Current Projects
Pain and Irritability in Complex Kids
To learn more about this research visit Pain Detectives or contact Research Coordinator, Anne-Mette Hermansen.
Dr. Hal Siden, Dr. Stephanie Glegg, Dr. Tim Oberlander, Dr. Caroline Sanders, Laesa Kim, Gail Andrews, Dr. Sharon Hou
Children born with severe brain-based developmental disabilities frequently experience persistent unexplained periods of pain and irritability, often compounded by a limited capacity to communicate their distress, a phenomenon we call Pain and Irritability of Unknown Origin (PIUO). Informed by our clinical and research experience, we have designed a systematic approach, called the PIUO Pathway, to address the management of these children’s pain and irritability with the goals of reducing pain symptoms, improving the day-to-day lives of the child and family, and simplifying treatment options for clinicians.
In this study we evaluate the effectiveness of an integrated clinical pathway (i.e. a sequential order of standardized evaluation steps) for managing unexplained pain and irritability in children with complex conditions and limited communication. We are also testing how to best move our program from a research environment into community clinics and studying the uptake of the PIUO Pathway by pediatricians who see children with PIUO in a primary care setting.
Cannabis for Pediatric Patients
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Functional Changes in Children after Surgery
To learn more about this research please contact Research Coordinator, Anne-Mette Hermansen.
Dr. Lisa Holstein, Dr. Hal Siden, Anne-Mette Hermansen, Maria Juricic, Dr. Kishore Mulpuri, Stacey Miller, Elaha Niazi, Daphne O’Young, Dr. Emily Schaeffer
Children with severe neurologic impairment regularly require surgery to manage their underlying conditions. Anecdotal evidence suggests that children with severe neurological impairment experience unexpected and persistent postoperative functional changes long after the postoperative recovery period. However, evidence from the perspective of caregivers is limited. In this study we explore the postoperative recovery process for children with severe neurological impairments through the lens of their caregivers. Rich interviews have uncovered themes beyond the functional changes children have experienced post-surgery, for instance caregivers feeling a lack of preparedness when helping their children through recovery and their need for support.
Patient Engagement in Pediatric Health Research
Colleen Pawliuk, Candice Barrans, Elaha Niazi, Anne-Mette Hermansen, Danielle Pietramal, Gabi Zamma
In recent years Patient Oriented Research (POR) strategies have become increasingly prevalent in health research in Canada and beyond. In fact, the involvement of patient-family partners is now a mainstay in projects aiming to meaningfully investigate and test programs designed to improve patient care and health outcomes. Patient collaboration in research projects provide diverse benefits to research teams, including allowing the research team to view their study through the lens of lived experience.
As interest in POR increases, it is important to consider how patient partners are being recognized for their contributions to health research. As an embedded team member, a patient partner may contribute meaningfully throughout the research process and their contributions could be recognized through formal acknowledgement or through authorship. Despite this, studies show that patient partners are infrequently included as co-authors on publications.
The objective of this rapid scoping review is to assess the prevalence of authorship and acknowledgement of patient partners in health research publications and to map how patient partners are involved throughout the research process.
Health Equity for Children with Medical Complexity
Dr. Sharon Hou, Dr. Hal Siden, Dr. Stephanie Glegg, Laesa Kim, Colleen Pawliuk, Christina Zeng
Children living with health complexity are an equity-deserving population. Still, health inequities exist for children with complex health conditions, including socioeconomic, sociocultural, and geographic barriers to accessing high-quality care. Based on existing work, we have an incomplete understanding of the health inequities that exist for children with health complexities. There is an important need to fully understand the intersectionality of disability and other social and cultural determinants of health in children with complex health conditions and their families in order to provide effective health care and provide them with due respect for their personhood.
The goal of this project is to gather and summarize studies completed on this topic using a tool called a scoping review. A scoping review is a systematic way of identifying and synthesizing relevant literature on our topic of interest. The review will help us understand what work has been done in this area and what future research needs to address. This information will ultimately help us plan future care so that we can better support the unique needs of children with health complexity from all social and cultural backgrounds.
Population Data for Children Living with Serious Illness in BC
Dr. Hal Siden, Elisa Castro Noriega, Jason Zheng
Infants, children, youth and young adults (ICYA) with serious illnesses follow unpredictable trajectories living with complex healthcare needs. Pediatric Palliative Care (PPC) encompasses more than the final days of life, attempting to improve quality of life, sometimes over many years. In this study we describe demographic characteristics, calculate yearly prevalence and model risk of instability for the population in BC who would benefit from PPC services, to inform program planning and establish baselines for future studies.
Completed Projects
Charting the Territory
Dr Hal Siden, MD, MHSc, FRCPC, Dr Rose Steele, RN, PhD
- When a child is sick, it impacts on the family (parents and siblings) and the impact may extend over time, from diagnosis through bereavement.
- Symptoms change over time; it is important for families and clinicians to have more information about how troubling symptoms evolve. This is especially true for rare metabolic, neurological and chromosome conditions, about which we do not know very much.
- Children with progressive conditions undergo a large number of procedures, take many medications, and are often in hospital, especially intensive care.
- The trajectory for children, even those with life-threatening conditions referred to palliative care, is difficult to predict.
Best Practices
To learn more about the Best Practices Study
Dr Betty Davies, RN, PhD, FAAN, Dr Rose Steele, RN, PhD
- When a child is seriously ill or dying, family relationships and exchanges with health care professionals (HCPs, including nurses, physicians, and social workers) clearly influence parent satisfaction with care and its outcomes.
- When relationships are good and interactions are “human”, parents carry memories that are healing; conversely, when relationships are not good or interactions do not go well, parents carry memories of unnecessary additional suffering.
What Motivates Families to Participate in Research
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