Supporting Parents Through Difficult Times

When a family learns their child has a serious, life-threatening or life-limiting illness, their world may come to a stop. Serious childhood illness disrupts family life and wellbeing. What families need most during this difficult time are answers and information that are easily accessible. A University of Saskatchewan (USask) research team, led by College of Nursing Drs. Jill M. G. Bally (Nominated Principal Investigator) and Shelley Spurr (Principal Investigator), is laying the groundwork to create an electronic portal for families who have children with life-threatening and life-limiting illnesses - an online space in which the child’s health information, upcoming appointments, and important personal notes are all in one place, at the touch of a button.

Working together with families, community organizations, knowledge users, researchers, graduate students, digital health specialists and decision-makers from five Canadian provinces, the research team will work to identify the important priorities for the electronic pediatric palliative care portal. “In Canada, over 1400 children with complex treatment needs receive specialized pediatric palliative care every year and in Saskatchewan alone, over 200 children and their families receive specialized pediatric palliative care, often lasting years,” said Dr. Bally. “However, many children and families do not have access to such care because it is inconsistently developed and available across Canada. This novel technology innovation will allow families facing lengthy, traumatic health experiences to use resources to support their hope and other aspects of family health, and readily view health information about their child, taking some of the stress out of waiting for the next appointment.”

Drs. Bally and Spurr recently received a Canadian Institutes of Health Research (CIHR) grant to begin the initial research into creating the ePortal. “This CIHR Planning and Dissemination grant is integral to our research, as funding will provide the means to expand our multidisciplinary network, share experiences, expertise, and knowledge, and generate new knowledge to support planning the development of the ePortal,” said Dr. Spurr. “Ultimately, with national agency funding, we hope to develop, share, and evaluate the ePortal with parents of children with life-limiting and life-threatening illnesses, with the goal to positively impact many Canadian families.”

The research team plans to host a two-day meeting this fall to share experiences, knowledge, and other details needed to develop the priority components of the pediatric palliative care ePortal. Dr. Bally feels strongly this ePortal will be a very important tool to support parents through such a difficult time. “We hope this easy, accessible, secure ePortal will support family engagement in their child’s care, empowerment, better communication, and overall family wellbeing.”

The research team also includes co-investigators Drs. Lorraine Holtslander, Shelley Peacock and Tracie Risling from the USask College of Nursing and Drs. Janna Brusky, Heather Hodgson-Viden and Roona Sinha from the USask College of Medicine. The title of their project is Developing a Doorway to Accessible Supportive Care Resources for Parents of Seriously Ill Children: An Innovative Pediatric Palliative Care ePortal.