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.
Journal Club for Parents of Children with Medical Complexity
For more information about the Journal Club and future sessions, please reach out to Laesa at [email protected]
Laesa Kim, Candice Barran’s, Anne-Mette Hermansen
The Journal Club by Siden Research Team, for parents of children with medical complexity, was born out of a desire to engage self-identified “medical families” within research, in new ways. This is an online space for parents, or caregivers in a parental role, to discuss current and prominent published research about all matters of healthcare for children with medical complexity. Each session uncovers a specific topic, such as Trauma informed care or Family Well-Being, and unfolds as an open dialogue with all the participating parents. The Journal Club runs bi-annually and coincides with the publication of a Special Edition Commentary, as part of the Trends Publication, written by a parent participant on the literature discussed at Journal Club.
Completed Projects
What Motivates Families to Participate in Research
To learn more about What Motivates Families to Participate in Research
Laesa Kim, Anne-Mette Hermansen, Dr. Karen Cook, Dr. Hal Siden
This qualitative study aimed to understand the experience of and identify the motivations for parents participating in health research for their children and medical complexity. Patient-oriented research strategies are increasingly important in health research to ensure that the voices of patients and parents help shape and direct research programs. To bring a family-centered and patient-oriented focus to our research and objectives, we asked parents about their experiences when they participated in health care research related to their child with CMC.
In Interviews led by our Family Liaison, parents described numerous reasons for their participation in research about their children. These motivations landed within four main themes: feeling helpless and hopeful, child-centered motivation, being part of something good, and forming a relationship with the research team. In addition to these themes, parents highlighted factors that influenced their ability or desire to participate, such as time, capacity, and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their children with medical complexity and the need to integrate their lived experiences with the research they engage in.
Charting the Territory
Dr. Hal Siden, Dr. Rose Steele, Dr. Susan Cadell, Dr. Betty Davies, Dr. Lynn Straatman, Dr. Rollin Brant
The Charting the Territory study started in 2009, when pediatric palliative care research was gaining traction, with the ultimate goal of bridging the gaps in knowledge about the trajectory of children with rare, progressive diseases and about how their families are affected. Over 200 families participated, enrolling children and families through several clinics at Children’s Hospitals across 7 Canadian cities and 2 cities in the United States. The study looked at how symptoms progress over time and also invited families to answer questions about their quality of life to improve our understanding of how to best care for these vulnerable children in the future. We used a holistic approach that examined the bio-psychosocial-spiritual dimensions within a longitudinal, prospective approach as families move from diagnosis through bereavement.
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.
Mapping the Literature on Symptom Treatment in Children with Q3 Conditions
Click here to see publications from this project.
Physicians, nurses and therapists working in the fields of pediatric palliative care and complex care have an obligation to do their best to improve the quality of life children with severe, progressive and ultimately terminal diseases. They need to have the best evidence possible to do diagnose and treat these diseases. Our clinical experience and our preliminary examination of the research suggest that not enough is known about evaluating and treating challenging symptoms in children with neurological or genetic/metabolic conditions.
A scoping review is a first, broad level review of the literature and sets the stage for future research. In this study we reviewed of the literature to find out how much is known about assessment tools to evaluate symptoms, and treatments to relieve them, in childhood Q3 conditions.
