Kids Brain Health Network: Understanding Families’ Experiences, Why a Diagnosis Doesn’t Tell the Whole Story

In the early 2000s, Sharon McCarry was a globe-trotting Fortune-500 marketing director working ten to 12 hours a day. When her second child, Colm, started showing developmental delays during his first year, it was the beginning of “a life that was different, in every single aspect,” she says.

McCarry, who lives in Montreal, left behind her demanding job to free up time for advocating and caring for her son. “I flipped some houses to help pay the bills, but my focus was on trying to figure out what was happening with him and how I could help him,” she says. “It was stressful not knowing what was going on.”

Disagreements between McCarry and her common-law partner over the nature and extent of Colm’s needs contributed to their eventual breakup and estrangement. Meanwhile, Colm’s behavioural issues, which included physical tantrums and kicking, were getting in the way of taking him out, even for routine errands such as grocery shopping. “I couldn’t find a babysitter for him, so my parents came over to help a lot. It was all hands on deck,” McCarry says. “At first, my girlfriends continued to invite me out to classes or events. I remember being grateful that they were trying to get me involved in stuff, but I simply couldn’t afford the time.’” Colm was just three years old when he was finally diagnosed with autism-spectrum disorder (ASD), but his disability had already impacted his family’s finances, emotional health, social networks, routines and relationships.

“Family impact” is a measure that researchers use to quantify the effects—positive or negative—that a family experiences as a result of an event, policy or situation. When it comes to understanding the impact of caring for a child with a neurodisability, considering the child’s diagnosis can be helpful, but it doesn’t necessarily paint a complete picture of the family members’ lives and challenges.

“We typically work with the idea that children with ASD present a certain way, that those with global developmental delay (GDD) present a certain way and so on,” says Dr. Emily Gardiner, a researcher affiliated with the Department of Pediatrics at the University of British Columbia. “But if you think about functioning—things like social skills, communication ability or cognitive ability—there’s actually quite a lot of overlap across disorders, and differences within the same disorder.”

From 2014 until 2017, Gardiner’s postdoctoral research was supported by KBHN and BC Children’s Hospital Research Institute. Together with two experienced investigators, Dr. Anton Miller of BC Children’s Hospital and Dr. Lucyna Lach of McGill University, she’s currently producing a series of research papers exploring differences and similarities between the functional profiles of children with various neurodisabilities. “We’re trying to question our expectations about the kinds of challenges that kids and their families may have,” she says.

Measuring Family Impact

Gardiner, Miller and Lach’s latest publication, “Family Impact of Childhood Neurodevelopmental Disability: Considering Adaptive and Maladaptive Behaviour,” was published in the Journal of Intellectual Disability Research in October. In it, they looked at how a child’s specific set of abilities, disabilities and behaviours affects their family. They do so by analyzing data provided between 2011 and 2014 by over 200 parents and caregivers of children with neurodisabilities. The diagnoses represented in the group included ASD, cerebral palsy (CP), global delay and Down syndrome, among others.

The participants answered questionnaires designed to capture their impressions of their children’s difficulties and skills. The questions included, for example, “Does the child have at least one good friend?” “Do they often lose their temper?” and “Are they often fidgeting and squirming?” They also provided information about how they felt that their child’s neurodisability was affecting their families, positively and negatively.

Gardiner and her co-authors crunched the numbers to see which aspects of the children’s functioning were the most clearly and strongly associated with perceived family impact. The kids’ diagnoses didn’t help to explain any differences that weren’t already explained by functional factors.

One of the implications of this finding, Lach says, is that services intended to improve family impact need not be diagnosis-specific. “For instance, if you wanted to set up a group to increase parent-to-parent support, you wouldn’t need separate ones for ASD, GDD, CP and so on. If you bring those parents together, they’ll find they have a lot in common.”

Similarly—although it’s a topic that falls outside the scope of this particular research paper—many people are interested in seeing more treatments and services that cut across diagnostic boundaries to target specific functional challenges such as emotional regulation or speech difficulties. “Non-categorical interventions,” as they are called, were one of the top-10 priorities chosen by nearly 700 stakeholders from across the country in an online survey conducted by KBHN in 2017.

One of the advantages of non-categorical interventions is that they can be made accessible to families of children who are hard to categorize or who don’t yet have a formal diagnosis. “It can take a long time to get a diagnosis,” Gardiner says. “Families who don’t have one are facing a lot of the same functional challenges as those who do, and they’re often left without a defined pathway to support.”

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