Putting the sibling back into the family

A December 8th news story from the University of Alberta’s Faculty of Rehabilitation Medicine:

By Laurie Wang

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.”

Links:

• Download PDF of story published in Edmonton Journal

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.

Photo credit

SANE launches website for teens in families affected by mental illness

A June 16th media release from SANE Australia:

SANE Australia today launches a new website – itsallright.org – to support the half a million Australian teenagers affected by mental illness in their family.

Executive Director of SANE Australia Barbara Hocking says, ‘this is often the untold story of mental illness – the impact on teenagers who have a brother, sister or parent with a mental illness such as depression, schizophrenia, bipolar or an anxiety disorder.

‘These teenagers are a high risk group – they’re not only managing the confusion and powerlessness of a family member’s mental illness but, without support, are also more likely to experience mental illness themselves. This can be a vicious cycle that can be difficult to escape. Many may feel they are the only ones this is happening to and that they cannot ask for help.’

itsallright.org aims to break this cycle by giving control back to teenagers through information and reassurance. The website centres on the stories of four teenagers, told through online diary entries, who have a family member with a mental illness. The website also provides factsheets and podcasts about mental illness and treatment as well as an online helpline for teenagers to ask their own questions or seek support.

Ms Hocking says, ‘itsallright.org aims to help these teenagers regain control and feel less isolated. The website was built specifically for teenagers and has been designed to help them access the information they want, in a format they want.’

A recent study* by the Australian Bureau of Statistics found that one in five Australians had a mental disorder within a one-year period, leading SANE to estimate that half a million teenagers are managing the impact of the mental illness of a brother, sister or parent every year.

The impact on teenagers with mental illness in the family can be profound: often leaving them feeling distressed and isolated. They often experience confusion, loneliness, shame, embarrassment, or guilt. Their home life may be impacted by poverty, periods of homelessness or the hospitalisation for their relative.

Features of itsallright.org:

• A key feature of the service is the stories of four teenagers with a family member affected by mental illness: Sarah, Rani, Jenna and Brett. The characters are based on the real-life experience of teenagers who helped create the site.

• An online helpline for teenagers to ask questions about mental illness and related topics

• Factsheets on everything from antidepressants to suicide prevention, cannabis and psychosis; family support to treatment and recovery

• Podcasts which provide information about the full range of mental health problems and treatment.

Note to Editors

• SANE Australia’s Executive Director Barbara Hocking is available for interview
• Screengrabs of itsallright.org are available
• Images of Sarah, Rani, Jenna and Brett are available
  

* National Survey of Mental Health and Wellbeing: Summary of Results, 2007 (Australian Bureau of Statistics)

Nursing students complete community placement

Angela Sawler (right) and Brett Sinclair (middle), two fourth-year nursing students at Dalhousie University, have completed a six-month, one-day-per-week community nursing placement at the provincial office of the Schizophrenia Society of Nova Scotia. To read a summary of the work they completed, click here (PDF).

Also present in the photograph is Stephen Ayer (left), executive director of the Schizophrenia Society of Nova Scotia.

Click on the photograph to magnify it.

Life of Francis

From the October 23rd edition of The Weekly Albertan:

By Michelle Lindstrom

Earlier this month during Mental Illness Awareness Week, a group of about 15 people from Calgary's medical community and those affected by mental illness gathered to view A Map of the mind fields: Managing adolescent psychosis, and to discuss the stigma of mental illness.

Later, outside the group setting, Francis, a brown-haired artsy-looking girl with glasses, approaches and offers to tell her story to The Weekly Albertan.

To read the entire article, click here.

Photograph courtesy of The Weekly Albertan.

Schizophrenia -- A Family's Experience

From ABC News:

After Growing Up With a Sister [Who Has Schizophrenia], Author Hopes for More Awareness

OPINION By JANE HENNESSY

Oct. 10, 2008

It was hard to talk about my sister, Rebecca, when I was growing up. She had her first psychotic break as she was packing for college in 1969. She ran up the stairs screaming, "Help! There is something inside me."

My mother ran after her calling, "Rebecca ... Rebecca."

My parents whispered behind closed doors, made a phone call to a psychiatrist, and then took her to the local hospital where she stayed for a week. It was a chaotic time in our house. As I recall, no one knew what had just happened to my sister.

With Mental Illness Awareness Week coming to a close, it's important to remember one in four Americans suffers from a mental health issue and one in 17 has a serious and often life-threatening psychiatric disorder. At any given time, 2.2 million Americans suffer from schizophrenia.

Eventually, Rebecca was diagnosed with a mental disorder -- schizophrenia, and she is ranked at the top 10 percent of the most severely ill.

She sees and hears things that are not real. She has delusions of grandeur. Most people with the severity of her disorder take their own lives.

One day we were driving to a doctor's appointment and she covered her face with her hands and simply said, "I don't know who I am; I don't know where I am."

Most of my life I never wanted to read anything about schizophrenia because it frightened me. I was always reluctant to discuss my sister's illness because of the associated stigma, and I wondered if others would think there might be something wrong with me or my family.

Sadly, I think most families suffer in isolation. Isn't it a shame that there is still a stigma today? It shouldn't be, because everyone is affected in some way by people with mental problems. Although it may not be discussed, we all know a cousin, an aunt, a co-worker, a friend, or even a parent with depression, bipolar disorder, obsessive compulsive disorders and addictions. The severity of these problems varies widely.

To read the entire article, click here.