Caring for Children with Chronic Conditions and Their Families

chapter 20 Caring for Children with Chronic Conditions and Their Families





Providing the best possible care for a child with a chronic illness or disability calls for special skills if you are to be of maximum assistance to the child and family. While writing this chapter, I realized that those best equipped to speak with authority on this topic are the parents of children with chronic conditions and sometimes the youngsters themselves. Their years of firsthand experience, often dealing with multiple caregivers in and out of the hospital, have left them with vivid memories of the clinical encounters that served them well and those that left them unhappy or dissatisfied. I have quoted the following people directly whenever it seemed appropriate:







First Disclosure of the Diagnosis to Parents


The basic competencies required for initial disclosure of the diagnosis of a chronic condition are essentially the same, whether the child happens to have cystic fibrosis, a congenital anomaly, cerebral palsy, Down syndrome, diabetes, or any other serious chronic condition. Physicians and students vary considerably in their level of comfort when faced with the task of disclosing to parents a serious diagnosis and its implications. Some cannot wait to get the interview over with, therefore without realizing it, talk too fast, allowing little time for interruptions or questions. Others betray their personal discomfort by talking around the real issues. From a parent’s perspective, however, nothing makes the interview more unsatisfying and unhelpful than haste or circumlocution.


Carol Young: “Not every doctor has the comfort to sit down and talk to parents…but honesty up front is the most important thing.”


Donna Thompson (recalling how she and Ian first learned that their child had cystic fibrosis): “He [the doctor] had an intuitive sense of how much we could absorb at one time, so he had a paced way of delivering the information.”



Several careful investigations have identified the specific factors that determine the parents’ level of satisfaction or dissatisfaction when they recall how their child’s diagnosis was first disclosed to them. Their observations provide a very clear picture of “do’s” and “don’ts.” The key components that determined whether parents remembered that conversation with appreciation or with rancor were:








Emphasizing the positive


It is a lot easier for a parent to absorb and accept distressing news about a child when it is presented in a context that not only includes but also emphasizes the child’s positive attributes. The physician who opens the conversation “cold” with the bad news or focuses overwhelmingly on the negative or difficult aspects of the child’s condition may inadvertently seem, in the eyes of the parents, to devalue the child. Such a message is guaranteed to induce anger, depression, or both.


Variations in individual styles of delivering bad news may reflect personality differences among caregivers. Each of us has our own unique personal endowments of optimism and pessimism, and the balance between the two may condition both our style of communicating bad news and the parents’ reactions to hearing it. To illustrate this point, I sometimes ask medical students to indicate through role-play how they would deal (in actual language) with the following not-so-hypothetical situation:


“You have just carried out your initial examination of a newborn boy and discover that he has several major congenital anomalies. You consult an authoritative reference book on dysmorphic syndromes and learn that this particular condition carries a 5% risk of recurrence in subsequent children. What exactly do you say to the parents when they ask you about the recurrence risk?”


Some students reply that they would “tell them the truth,” meaning that they would inform the parents that there was a 5% risk that the condition would reappear in a subsequent child. By contrast, others say they would begin by telling the parents that there is a 95% chance that any subsequent child would be completely normal, only then indicating the 5% recurrence risk. Mathematically, both approaches are equally accurate, but the impacts of the two styles of communication on the parents can be diametrically opposite.


By the same token, when starting an interview for the initial disclosure of a child’s chronic condition, be it Down syndrome, a dysmorphic syndrome, or any other chronic condition, always open the conversation with comments that highlight the child’s positive attributes. Also, you should always, but always, refer to the child by name, never as he, she, or the baby. For example, you could start by saying, “I’ve examined Mary Ann. She is a lovely girl and her general health appears to be good. But she does have a problem I’m concerned about.” At this point, as you reveal the specific reason for your concern, the conversation should immediately become a two-way interchange, during which you pause regularly to encourage the parents to ask questions. Never allow your disclosure to turn into a speech.



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Jul 3, 2016 | Posted by in PEDIATRICS | Comments Off on Caring for Children with Chronic Conditions and Their Families

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