Researchers develop guide to help doctors inform new parents about brain injury
Linda Givetash, The Canadian Press
Published Sunday, December 4, 2016 3:10PM EST
When Lisa Pasquariello took her son to the doctor with concerns he was behind on reaching important developmental milestones like talking and walking, she was told he was "definitely FLK" -- a funny looking kid.
Pasquariello said she was confused, shocked and insulted by the doctor's comments, but once the emotional trauma subsided she was able to work with the physician and have genetic testing conducted. The toddler was diagnosed with a rare gene deletion and was ultimately able to get the therapies and treatment he needed.
To prevent other parents from having an experience like Pasquariello, researchers with the Kids Brain Health Network have developed a framework to help clinicians reconsider how they manage conversations about diagnosing a child with suspected brain injuries or neurological disorders.
Eric Racine, a neuroethicist at Montreal Clinical Research Institute who led the study to develop a framework, says these conversations are challenging and the way a prognosis is discussed can widely vary depending on the personal biases and experiences of both the clinicians and patients.
Racine says many factors including age, gender and religious beliefs influence how a clinician tells a parent that their child has a brain injury. Parents' reactions are also influenced by their unique perspectives, and some are better at coping with "bad news" than others.
To account for this diversity, Racine organized a task force of clinicians from different areas of medicine and parents to provide input on the study.
The result is the "ouR-HOPE" framework being published Monday in the Developmental Medicine and Child Neurology journal.
The framework calls on clinicians to reflect on their practices, consider their level of humility and open-mindedness, and engage and work in partnership with the parents of patients.
Racine said he opted to create a self-reflection guide rather than strict rules about how to deliver a diagnosis because every case is unique.
"There is probably no one-size-fits-all for the kinds of answers to give," he said.
Dr. Steven Miller, a neurologist at SickKids Hospital in Toronto who contributed to the study, said rather than having created an impersonal rule book, the self-reflection model encourages clinicians to adapt their approach for each individual.
"It's saying you really need to get to know the family to know what's going to help them most," he said.
Doctors sometimes struggle with delivering a prognosis because not every situation is clear cut, he said.
What the study helped reveal is that parents want an honest answer and want to be told by their doctors that they're uncertain about their child's health.
Racine said he hopes this research sparks conversations at clinics and practices about the ethical implications of how a diagnosis is delivered.
"If the child is labelled very negatively, that can really be damaging I think," he said. "It could have implications for even something as important as the attachment to the child."
Donna Thomson said soon after her son was born he showed signs of a brain injury, and doctors told her to think about having other children and not "sacrificing" her life to raising a child with a disability.
"We weren't really sure what we were supposed to do and I felt really afraid because he had these significant health conditions, I wouldn't be able to look after him properly," she said.
That was 28 years ago, and Thomson said her family did not allow the doctor's discouragement stop them from loving and raising her son.
Thomson has become an advocate for people with disabilities and was among the parents who contributed to the ouR-HOPE framework.
"My hope is that it will give the tools and the confidence to a new generation of doctors coming up in the system to be able to have the kinds of conversations with parents and families that families need in those first days to able to care for their children," she said.