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Lyle S. Hallman Faculty of Social Work
Study looking at children with life-threatening conditions receives CIHR grant
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For the next five years, Susan Cadell will be working closely with families who have children suffering from life-threatening conditions – many of whom will die before they reach 19 years of age.
Cadell, an associate professor in Laurier’s Faculty of Social Work and director of the Manulife Centre for Healthy Living, is part of a team of researchers that hopes to close existing gaps in knowledge by providing information about the best care for vulnerable children and their families.
The “Charting the Territory” longitudinal study will track families of children diagnosed with progressive neurological, metabolic or chromosomal conditions to document the progression of the child’s condition and the experiences of the family. The study is bolstered by a grant of $1.3-million over five years from the Canadian Institutes of Health Research (CIHR).
“These diseases are not simple and they do not go away,” says Cadell. “In fact, for many of these children there is no treatment for what makes them sick and no cure that will make them well.”
Cadell explains that few clinicians or researchers have been able to systematically document the diseases’ unstable and often painful symptoms combined with the enormous impact they have on the children, their families and their communities.
By examining the fundamentals of symptom patterns and how families cope, researchers hope to provide new information that will lay the foundation for the best treatments to help support these families.
“In addition to other aspects, this study will examine the personal growth of the family members over time,” says Cadell. “We know from my previous work that personal growth can occur in the most difficult circumstances, but little is known about growth in families with ill children and difficult circumstances, and very little is known about how it changes over time.”
Starting in March, researchers hope to enrol 300 families from clinics in six cities across Canada. Parents will be asked to record children’s symptoms on a monthly basis. Every six months, parents and siblings will assess variables such as family functioning, stress, anxiety, spirituality and marital satisfaction.
The study’s principal investigators are from the University of British Columbia and York University. In addition to Cadell, co-investigators represent University of California, San Francisco and University of British Columbia.
Lori Chalmers Morrison