They had stopped for a breather during a bike ride and she had expected him to agree with her observation that he’d had a tough year.

“He said, ‘Oh, no. No, since my diagnosis I think that it’s so much better,’ ” Ms. Schneider recounted at a recent forum hosted by St. Joseph’s Healthcare Hamilton.

“He was referring to the fact that he’d received a diagnosis that helped him make sense of his very frightening experiences and that he was taking medication to help him cope better with life in general.

“It’s not too strong to say that I was completely stunned by the difference in our perspectives.”

The revelation prompted the University of Calgary communications professor to spearhead a groundbreaking study that took a unique look at the struggles faced by people diagnosed with schizophrenia: it put the patients in charge.

They developed the questions, conducted the interviews and helped analyze the responses to ensure the focus remained on their issues.

“I think that helped the people who were being interviewed to really connect with the project,” Ms. Schneider said. “Having people do the interviews who have that same experience makes a tremendous difference.”

The novel approach yielded some surprising insights and an equally unconventional presentation of the results: they are compiled in Schizophrenia: Hearing [our] Voices/Dilemmas of Care and Control, a poster book featuring line drawings of the patient researchers.

Many of those interviewed offered stinging criticisms of their treatment by doctors and social workers — leading at least one doctor to tell Ms. Schneider he had changed his practices as a result.

“For cancer or heart attacks, they always tell you, ‘You’ve had a heart attack, you’ve got cancer, you’ve got leukemia.’ Only with mental illness, they won’t tell us,” one patient said.

All comments are anonymous, but they often betray a sense of vulnerability.

“Every time I asked how long I was going to be in (hospital), they said, ‘Three more days,’” complained another. “Then, suddenly, I was in for three months. They should explain what they are doing and why.”

Drugs were a big issue among the 30 patients interviewed.

“I feel weighted down by the medication,” one observed. “It’s hard to move, walk, do things. It’s like lifting heavy bricks all the time. It’s like walking in slavery.”

Asked another, “Do I walk around crazy, or do I take my meds and put up with the weight gain, and stiffness, and blurred vision, and dry mouth, and all the other side effects?”

Finding housing presented huge challenges. Some rejected the control of an approved home, but clearly fared poorly on their own.

“I was living with a couple of kids who had just gotten off the street,” one said. “I don’t know what they did with my rent money, but they didn’t pay the landlord. They moved out. The landlord didn’t even know I was living there. So I was just out of a place.”

Another managed to find a basement apartment, only to discover it infested with mice, mould and “mushrooms growing out of the carpet.” Others couldn’t even manage that: “As soon as I told them I was living at the shelter, they said, ‘We don’t want someone who’s been on the streets because we can’t trust you.’”

But the negative comments were balanced by many positive ones. “My doctor asked me just one question: ‘What do you need to feel better?’” one patient said. “And everything came into place.”

“The social worker from the hospital went with me to check the place out,” another said of arranging housing. “We talked about how much it was going to cost me and whether I could afford it. He did all the footwork for me.”

Family support was critical. “My mother takes me shopping and helps me out when I have bad friends who take advantage of me,” one said. “My sister helped me get my own place,” another recounted. “She taught me how to look after money, how to do the house cleaning, and how to look after myself properly.”

Many clearly struggled with their identity, objecting to being labeled.

“I still have a hard time dealing with the fact that, yes, I have schizophrenia,” one said. “I’m still in denial and probably always will be, because who wants to be this way?”

The study, which has also been developed into a documentary film and dramatic reading, offers 24 recommendations, including calls for better communication by caregivers and more choice in living arrangements.

Ms. Schneider said three key findings are that patients feel they have to do as they are told, be grateful for any care they do receive and take on “illness identity” to get services, marking them forever.

The way out of this, she said, is “genuine communication.”

“They would like to receive information about their diagnosis and about medication and the side effects of medication, and where they can find support,” she said.

“They would like to be treated with dignity and respect, and they would like to be equal partners in decision-making on all aspects of their lives.”

Dr. Jennifer Brasch, medical director at St. Joseph’s psychiatric emergency service, said many of the comments in the study “could have easily come out of the mouths of clients here in Hamilton.”

But the approach is consistent with local efforts to encourage people to recover from mental illness, she said, including through activities that engage them with the community and promote a sense of well-being and purpose.

“The idea of involving people with severe mental illness as active participants in the entire research process is unusual, but potentially extremely rewarding,” Dr. Brasch said. “They can be active, valuable contributors to our understanding of the experience and what changes are needed.”

More information on the study is available at callhome.ucalgary.ca .