Research Director, Hippy Lab
Research Director, Pediatric Orthopaedics, BC Children’s Hospital Research Institute
Assistant Professor, Department of Orthopaedics, UBC
The Hippy Lab team at BC Children’s Hospital recognizes the challenges patients and caregivers face when navigating a diagnosis of developmental dysplasia of the hip (DDH), and the urgency of patient-engaged research. DDH is the most common orthopaedic condition in infants, affecting 1–3% of newborns.
In DDH, the hip joint does not form properly, resulting in instability, partial displacement (subluxation), or complete dislocation. Treatment ranges from observation or braces in mild cases to surgery in more severe cases.
To address the emotional and logistical strain, as well as confusion from inaccurate online information, researchers are engaging directly with patients and families to learn from their experiences.
Duneesha De Silva joined the Hippy Lab in 2021 as an undergraduate co-op student. In 2025, she completed her Master of Science in Experimental Medicine at UBC with the Hippy Lab, where her research focused on the lived experiences of patients and families impacted by DDH.
With the support of her supervisors and mentor, Dr. Kishore Mulpuri, Dr. Emily Schaeffer and Dr. Bryn Zomar, De Silva spent two years working to better understand the experiences of patients and families navigating the DDH care journey in British Columbia.
DDH Patient and Family Engagement Initiative
The result is the DDH Patient and Family Engagement Initiative, a project that focuses on understanding patients’ and families’ lived experiences to inform support and care now and in the future.
“We really wanted to hear from patients and family members who are going through or who have experienced the DDH care journey,” said De Silva. “But to truly understand those experiences, we knew we needed more than a simple survey. To connect with the people we wanted to help, we held 14 moderated focus groups and heard from 75 participants.”
Focus group participants included both patients and caregivers of patients with both surgical and non-surgical care experiences. Each session included three to nine participants to encourage open discussion. Sessions were moderated but largely unscripted, allowing participants to share and build on each other’s experiences for a more personal perspective.
“It was important to me to directly engage with the population we want to help,” said De Silva. “To improve care and resources, we have to know and understand what patients and families need and want, and to do that, we need to know what questions to ask.”
After the focus groups, it became clear that families navigating DDH need better access to education, resources, and community support.
Currently, to help families feel more confident and supported, the team hosts webinars with orthopaedic surgeons and nurse practitioners, creating a safe space for families to learn and ask questions. The team is also creating brochures and handouts about specific aspects of DDH care.
“It’s long been a goal of ours to have patient-informed research priorities and patient-partnered development of research priorities,” said Dr. Schaeffer, who clarified that this effort is in progress. “We’re still getting to that point, but we’re working actively to get there, because we want to solve the problems and answer the questions that are a priority for patients and families.”
DDH Patient & Family Advisory Group
The DDH Patient & Family Advisory Group was formed with the mission of developing both educational resources and research centered on improving the lived experiences of patients and families. The Advisory Group is in the initial stages of developing a peer support network to connect families whose children are receiving DDH treatment with peers who have been through a similar journey.
Join the DDH Advisory Group and Research Partners
The Hippy Lab wants to hear from you! Help improve research and support for families impacted by DDH by being research partners with the Hippy Lab. Different levels of commitment are available for patient-engaged research.
Do you have questions? Email hippyadvisory@cw.bc.ca.