the earliest to adulthood
    2. transcend concrete here and now experiences
    3. begin to think hypothetically and abstractly
    4. fill in gaps in their knowledge with generalizations from prior experiences
    5. differentiate from themselves and the external world
    6. imagine the alternatives possible in a phenomenon or situation.
    7. allows them to understand illness in terms of internal physiologic structures and systems whose dysfunction can be manifest by a variety of external symptoms
  • How does this translate into a child’s development of the concept of illness?
    1. A few studies have been done to look into this and they all have revealed consistent findings that correlate very well with Piaget’s defined cognitive stages.
    2. Prelogical Explanations
      1. Immanent Justice
        1. this is the belief that illness results from wrongdoing
        2. For example, hospitalized children often ascribe the cause of their illness to disobedience of parental commands and interpret their hospitalization as rejection or punishment.
        3. Research shows that this theory is utilized for ailments with which the child has limited personal experience and for which another explanation is not readily available.
        4. But, even preschoolers will abandon this theory as an explanation when they have had personal experience with a certain ailment while retaining the theory for other ailments with which they have had no experience with.
      2. Phenomenonism
        1. cause of illness is an external concrete phenomenon which may co-occur with the illness but which is spatially and temporally remote.
        2. “How do you get colds?” —- “From the sun” — “How does the sun give you a cold?” —- “It just does that’s all.”
  • Contagion
    1. most common explanation of illness offered by the most mature children in the Prelogical stage
    2. cause of illness is located in objects or people which are proximate to, but not touching, the child
    3. link between the two is mere proximity or “magic”
    4. “How do you get colds?” — “From outside” — “ How do they get them from outside” — “They just do that’s all. They come when someone else gets near you.” — “ How” — “I don’t know, by magic, I think.”
  1. Concrete-Operational Explanations
    1. Contamination
      1. the child now distinguishes between the cause of the illness and the manner in which it is effective.
      2. cause is viewed as a person, object, or action that is external to the child
      3. this cause effects illness in the child either through the physical touching or through the child physically engaging in the harmful action and thus becoming contaminated.
      4. “What is a cold” — “It’s like in wintertime” – “How do people get them” – “You’re outside without a hat and you start sneezing. Your head would get cold – the cold would touch it and then it would go all over your body.”
    2. Internalization
      1. offered by the most mature children of the concrete logical stage
      2. illness is now located inside the body, while its ultimate cause may be external
      3. linked by a process of internalization usually by swallowing or inhaling
      4. even though the illness is located inside the body, kids offer their descriptions in vague, nonspecific terms, evidencing confusion about internal organs and functions
      5. “What is a cold?” – “You sneeze a lot, you talk funny, and your nose gets clogged up” – “How do people get colds” — “In winter, they breathe in too much air into their nose and it blocks up their nose” – “How does this cause colds?” – “The bacteria gets in by breathing. Then the lungs get too soft and it goes to the nose” – “How does it get better?” – “Hot fresh air, it gets in the nose and pushes the cold air back.”
    3. Formal-Operational Explanations
      1. Physiologic
        1. although the cause may be triggered by external events, the source and nature of the illness lies in specific internal physiologic structures and functions
        2. normally described as the nonfunctioning or malfunctioning of an internal organ or process, explained in a step by step process culminating in illness
        3. “What is a cold?” — “It’s when you get all stuffed up inside, your sinuses get filled up with mucus. Sometimes your lungs do too and you get a cough” — “How do people get colds?” — “They come from viruses I guess. Other people have the virus and it gets into your bloodstream and it causes a cold.” — “Have you ever been sick?” — “Yes” — “What was wrong?” — “My platelet count was down?” — “What’s that?” —“In the bloodstream they are like little white blood cells, they help kill germs” — “Why did you get sick?” — “There were more germs than platelets. They killed the platelets off.” — “How did you get sick?” — “From germs outside. They killed off the platelets.”
      2. Psychophysiologic
        1. offered by the most mature kids in the formal operational stage
        2. illness is described in terms of internal physiologic processes, but the child now perceives an additional or alternative cause of illness – a psychological cause.
        3. “What is a heart attack?” – “Its when your heart stops working right. Sometimes its pumping too slow or too fast.” — “How do people get a heart attack?” — “It can come from being all nerve-wracked. You worry too much. The tension can affect your heart.”
      3. As a corollary to developing a concept of illness, one study has looked at the development of children’s belief’s about the intent of medical procedures and the role of healthcare personnel.
        1. Three stages of development
          1. Stage 1 correlates with the Preoperational Stage
            1. medical procedures were done to punish them for being bad
            2. seen in all 5 and 6 year olds in the study but in none of the kids age 7 or over.
          2. Stage 2 correlates with the Formal Operational Stage
