Topical Concurrent Session 3B – Hearing the voices of youth with chronic pain

Description

Topical Concurrent Session 3B: Hearing the voices of youth with chronic pain: Using qualitative methods to enhance quantitative findings
Chair: Dr Amanda Feinstein, Stanford University, USA

As attention has turned to Big Data in recent years, it is critical that subjective and individual patient experience remain an integral part of the research process. Hearing the voices of youth with chronic pain, understanding their experiences, and engaging them in the research process are all important aspects of care in paediatric pain. In this symposium, Dr Rachel Aaron will explore the value of qualitative analysis in enhancing treatment design, highlighting systematic approaches to coding narrative data through two examples (i.e., family struggles and needs related to paediatric surgery; experience on a paediatric pain clinic wait-list). Dr Anya Griffin will describe the integration of using a qualitative modality, PhotoVoice, in combination with a large open-source data registry in a paediatric pain rehabilitation program. Dr Jennifer Stinson will describe ways to meaningfully engage youth with chronic pain in the research process including a patient engagement project focused on research priority setting, developing a patient engagement registry and training modules for patients, families and clinicians. All presenters will provide examples of current projects that emphasise the subjective experience of paediatric pain patients, with rich case examples illustrating the voices of youth with chronic pain.

Speakers:
Dr Rachel Aaron, University of Washington, Seattle Children’s Research Institute, USA
Dr Anya Griffin, Stanford University, USA
Dr Jennifer Stinson, University of Toronto, Canada