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The long road home: Families are key to caring and recovery in first episode psychosis
Author: Helen Buttery
At 15, Tara Marttinen heard multiple tortured screams coming from the woods near her boyfriend's house in Sault Ste. Marie, Ontario. She could ignore the strange murmurings she'd been hearing on the bus and at home, but these screams sounded like Dante's inferno. Still, she kept the fear to herself. "If you tell somebody you're hearing voices in your head, they'll think you're crazy," says Tara. At school, when a voice screamed in her ear, "Take off your shoes and get under the chair!" Tara didn't mention it to anyone until she picked up a brochure sitting on the coffee table at home. The pamphlet mentioned that auditory hallucinations were a symptom of narcolepsy. This gave Tara the necessary push to confide in her mom about the voices.
It didn't take long for Tara's mother, Terry-Lee, to put two and two together. Tara's father was suspected to have had schizophrenia and committed suicide at 22. Terry-Lee wasn't going to sit back and watch Tara go down the same path. "I am solution-oriented," she says. "The question was, what is going on and what do we have to do to help Tara?" Terry-Lee discovered the Prevention and Early Intervention Program for Psychoses (PEPP) in London, Ontario, and immediately called for help.
Early intervention is crucial to getting youth experiencing a first episode of psychosis on the path to recovery. A first psychotic episode (FPE) typically occurs in a person's teens or early 20s and may develop into bipolar disorder or schizophrenia. The incidence rate of FPE is estimated to be 15-20 cases per 100,000, according to the Canadian Mental Health Association. A large body of research has found that early intervention brings about timely treatment, accelerates recovery, preserves psychosocial skills and lowers the risk of relapse.
Families play a key role in facilitating these positive outcomes. They can be a resource and a support, creating a safe environment for these kids to get well. "We couldn't do half as good a job if we didn't have the support of families," says Tom Ko, a family specialist at the Early Psychosis Treatment Program in Calgary, Alberta. His sentiment is echoed by community-based early intervention programs across Canada, where therapists mobilize families as partners in the care and treatment of young people experiencing a first episode of psychosis. "This is when people are most vulnerable and it's vital to intervene in a timely way," says Sabrina Baker, a family worker with the First Episode Psychosis Clinic at the Centre for Addiction and Mental Health (CAMH) in Toronto.
Yet families may not have the resources and support they need to create a positive experience that facilitates recovery. A 1998 survey conducted by the British Columbia branch of the Canadian Mental Health Association found that people with mental illness and their families received minimal or no information about their diagnosis or about the treatment and support available to them. Yet education for the families of people with schizophrenia affects the treatment process. Without an understanding of the illness, families are less likely to know how to help. The survey also found that when families did receive information, it was through their own initiative, rather than through a proactive approach by the health care system.
This neglect by the system isn't surprising, given that families were not always seen as a positive influence. Historically, mothers of children with schizophrenia have been criticized as being overprotective and dominant -- these "schizophrenogenic mothers" were held responsible for the illness. "It's important to stress that families are not to be blamed," says Baker. "The more constructively involved the family is the better the prognosis."
Families can provide clinicians with valuable information in diagnosing and treating the child that can lead to quick, effective action. They can provide a family history and valuable observations -- perhaps they've noticed the child talking to himself or a teacher has reported that the child is having difficulty concentrating in class. "There is wisdom in the family. Families are the experts on their children," says Baker.
Respecting this inherent wisdom, FPE programs across Canada are partnering with families to promote recovery. These programs offer family interventions that include working with individual families and multiple-family groups, educating families about psychosis, offering coping strategies, providing support groups for families and training family members how to communicate and problem-solve. Such involvement is important because the experiences that people with a first episode of psychosis have play a key role in recovery. In the 2001 book Early Interventions and Psychosis, contributors Dr. Elizabeth Kuipers and Dr. David Raune cite studies showing that children with psychosis who return to live with families with high expressed emotions -- either criticism or over-involvement -- will, within nine months, relapse in about 50 per cent of cases, versus 21 per cent among families with low expressed emotion.
"The thoughts these kids have about themselves are so horrifically negative that any criticism just reinforces their own self-criticism," says Walter Lidster, a group and family therapist at Fraser South Early Psychosis Intervention Program in White Rock, British Columbia. "You have to adjust your expectations and your family's lifestyle to a person who is recovering from psychosis." At the same time, the family must be careful not to be overly involved or to smother the child. Lori Hassall, clinical leader at PEPP, in London, explains that people who experience a FPE are, for the most part, in a phase of individuation, so it is important to give the person space and respect them as an adult. "It can be quite distressing if a family is trying to make all the decisions and choices," says Hassall.
