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Research explores fatigue factor for parents with children that have autism spectrum disorder

By Costa Maragos Posted: December 4, 2016 4:00 p.m.

Sarah Elizabeth Ivens is a PhD student in clinical psychology.
Sarah Elizabeth Ivens is a PhD student in clinical psychology. U of R Photography

Sarah Elizabeth Ivens remembers first witnessing the challenges faced by parents who have children with Autism Spectrum Disorder.

Ivens, who is a PhD student in clinical psychology at the University of Regina, recalls her experiences in Victoria B.C where she worked one-on-one with children with autism.

“I got to know the children but I also got to know the families. I saw them trying so hard to do the best for their kids, trying to balance this with everything else they have to do. Sometimes it was tiring just to watch them. They have a lot to manage. I can understand why they often feel fatigued” says Ivens.

That experience in Victoria got Ivens interested in the challenges faced by parents of children with autism. She recently examined their experiences for her Master’s thesis.

Her thesis is titled “Fatigue in parents of children with Autism Spectrum Disorders: The role of parental and child factors for mothers and fathers”.

“Fatigue is a sense of exhaustion that cannot be cured by rest. It affects your mental and physical capacities. Parents with kids with autism tend to have higher levels of fatigue than parents raising typically developing children,” says Ivens, who completed her honours in Psychology at the University of Victoria.

“Yet so much of the research out there focuses on fatigue of mothers of young children who are typically developing. Parenting research in general tends to focus on understanding the mother’s experience. We have a much more limited understanding of the father’s experience.”

Ivens surveyed 78 mothers and 34 fathers from across Canada. The age range of the children was 2 to 12 years old.

Here’s what she’s found.

There are similarities in the fatigue model of mothers and fathers. Their general health rating was generally associated with their fatigue level. The healthier the parents are, then the less fatigued they are. This applies to both mothers and fathers.

Both parents also reported high levels of psychological distress, poor sleep quality and they also reported that their children had poor sleep habits.

There are differences as well.

"For mothers, psychological distress was predictive of fatigue levels but for fathers it was caregiver burden,” says Ivens. “By caregiver burden we mean the subjective impact on one’s life due to parenting this child”

These two variables were associated with each other for mothers, but not for fathers.

“This suggests that mothers and fathers may be experiencing these constructs differently," says Ivens.

Ivens notes such research is appreciated by the parents surveyed.

“Some of them thanked us for giving them a chance to talk about their experiences. Several of them mentioned personal stories about feeling overwhelmed but at the same time they talked about how much they loved their children and enjoyed raising them. They talked about how being a parent is a challenging but rewarding role," she says.

Ivens says there’s a need to do such research and understand the autism experience for a wider range of parents.

As for her research, she is now working on the manuscript with hopes of getting it published.