Patient care for children with intellectual disabilities can be improved: IWK research

Above watch: Research out of the IWK looks at patient care differences for children with intellectual disabilities and highlights how to improve and change the dynamic. Julia Wong reports.

HALIFAX – New research out of the IWK finds young patients with intellectual disabilities receive different care from those without but finds there are ways to improve the experience.

Brenna Bye, 13, was diagnosed with an intellectual disability when she was 14 months old. The Hammonds Plains teen has a partial duplication of chromosome 10Q. She is healthy and does not have behavioural issues but is developmentally several years behind her peers. For example, she may take a little longer when answering a question.

Brenna tells Global News that she feels nervous speaking with nurses or doctors during appointments at the hospital. She also said the staff sometimes act uncomfortable around her.

“If they don’t look at me, I feel really frustrated and I don’t know what I’m going to do,” she said.

“I want them to focus on me. [It would make me feel] happy and more responsible.”

Tweet This Click to share quote on Twitter: "If they don't look at me, I feel really frustrated and I don't know what I'm going to do," she said.</p><p>"I want them to focus on me. [It would make me feel] happy and more responsible."

Dr. Megan Aston, a nursing research at the IWK and a nursing professor at Dalhousie University, said there is often stigma and stereotypes when healthcare professionals work with children who have intellectual disabilities.

“People may be a little uncomfortable or fearful,” she said.

“Many people don’t have interactions with children with intellectual disabilities. It’s the unknown, so not knowing, you have some fears. It’s unintentional.”

Tweet This Click to share quote on Twitter: "Many people don't have interactions with children with intellectual disabilities. It's the unknown, so not knowing, you have some fears. It's unintentional."

Aston interviewed the experiences of nurses, parents and children with intellectual disabilities from 2010 to 2013 at the IWK.

Her findings revealed it is important for healthcare workers to spend more time with those patients and establish more of a relationship with them, rather than solely focusing on medical care.

“But they were telling us if you just take that time to learn and to talk and to work together, then they’re able to overcome those difficulties and those pieces of not knowing.”

Aston said nurses are trying to overcome that hurdle by communicating more with and observing the family.

“They would ask the parents ‘What does your child like and what is it that I can do to help?’ but also talking with the child and checking things out, such as ‘Is the child understanding me? Do I need to talk to them?'” she said.

“Once you have that relationship, people are a lot calmer and more relaxed. You can move forward together.”

Amanda Bye, Brenna’s mother, said it means a lot when frontline workers take the time to befriend Brenna and speak with her directly.

“She really wants to be involved in her own care and she has every right to be,” she said. “There’s a balance between trying to talk to Brenna and listen to her and politely looking at me saying ‘What did she say?'”

She said it is important for healthcare workers to be straight forward rather than worry about offending her daughter and wants them to get to know her daughter as a person rather than a rare genetic disease.

“It’s like the elephant in the room. This child has an intellectual disability and she has some issues. You need to learn how to deal with them so you can take better care of her.”

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