            1. the child can accurately infer the beneficial intention of the medical procedures but say that doctors and nurses only know if a child is in pain if the child screams or cries
  • Stage 3 correlates with the end of the Concrete Operational Stage and the beginning of the Formal Operational Stage
    1. children can infer both intention and empathy
    2. kids said that their doctors and nurses knew how they felt because of shared human experiences and because they could put themselves in the child’s place.
  1. Conclusions
    1. How can all of this information help us interact with our pediatric patients?
    2. I believe the first item to consider is really studying Piaget’s stages of cognitive development and always attempt to place yourself in not only the child’s cognitive shoes but also the child’s emotional shoes.
    3. Staff members must find out precisely how the child views the cause of his illness and the reasons for treatment. When explanations are given, they must take the child’s conceptions into account, guide them gently through the ideas that are new to him and attempt to match his level of comprehension.
    4. At the same time, one author noted that the well-informed patient is not always the well-adjusted patient.
      1. He concluded that a change in family interactional patterns, rather than continual reeducation, was probably of greatest help to children who were doing poorly.
    5. Also, the assumption that medical staff members need to correct the child’s distorted ideas and deal with the egocentric and magical feelings needs to be examined. One author postulates that egocentric belief serves as a coping mechanism and states it is never wise to break down defenses unless one is sure that more desirable concepts will take their place.
    6. We should also remember that at least until adolescence a child cannot be expected to:
      1. Associate a number of different symptoms as a unified illness or syndrome
      2. To understand the progression of his illness through different phases
  • Or to comprehend the logic of oral medication for a pruritic rash on his skin, for example.
  1. Therefore, with that in mind, utilizing your understanding of the Piagetian stages of cognitive development, you can hear or make sense of a child’s explanation of illness, and if the explanation is bothersome to the child, help to alter it.
    1. Two ways to do this:
      1. provide a somewhat different and less negative account of the illness within the same stage as the child’s original explanation
      2. offer the child an explanation characteristic of the next stage of cognitive development.
    2. For example
      1. dealing with a child who believes he got meningitis from a bug that bit him in his backyard state
        1. “I know about that bug, and it’s a special kind, and it only bites once.”
        2. Or if that is not acceptable, explain the illness to the child in the next stage of development (in this case it would be internalization):
          1. “the germ got inside your body, but also that the inside of the body makes special stuff to handle this germ, and once the stuff is made, it always stays in the body, so if the germ gets in again, the body is ready and this germ won’t make you sick again.
        3. But, in this example you would not try to explain the stuff or use words like resistance because that would be sufficient for a child at the next stage which is physiologic.
  • Last example (Preparation for surgery)
    1. Preoperational Stage
      1. Focus primarily on external observable events surrounding the surgery, for example, light in the operating room, nurses uniforms, etc => consistent with the child’s understanding of illness in terms of external observable events
    2. Formal Logical Stage
      1. Focus on the details of anatomy and what would be happening to the inside of his body => consistent with the physiologic stage who can conceptualize internal parts of the body as well as their functioning.
    3. Miscellaneous examples:
      1. When talking to a young patient about controlling pain, emphasize the connection between the medication taken orally and the relief of pain
      2. More concrete measures might be more assuring to the child such as the application of a heating pad for abdominal pain.
  • Also, in selecting oral medication, keep in mind the child’s cognitive abilities regarding comprehension of quantity and number
    1. For example, when increasing the amount of pain medication, give two 15 mg pills instead of one 30 mg pill
  1. Also, avoid giving IM pain medication realizing the child’s tendency to associate pain with punishment and to fail to comprehend the idea of inducing pain to treat pain.
  1. Remember:
    1. Children have their own conceptions of what has happened to them
    2. Their ability to assimilate the information is limited and they often distort what they are told
  • Other factors, unrelated to cognition, may have a greater bearing on their responses to treatment


Bibace, R. and Walsh, M: Development of Children’s Concepts of Illness. Pediatrics 66:912-917, 1980

Perrin, E. and Gerrity, S: There’s a Demon in Your Belly: Children’s Understanding of Illness. Pediatrics 67:841-849, 1981

Perrin, E.: Sticks and Stones May Break My Bones…Reasoning About Illness Causality and Body Functioning in Children Who Have a Chronic Illness. Pediatrics 88:608-619, 1991.

Perrin, E. and Perrin, J: Clinician’s Assessments of Children’s Understanding of Illness. Am J Dis Child 137:874-878, 1983

Kister, M. and Charlotte, J.: Children’s Conceptions of the Cause of Illness: Understanding of Contagion and Use of Immanent Justice. Child Development 51: 839-846, 1980.

Brewster, A.: Chronically Ill Hospitalized Children’s Concepts of Their Illness. Pediatrics 69: 355-362, 1982.

Lewis, C.: Increasing Patient Knowledge, Satisfaction, and Involvement: Randomized Trial of a Communication Intervention. Pediatrics 88: 351-358, 1991

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