Caring for Children with Chronic Conditions and Their Families

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chapter 20 Caring for Children with Chronic Conditions and Their Families

Richard B. Goldbloom

The secret of the care of the patient is in caring for the patient.

FRANCIS PEABODY

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:

• Andrea is now an intelligent, articulate young woman, who has become a highly successful cattle breeder. She spent much of her childhood in hospital with severe, disabling arthritis, chronic uveitis, and, more recently, a rare, poorly understood muscle disorder. Both Andrea and her mother Ann have strong views about the clinical skills that make for effective, sensitive care.
• Carol and John Young: Years ago, Carol Young was a dedicated volunteer at a pediatric hospital. She began to care for Michael, an abandoned, desperately ill 3-month-old boy. Michael was blind from birth and had severe, chronic chloride-losing diarrhea. Carol and her husband John adopted Michael when he was 15 months old. Michael suffered from recurrent bouts of severe dehydration and was hospitalized repeatedly. Eventually his kidneys failed, and he received two successive renal transplants, both of which were rejected. Michael was kept alive with hemodialysis and long-term peritoneal dialysis, the latter carried out mainly at home by Carol and John, for 3 years. Despite superb care from his parents, supported by several specialists, Michael died when he was 11 years old.
• Donna and Ian Thompson: The Thompsons have raised two children, Robbie and Jane, both of whom were affected by cystic fibrosis. Both died as young adults. The Thompsons accumulated more than two decades of experience with health professionals and the health care system. They have been outspoken, effective advocates, nationally and internationally, to improve the care of children and adults with cystic fibrosis.

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.”

Key Point

It is virtually impossible for a clinician to disclose, and for parents to absorb, the full impact and implications of a diagnosis of a serious, chronic condition in their child. A good listener should sense when parents have had as much information as they can handle at an individual session. Usually, several sessions are needed for them to achieve full comprehension and a level of acceptance.

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:

1. Promptness
2. Honesty without abruptness
3. Emphasizing the child’s positive qualities

Promptness

Some parents have complained that “Everyone knew the diagnosis before we did.” Even when the news is bad, parents want to be told as soon as possible. When you cannot immediately establish a definitive diagnosis, parents usually accept the situation if you give them justifiable reasons for the delay. They simply want to know as soon as possible whether you have any concerns about their child, even if you are not yet sure of the exact nature of the condition.

Honesty without abruptness

Parents want the truth, but everyone needs time to absorb it and to come to terms with disturbing news. Parents who were dissatisfied with the manner in which their child’s diagnosis was disclosed to them have often pinpointed the abruptness with which the information was delivered or the apparent lack of compassion on the part of the messenger.

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.

Key Point

Always tell parents any bad news about their child’s health against a background of the child’s positive attributes.

Conducting the first interview

On the general principles outlined earlier, the following essential ingredients will make the first disclosure of a child’s chronic condition the least traumatic and as helpful as possible for the parents:

1. Both parents should be present. If only one parent can be present, a close relative or valued friend can provide important comfort and support. Other health care personnel should be present only if they have a specific role to play in the child’s care.
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