Care for chronically ill children may suffer when parents and doctors are at odds

AMES, Iowa – Holly remembers the day doctors diagnosed her son with cerebral palsy and told her he would need life-long care.

“It changes everything,” she shared in an interview with Katherine Rafferty, a lecturer in psychology and communication studies at Iowa State University. “Definitely changes our lifestyle and what we thought life was going to be like.”

Holly’s reaction echoes the feelings other parents of children with a chronic illness described during interviews Rafferty conducted for a study of how parents advocate for their child’s health care. Rafferty included comments from Holly (her name was changed to protect the family’s privacy) and several parents in a paper, published in the journal Health Communication, which aims to improve communication between parents and medical providers.

“Parents want to make sure their child’s getting the best care, and this research illustrates that a respectful, collaborative relationship between parents and medical providers is vital,” Rafferty said. “Both parties have knowledge, expertise and insight and must work together for the health of the child.”

Rafferty says parental advocacy takes on multiple dimensions that include finding the best doctors, building social networks, educating others about the illness and staying informed of the most relevant research and clinical trials. Parents often are thrust into the role, but see advocacy as their responsibility to ensure the best care for their child. To put it simply, advocacy is another duty that parents of chronically ill children must assume alongside daily life responsibilities (work, tending to other children), as well as new and unexpected responsibilities, such as tube feeding or coordinating appointments.

Of the 35 parents Rafferty interviewed, many talked about their fear, anger and uncertainty, as well as tense or adversarial relationships some had with medical providers. With some illnesses, especially rare genetic disorders, parents had never heard of or had little knowledge of the condition prior to receiving the diagnosis, she said. Not only did they feel pressure to educate themselves quickly, they also traveled across the country to get second opinions and meet with experts on their child’s condition.

“When you have a child with several medical needs, you’re going to be spending a lot of time with the health care team,” Rafferty said. “It takes some time to find the team that is well-equipped in terms of knowledge and expertise, as well as compassionate, considerate and willing to work with you.”

Knowledge is power

Parents regularly referred to their advocacy role as a second full-time job. Many spent hours seeking credible research about their child’s condition and treatment options. They also connected with online support groups or social networks to learn from other parents dealing with the same diagnosis, Rafferty said. She learned from parents that sharing information and receiving support was a critical part of advocacy.

Parents admitted that at times they felt helpless, vulnerable and unqualified, because of the complexity of their child’s illness. During their interviews, parents said staying informed and being an advocate was one thing they could do for their child when so many factors were outside of their control.

“One parent I interviewed said, ‘Ultimately, I make the decision. The health care providers are bringing me all the different options to consider.’ Not every parent knows or is aware of the fact that in the U.S. they have legal authority to make these decisions,” Rafferty said.

The case of Charlie Gard, a terminally ill British infant with a rare genetic disorder, is an example of the challenges some parents face when they have a tense or adversarial relationship with medical providers, Rafferty said. It illustrates why effective communication between parents and doctors is vital to ensuring the best outcome for the child.    

With rare genetic disorders or potentially fatal medical conditions, there are situations when parents are the most knowledgeable, Rafferty said. An emergency is one example. It’s possible some emergency room doctors will not be as well versed about the illness, as the parent has the longest continuity of care in that situation. Therefore, parents will need to work with the medical staff to avoid unnecessary risk for their child.

Improving communication

Rafferty says approximately one in five U.S. children will be diagnosed with a chronic illness, emphasizing the need for improved communication and collaboration. If parents’ wishes for their child’s treatment are not respected, it is not only the relationship between parents and health professionals that breaks down, but the child’s quality of care is likely to suffer as well.

The burden should not fall solely on the parents. Rafferty recommends health care professionals take the following steps to improve communication:  

• Build respectful, collaborative relationships – make sure parents have information they need and doctors respect parents’ knowledge and perspective
• Identify barriers for parents – financial issues and/or emotional state may limit parents’ ability to effectively advocate for their child; providers can connect families with appropriate services
• Serve as an advocate – at times it may be necessary for the medical team to educate teachers or other providers about the child’s condition or physical disability

Advocacy may also extend to educating teachers, family members or the community about the child’s illness and treatment needs, Rafferty said. Education helps others understand why a child may need special accommodations, as well as increases everyone’s comfort with caring for the child.

Shelbie Sullivan, a graduate student at Valparaiso University, contributed to this research.