When people are ill, whether it’s a physical illness such as cancer, or a mental illness, they will usually receive medical or mental health care. That care may include medication, surgery and therapy, all intended to help them heal.
But Prof. Michèle Preyde, Family Relations and Applied Nutrition, looks beyond medical care. Her research explores the psychosocial needs of people with illnesses and how those needs can be met. She studies these issues through a collaborative approach with practitioners who work jointly with her to frame research questions and develop ways to gather information.
“It’s a type of community-engaged scholarship,” Preyde explains, “and it’s also a type of integrated knowledge translation, which has become increasingly important to researchers.”
Currently, she’s studying two areas. One is psychosocial oncology, where she surveys and interviews patients to develop greater understanding of the needs of cancer patients and the services that might help meet their needs. Preyde has studied patients at a regional cancer centre where a supportive care team provides counselling and informational workshops.
“The workshops are on topics such as an orientation to chemotherapy, where they learn about what chemo is, how it works, and how it might affect them,” she says. “They also get tips on coping with the side effects. The people who attend these workshops generally rate them as very helpful, and the workshops are heavily promoted to the patients. Yet our survey found, to our surprise, that some of the people were not aware of them. It was a small number, but we were surprised to find there were any at all.”
Respondents were also positive about the care they received from the medical and allied-health professional staff at the centre.
Despite this excellent care, though, 100 per cent of the respondents reported feeling distress; those with cancers more likely to lead to a negative prognosis were the most distressed and depressed. Preyde says not knowing what their personal outcome would be was their greatest concern. It is difficult to address this concern because outcomes cannot always be predicted with complete accuracy, she adds. “At best you can give someone a percentage ─ 60 per cent of people with this type of cancer will survive, for example ─ but that doesn’t help much, because you can’t tell them if they’ll be in the 60 per cent or the 40 per cent who don’t survive.”
Patients also said they wanted more support for their spouses and especially their children. Seeing their children in distress about their condition was a difficult experience for patients. “They wanted their children to have access to someone to talk to, and to programs geared specifically for them,” says Preyde. “They were deeply concerned about the impact of this experience on their children.”
Preyde’s other research involves children and youth with mental health conditions serious enough to be referred for residential treatment. The long waiting lists for admission to the residential programs led to the development of an alternative to residential care: home-based intensive treatment. All youth and their families are offered the home-based treatment option. However, such an option requires a stable and viable home with caregivers who are able and willing to be involved in the intensive treatment process.
Preyde and her colleagues found that the legal guardian for more than half of the youth who accessed residential programs was the Children’s Aid Society, while the legal guardian for over 97 per cent of youth in the home-based program was their biological parent. So they were two very different groups.”
Because of the profound differences in home and early-life experiences, one cannot make direct comparisons of intervention effectiveness between the youth who were in residential treatment and those in home-based programs. Preyde followed the participants for three years after their discharge from the programs and found that clinical and psychosocial functioning improvements were evident for both groups, however, some youth continued to score within the clinical range. Furthermore, at follow-up, almost half of those aged 16 and over in the residential programs were not in school as compared to one-third of youth in the home-based program. In other words, despite their improvements, many youth still had significant symptoms and difficulty with community adaptation.
One thing that has surprised Preyde is the “resiliency” that many of the troubled young people in her study seem to possess. “We also conducted in-depth interviews with 68 of the youth, and what was remarkable was that despite the grave hardships and difficulties most of these youth have experienced throughout their lives, most still had a sense of hope for the future. I was impressed by that. It says something about the human spirit.”