I began my career in pediatric psychosocial oncology in 1984 as a member of the Psychosocial Resources Team, pediatric oncology specialty, at the Tom Baker Cancer Centre and Alberta Children’s Hospital. I continue to be a clinician and researcher within the Hematology, Oncology, Blood & Marrow Transplant and Immunology Program at the Alberta Children’s Hospital.
My clinical work and research interests have focused on many areas relevant to this changing field. My earlier work in the late 1980’s and early 1990’s was centered on cognitive, behavioral, and pharmaceutical interventions for coping with procedural pain in children with cancer. By mid-1990 I became interested in the foundational work in the field of (psychosocial) pediatric stem cell transplantation (SCT).
Over the past 20 years, I have specialized in pediatric psychosocial care for children and their families undergoing stem cell transplant; studying the ethical considerations for minor sibling HSCT donors as well as developing protocols for assessment and surveillance of these donors. Family decision-making in stem cell transplantation has also been a clinical and research interest.
Understanding the influence a childhood cancer diagnosis has on parental partnerships has been another focus of research and clinical work. The psychosocial issues families face across the cancer trajectory, including palliative care and bereavement care have also been an important aspect of my clinical work. As cancer treatments evolve further and become more complex, and as more genetic studies are being conducted with children and their parents, new ethical and treatment issues are coming to the forefront that necessitate further study. I have had clinical experience and conducted research in working with families around decisions to consent to autopsy and post-mortem tumor banking.
My work has included an international interdisciplinary collaborative effort involving stakeholders and experts committed to developing evidence-based standards for Pediatric Psychosocial Care of Children with Cancer and Their Families. This 3-year project was funded by The Mattie Miracle Cancer Foundation. The 15 standards, based on a systematic review of relevant literature, using AGREE II methodology were published in December of 2015 in Pediatric Blood & Cancer with a follow-up manuscript in 2021 on the identification and implementation of the standards.
Another aspect of work I have contributed to is the development of returning research results to participants who agree to have their child registered on clinical trials through the Children’s Oncology Group, a National Cancer Institute supported clinical trials group, which is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. Work has included the coordination of the development of lay summaries from research studies as well as a website for professionals and families to access the lay summaries. Other committee work through the Children’s Oncology Group has included Behavioral Science, Diversity and Health Disparities, and Survivorship and Outcomes. Other professional international collaborations include the Association of Pediatric Oncology Social Workers