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Caring for the caregiver

the front cover of a crosscurrents magazine- the main image is a vase with bold coloured flowers

Concurrent disorders pose unique challenges for families

By Astrid Van Den Broek

Spring 2005, Vol 8 No 3

 

To say that Anne* needed support would be an understatement. She needed help dealing with incidents like the time her husband scaled the roof of a cathedral, where he waited for a helicopter to take him to God. Or the times he’d become verbally abusive while drinking. Anne was in desperate need of support for coping with her husband’s co-occurring bipolar disorder and substance use problem: “Everything becomes much more complicated and difficult,” says Anne. “It’s not only the helpless feeling when things are getting out of control; it’s also the frustration that no one can help you.”

That, in a nutshell, is why there is such a need for psychoeducational support groups for families of people with concurrent disorders. But can’t families get support from the many groups for either mental illness or substance use problems? According to experts – and families – the answer is no.

The needs of such families are unique and can’t be met by a group for a single disorder. A 2002 study in the Community Mental Health Journal found that people with concurrent disorders have more difficulty managing daily living tasks than people with a single disorder and that their caregivers spend more time in direct care, crisis intervention, creating structured activities and providing financial support. They also reported greater dissatisfaction with their family relationships, compared to people with a single diagnosis.

What this translates into is a strong need for support for caregivers. This gaping necessity is exactly why the Centre for Addiction and Mental Health (CAMH) in Toronto is running the first study in Canada to examine how to best support these families in a group environment. “In the formal mental health and addiction systems, family groups exist, but rarely do they focus on concurrent disorders,” says Dr. Caroline O’Grady, an advanced practice nurse and clinical researcher heading the project.

The overall goal of the study is to improve the quality of life for family members. “We started this study because I got a lot of calls from family members who were distressed and in need of information. They were telling us quite blatantly that their needs weren’t being met, that they couldn’t get help anywhere when there’s a mental health and substance use problem,” says O’Grady.

But what exactly do these families require? Dr. Kim Mueser, a psychiatry professor at Dartmouth Medical School in New Hampshire, explains that the needs of these families are compounded. For example, rather than merely looking at the issues involved in bipolar disorder through a group, a concurrent disorders group would need to examine and talk about the complicated, tightly knotted potential relationship between substance use and bipolar disorder. Second, support resources for people with concurrent disorders are more limited. This lack of support trickles down to the family, which is left to shoulder more responsibility for taking care of the relative.

These families also have a higher need for coping and problem-solving skills, according to Mueser. Rather than just sharing stories and offering support, what seems to work best is also offering an educational component. With the CAMH group, this includes discussing topics such as self-care, impact on the family and psychopharmacology.

“Not only is the support important, but it’s the solutions, because you’re always looking for solutions and nobody has them,” says Anne, who is participating in the study. “There are no magic bullets. I’ve had to learn to work within certain parameters and that’s where the groups become helpful in terms of sharing ideas that work.”

Developing such support groups is a three-phase process for the CAMH study. The first phase involved a focus group, where family members pinpointed precisely what their needs were. After telling their stories, family members made suggestions for the most appropriate group structure and content. During the second pilot phase, 10 people met over six weeks to discuss their experience with a family member with a concurrent disorder. “We learned that the environment in which these groups are held really guides what you do as a group,” says O’Grady. “People sat in a circle in a small room and it was very process oriented; there was much more peer support and process work than just education. Participants developed warm relationships with one another.” The third phase, which will be completed this year, is a quantitative and qualitative assessment of how the group performed.

The results of the study will have wide-reaching implications for professional care. “We will think about how to use this information to educate health care providers and other staff,” says O’Grady. “At CAMH,we're training every department in concurrent disorders. We will also encourage departments to have some kind of family-oriented, psychoeducational support group. There is a strong need to incorporate the family component into educational sessions with care providers.”

At the very least, families will come to the same insight that Anne has: “The most important realization I've had is that I’m not alone.”

*Not her real name

 

"Family members told us quite blatantly that their needs aren’t being met, that they can’t get help anywhere when there’s a mental health and substance use problem.”