Written by Hal Siden

RESEARCH PROJECT: Exploring the experience of participating in a patient oriented research study

Lead investigators/designated PI’s:

Laesa Kim, Karen Cook, and Hal Siden 

Approval Date:

August 24, 2020


Est. end date December 2021

The clinical trial “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments.” (The PIUO Study, REB reference number H16-03288) is testing the effectiveness of a clinical pathway in diagnosing and resolving treatable causes of unexplained pain and irritability in children with Severe Neurological Impairments (SNI). 

This study seeks to understand what motivates individuals to participate in clinical research. Specifically, this study looks at the motivations behind participation as it relates to the PIUO Study, and to gain a contextual understanding of the individual experiences while participating in this research. We wish to collect this data employing Patient Oriented Research (POR) strategies, by having a patient-partner (in our case a parent-partner) lead this qualitative evaluation of participants’ experiences in the PIUO Study. We hope that the study will help us understand the complex barriers to research participation for parents of a child with a serious illness. Furthermore, this sub-study will lay the groundwork to build capacity within our team and ensure that we have the human resources to incorporate POR strategies in future research projects. The research design is qualitative – Interpretive Phenomenological Analysis (IPA).

The purpose of this study is two-fold: we wish to understand the experience of, and identify the motivations for participating in a clinical trial that is currently being conducted by our research team (the PIUO Study) and in doing so we wish to build capacity within our team to incorporate patient voices in future work. We will use the knowledge gained from this study to inform how future research projects from this team are designed and conducted. 


  1. Understand the experience of participants in the PIUO Study, including their motivations for participating in research
  2. Describe common elements of participants’ experience
  3. Evaluate the POR lens applied to the PIUO Study and its impact on the research process

We will conduct 10-15 individual interviews and participants’ stories will be solicited through individual interviews, and an iterative process of data collection and reflection. The transcripts of interviews and the results of the data analysis will be offered to participants to review for an authentic representation of their voices.