Making decisions and choices becomes easier when families become experts in a young family member's illness through psychoeducation classes. Terry-Lee, Tara's mother, was invited to attend a workshop at PEPP, where Tara was being treated. At the all-day workshop, a team of doctors explained psychosis, medication, relapse, prevention and the importance of family support. "From the get-go, I was involved in the process and there was a sense of community and a sense of being a team player, which remains today," says Terry-Lee.
The workshop helped Terry-Lee build a safe environment where Tara could
flourish. To promote her daughter's social development, Terry-Lee let
Tara have home parties. "The opportunity to have
But family involvement in early psychosis intervention isn't intended solely to boost recovery for the ill family member. Families can affect psychosis, but psychosis also profoundly affects the family, increasing the family's own need for support. Psychologist Dr. Jean Addington is director of CAMH's Prevention through Risk Identification Management and Education (PRIME) Clinic, an outpatient service dedicated to early identification and treatment for young people between 14 and 30 at risk for developing psychosis. While working at the first episode clinic in Calgary, Alberta, which she developed with Dr. Donald Addington, she followed the families of 300 individuals with psychosis for three years. She found high stress among these families that only subsided after two years.
Addington explains that it is important to recognize that the family goes through a parallel process to the person with psychosis. "Families clearly feel burdened and experience distress, anxiety, depression and financial strain," she says. "They can and do play a major role in recovery, but without support from an alliance with health professionals, families may find it difficult to see their way through the maze of emotions and challenges that inevitably accompany a first episode of psychosis."
Recognizing this strain on families, many FPE programs emphasize the need for families to take care of their own health. "It's important to realize that the family has the right to education, support and counselling or whatever they need in their own right," says Baker. Families often don't think about themselves, but as Baker describes, dealing with psychosis is like a marathon not a sprint: "For a sprint you can go all out and collapse at the end. For an illness like psychosis, you have to pace yourself, and if you don't help yourself, you won't be any good to your relative, yourself or the rest of your family," says Baker. "Our program helps families work with their relative but also ensures the rest of the family continues to flourish."
Many FPE programs encourage families to flourish by offering support groups to help them deal with their struggles and to constructively problem-solve. Some programs provide multiple-family group treatment. A 2002 study in Psychiatric Services examined the effectiveness of such treatment for schizophrenia, which included weekly sessions designed to educate clients and family members about the illness and treatment, to improve management and coping skills and to provide social support. One year after the groups began, it was found that group treatment was associated with a lower rate of hospitalization compared to standard care.
At PEPP, in London, six or so families meet every week to discuss a particular issue. The problem can be anything -- a teenager having difficulty sleeping at night, wanting to ask a girl on a date, a child who has stopped taking his medications regularly and is smoking cannabis. Older siblings, who also attend these groups, are in a unique position to help. A big brother looked up to by a sibling with FPE may have a lot of influence because it can be easier to hear and accept something from a brother or sister than a parent. Siblings can be very close, so they are sometimes the first to identify signs of relapse -- withdrawal, agitation and anger, for instance. They can also help their brother or sister integrate back into peer-appropriate activities.
"We problem-solve as a group in a light and supportive way, says Hassall. "It really helps destigmatize the illness and normalize the issues. There's a lot of support. You'll see family members of one family support the client of another family and vice versa."
Supporting and valuing families is the reason why Terry-Lee and Tara applaud the first episode program in London that led their family back onto the path to well-being. In fact, psychosis prompted the family to make positive lifestyle changes. Terry-Lee gave up smoking and caffeine. The whole family started exercising and eating better. "What psychosis has done for our family over the last seven years is to mobilize us into a lifestyle change," says Terry-Lee. "We approached psychosis as a family. We've learned to communicate our needs better and have far more love and respect for each other." Terry-Lee believes that if families aren't given the tools and services like those offered by pepp, they can do more harm than good to their child's recovery. For Tara, it was ultimately the support of her mother that got her through. "Without my mom's support I wouldn't be where I am today," she says.
Source: Centre for Addiction and Mental Health, CrossCurrents: The Journal of Addiction and Mental Health