A child's unhappiness, not diagnosis, most strains families
By Louise Kinross
Unhappiness and worry in children with disabilities is the most significant predictor of negative impact on family wellbeing—regardless of diagnosis—according to a study published last month in the Journal of Intellectual Disability Research.
Over 200 Canadian parents of children with disabilities like autism, cerebral palsy and intellectual disability filled out surveys about their child’s function, behaviour and emotions, and how it influenced the family. The children, in Alberta, Ontario and Quebec, were aged four to 13.
Despite parent perceptions that their children had more serious problems in areas like peer relationships or inattention, “it is children’s worries, fearfulness and general unhappiness that is most impactful on the family’s ability to maintain their social, financial and personal well-being,” the authors write.
Parents assessed negative impacts of the disability on the family related to “increased time and financial demands” and “disruptions in family routines, social isolation and decreased emotional well-being.”
BLOOM interviewed Lucy Lach, an associate professor in the School of Social Work at McGill University, who co-authored the study with Dr. Emily Gardiner at the University of British Columbia. Kids Brain Health Network funded Emily's postdoctoral research. Emily used a data set developed by Parenting Matters, a team studying what it means to parent kids with disabilities. Parenting Matters was funded by the Canadian Institutes of Health Research and Holland Bloorview Kids Rehabilitation Hospital Foundation.
BLOOM: Why was there a need for this study?
Lucy Lach: Emily, who is the lead investigator, is interested in tackling this issue of the value of categorical vs. non-categorical research. Categorical research is diagnosis-specific, and non-categorical research cuts across diagnoses. From a research perspective, there’s an ethical dilemma about funding being allocated only to specific disorders.
There’s a whole industry of conferences and journals dedicated to autism and cerebral palsy and epilepsy. But other disorders—particularly as we get more fine-tuned in locating genetic disorders—are so tiny, that their voices get excluded.
Non-categorical research allows parents to find shared experiences—not because of their child’s diagnosis—but because of similar functional impairments. This is research that can benefit all families.
BLOOM: What were the key results?
Lucy Lach: There were three key variables that came out as significant predictors of how negatively parents appraise the impact of a child’s disability on the family. The most significant was higher emotional symptoms. These refer to fearfulness, worry, sadness and withdrawal. The other two predictors were lower social skills and lower practical, daily-living skills.
BLOOM: What kind of emotional problems were you looking at?
Lucy Lach: These are internalizing behaviours like fearfulness, sadness and being downhearted. They’re often invisible. With externalizing behaviours like aggression, conduct problems and combativeness, it’s something very physical, and you know it when you see it.
A child who is more withdrawn, or fearful or sad, may be interpreted as a child with a quiet nature, or a child with a lack of motivation. They’re not disruptive, and they’re less likely to come to the attention of teachers. Unless a parent is worried about their child’s emotional state, it’s not likely that clinicians will pick up on it.
The results are far-reaching because they suggest that when a child is unhappy, not only is it the worst feeling for the parent, but it has a negative impact on the entire family.
BLOOM: Was that a surprise?
Lucy Lach: I would not have predicted this result. I would have thought that a child’s aggressive behaviour, rather than emotional problems, would have the highest degree of negative impact. People don’t realize how important a child’s emotional life is.
I remember when I was doing my work with children with epilepsy, we were paying attention to aggression, because it’s so disruptive in the classroom and with peers and family. But we weren’t at all paying attention to fearfulness and sadness.
BLOOM: What can clinicians take from this?
Lucy Lach: I think the assessment of fearfulness and sadness and worry is really important in clinical practice. We know from the literature that parents are much better judges of their child’s externalizing behaviour.
Kids themselves are a better judge of their internal state because they’re more tuned into it. So clinicians need to use measures that include emotional symptoms and—to the extent possible—have the child complete them.
BLOOM: So it would be important for children who are non-verbal to have another way to identify their feelings?
Lucy Lach: I used to use cards with faces on them, and ask kids to point to the one that shows how you feel inside, how you feel in your heart.
Clinicians need to assess, assess, assess, and develop programs that address emotional symptoms in kids.
If you want to help families be less negative in their appraisal of the impact of their child’s disability, develop programs that target a child’s emotional well-being and social skills.
BLOOM: We know that parents of children with disabilities have higher rates of depression and anxiety. Does the study in any way tie a child’s emotional problems to a parent’s emotional state?
Lucy Lach: No, we can’t extrapolate that. We could do a separate study with the same data to look at whether a child’s emotional problems are predictive of parent depression and anxiety.
BLOOM: The study notes that children’s functioning within a diagnosis often varies greatly. And that it’s better to target interventions to similar functional problems across diagnoses. This fits with a move here at Holland Bloorview to ‘personalize pathways,’ so that a child receives services to meet their needs vs. their diagnosis. But that’s not the way children’s rehab has traditionally been set up, is it?
Lucy Lach: Absolutely not. That will be hard. We have clinics that are specific to diagnoses, journals specific to diagnoses and conferences specific to diagnoses. The world is structured by diagnosis.
BLOOM: In the section on limitations of your study, it says that the Family Impact of Childhood Disability Scale you used has positive and negative subscales, but this study focused on negative experiences. So, in addition to the negative impact of a disability on a family, there are also items looking at positive impact. Is there anything positive parents can take from the study?
Lucy Lach: Yes. The idea that parents simultaneously hang on to positive and negative aspects of the impact. We need to inquire, and help families build, their narrative around how having a child with a disability has had a positive impact on their family. It’s not a narrative that they’re invited in to frequently. We should be asking the question: ‘Tell me about how your child’s disability has had a positive impact on the family.’
