‘Helicopter parents’ need as much support, guidance as kids with IBD

ORLANDO, Fla. — A child’s diagnosis with inflammatory bowel disease affects not only the patient, but the parents as well, and those parents, especially “helicopter parents,” should not be forgotten when managing the patient’s care, according to presenters at Advances in IBD 2017.

“If there’s anything you get from this, it’s helping the parents cope helps the child cope,” Maureen M. Kelly, RN, MS, CPNP, from the University of North Carolina, said during her presentation. “That is a very, very strong prediction of quality of life outcomes for not just the adolescent patient, but also the younger patient as well.”

Kelly showed that there is more family dysfunction when a family member is diagnosed with IBD than with diabetes or as compared to healthy controls. But, she said, when parents are taught how to cope, they can better support their children.

“The more parental support there was, the more the parent-child relationship was strengthened,” Kelly said. “It was important to how IBD was viewed and experienced. If parents develop a woe-is-us attitude, ... then of course the child or adolescent is not going to have as positive a view as they might.”

Additionally, the nature of the ‘helicopter parent’ to take charge of their child’s disease and visits does not allow for a pediatric patient to gain the independence necessary for their transition to adult care, Pamela J. Morgan, BSN, RN, from Dayton Children’s Hospital, said during her presentation.

Morgan said that to address the family unit and both incorporate parents but empower the patient, their program has an “orientation day” where all of the providers are present.

“They meet because we need to have a unified presence, that this is a team and this is how we are going to work together,” Morgan said. “We have a social worker, psychologist, financial advocate, doctor, nurse, dietician and everybody talks about their role, how they will be interacting with each and every visit with this family, and start talking about the transition and helping for the whole family to learn the disease.”

As the patient grows and begins to learn the management of his or her disease, Morgan said the parents must be guided as much as the patient.

“We start very slow, very nurturing and very casually,” she said. “Really reinforce at each visit ‘the why’ we are investing in it, investing in the child learning their disease and investing in the parents.”

In preparing the patient to be fully independent, Morgan said they encourage the patient to speak at appointments rather than the parent and then they set parameters for the next visit where a patient will see the provider alone, inviting the parent in after the initial consult.

“By the time they are getting ready to go off to college, they know what to expect. The families become much more comfortable with that separation,” she said.

Both Morgan and Kelly emphasized the need for support systems not only for pediatric patients, but for their parents as well.

“If the parent is not coping well, the child is not coping well, no matter what. It might be more important to do a coping assessment on the parent rather than the child,” Kelly said, though she admitted there are few resources for the parental assessments.

“It takes a lot of energy. It takes a lot of time,” Morgan said. “We have to have support in place for both the patient and the parent. Sometimes the patient needs it more, and a lot of times the parent needs it more.” – by Katrina Altersitz

Reference: Kelly MM. Session IVB: Interprofessional IBD Patient Management. Presented at: Advances in IBD; Nov. 9-11, 2017; Orlando, Fla.

Morgan PJ. Session VB: Case Presentations and Interactive Discussion. Presented at: Advances in IBD; Nov. 9-11, 2017; Orlando, Fla.

Disclosures: Kelly and Morgan report no relevant financial disclosures.