Expanding the circle of care: What does trauma-informed care mean for family-centred care?

CrossCurrents

 

By Kim Goggins

In the 32 years since Maureen Foy’s daughter was diagnosed with paranoid schizophrenia, the experiences Foy has witnessed her go through are vividly ingrained her mind. She has watched her daughter desperately pounding on the window of an isolation unit, crying for help; she has seen her handcuffed and taken away, not because she was violent, but because she was sick and frightened; she has sat beside her for hours in an emergency waiting room as she rocked back and forth in a catatonic state.

One of Foy’s most painful memories is of her absolutely panicked daughter running through the hallway of a hospital, trying to escape. Knowing she needed to stop her daughter before she reached an outside door, and seeing no other choice, the five-foot-one, 105-pound woman tackled her to the ground.

“I will never experience anything as painful as that ... to have to physically tackle her, which goes against everything I believe in,” says the soft-spoken 74-year-old. “It was an offence to myself and to her.”

Foy’s story is a painful one, reflecting not only the anguish of mental illness, but also the traumatizing potential of the mental health system – for both clients and families. As mental health organizations begin to recognize the need to work from a trauma-informed philosophy – one that acknowledges the pervasiveness of trauma in the lives of clients and how the system itself can traumatize clients – some, like Foy, wonder what this means for family-centred care. The fact that Foy was not allowed to stay with her daughter while she was in distress sends a clear message that families are not important.

In a system that family advocates say traumatizes the family by disregarding and excluding them, many worry that a trauma-informed system may further limit family involvement because people working with clients could become more suspicious and cautious of families.

“I go back to a time, 25 or 30 years ago, when we had ‘schizophrenogenic mothers,’” says Foy. “In other words, if children had schizophrenia, the mother was mainly responsible. That bias against mothers has carried through, even though mental health people do not want to talk about it.”

“The whole idea of families being traumatized and disrespected is talked about incessantly at the Centre for Addiction and Mental Health (CAMH) Family Council,” says Foy, who is involved with the council. “Families come for peer support – 400 family members last year, and the resource centre is only open two-and-a-half days a week.”

In a 2004 CAMH report, “Putting Family-Centred Care Philosophy into Practice,” families shared their frustration at being unable to obtain information about their loved ones and being excluded from care planning. A study of 228 families cited in the report found that only 31 per cent thought they were sufficiently involved in treatment planning.

The Family-Centred Care Initiative at CAMH is pushing for a policy that will see families (or the client’s support network) involved in all aspects of treatment. The committee consists of staff and family members, and over the last five years has created this policy to deal with lack of family acknowledgement and inclusion.

Karyn Baker, executive director of the Family Outreach and Response Program at CAMH, understands the concern. Ten years after her program was developed to align family groups with consumer/survivor programs, there are still challenges, as families that advocate more involvement are often at odds with members of consumer groups who were affected by trauma within their families.

“It’s complicated, but I think a lot of prejudging goes on – that because families may have been involved in direct trauma they can’t somehow be helpful in the recovery process or don’t need their own support in recovery of whatever led them to committing this sort of traumatic act,” says Baker. She says the reality is that a lot of people stay in touch with families that have caused trauma: “That’s what we see here, so working with the whole family in terms of healing, moving forward, and understanding the experience and its effects can be helpful for the person recovering,” she says, adding that clients must first agree to have their families involved.

Family advocates insist that a trauma-informed system must recognize that families also experience trauma when a relative has a serious mental illness or addiction. “Like clients, families go through stages themselves when they realize a family member has a problem,” explains Dr. Caroline O’Grady, an advanced practice nurse researcher and clinical project scientist in the Concurrent Disorder Service at CAMH. “It’s an experience of shock, and then there’s loss and grief for the person. It’s like being on another planet all of a sudden. It’s shocking and for the families, that’s extremely traumatizing.”

 

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