Putting the sibling back into the family

The role of brothers and sisters is often overlooked when it comes to family support for those with mental illness.

"When people think of family, they often think of the parents, not the siblings," said Liz Taylor, professor of occupational therapy at the University of Alberta's Faculty of Rehabilitation Medicine. "There's a lifelong impact on the healthy sibling living with the ill sibling-something we often forget."

The researcher conducted a narrative study on women who had a sibling with schizophrenia. She also spoke on the topic at the University of Alberta Calgary Centre Rehabilitation Seminar Series in mid November.

"The siblings wanted to be involved, but never got to be. Perhaps the parents were trying to protect them, but they told me they felt left out of the medical education the parents received," Taylor said. "And then when they're older, their parents are aging so they are the ones being asked to be caregivers, but they don't have all the information."

It is also common for the parents to focus on the child with mental illness over the others. Taylor explained that from the people she interviewed, a majority reported that they would feel left out so they'd cope by having achievements outside the home.

"Leisurely activities became a form of escape. The women in the study were highly successful and well-educated. They perceived themselves as helpers-some were health-care professionals themselves," Taylor said. "But they always felt they had to be even more successful and needed to achieve more."

An underlying theme was the inability to enjoy time with family.

"They felt they were unable to celebrate and that they had to put on an act that they were happy. One woman said to me, 'I feel like a fraud with my own children,'" she explained.

All of the women in the study were willing to accept that they would need to be caregivers to their siblings. "It wasn't a matter of 'I don't want to'; it was a matter of 'I don't know how to.' They just felt like they were doing it without any information," said Taylor.
She stressed the importance of letting the healthy sibling be involved early on, even at a young age.

"Health-care professionals need to know that family is more than just mom and dad. Everyone in the family needs to learn how to give support," she said. "As an occupational therapist working with families, I need to remind myself to include the siblings when I talk to families too."

Taylor is teaching her occupational therapy students how to be more inclusive in their future practice and get the whole family involved.

"I'd also like to see the future generation of parents demanding that all their children are involved. Teachers should also encourage healthy siblings to take part in being part of the support and solution," she continued.

Taylor says that the Schizophrenia Society of Canada and other organizations have played a positive role in educating people and providing information, but that teachers, parents, health-care workers and friends need to provide support for the sibling too.

"There needs to be more support groups for the siblings. We need to encourage them to get the information and education they need," Taylor said. "The more you understand, the more you can give support and be a part of the team."

About the University of Alberta Faculty of Rehabilitation Medicine
As the only free standing faculty of rehabilitation in Canada, the University of Alberta Faculty of Rehabilitation Medicine balances its activities among learning, discovery and citizenship (including clinical practice). A research leader in musculoskeletal health, spinal cord injuries and common spinal disorders (back pain), the Faculty of Rehabilitation Medicine aims to improve the quality of life of citizens in our community. The three departments, Occupational Therapy (OT), Physical Therapy (PT) and Speech Pathology and Audiology (SPA) offer professional entry programs. The Faculty offers thesis-based MSc and PhD programs in Rehabilitation Science, attracting students from a variety of disciplines including OT, PT, SLP, psychology, physical education, medicine and engineering.