Exploring Participation Experiences of Individuals with Traumatic Brain Injury to Inform Outcome Measure Development: A Qualitative Study.

Abstract

To use a patient-driven approach to identify characteristics of participation that support or impede the participation of individuals with traumatic brain injury (TBI) and serve as a foundation for a patient-centered measure. In this qualitative study, we conducted thirty-two one-on-one interviews and five focus groups with individuals with TBI, family members, and clinicians. We used an International Classification of Functioning Disability and Health (ICF)-based interview guide to explore how individuals with TBI experience participation. We used a hybrid deductive/inductive approach to analyze the data. Virtual interviews and focus groups were conducted via videoconferencing. 41 individuals with TBI, seven family members, five clinicians. Not applicable. Characteristics of participation after TBI RESULTS: Analysis of participants' descriptions of their experiences and perspectives informed participation domains and identified a previously undefined aspect of observable participation: participation complexity. Participation complexity reflects intrinsic characteristics that influence participation, the intricacy of those characteristics, and the extent to which they require coordination of internal and external resources. Complexity appears to contribute to participation restriction. We identified a previously undefined aspect of participation: participation complexity. Participation complexity reflects a cross-domain aspect of objective participation that is based on the experiences described by individuals with TBI, their families, and their care providers. Participation complexity may be compatible with an IRT-CAT-based assessment approach and may address existing measurement challenges introduced by personal preference and competing time demands. This study followed a patient-driven approach to understand the experiences of individuals with TBI in relation to participation. Future work will focus on developing a patient-centered measurement tool grounded in participation complexity and will involve co-creating an item bank, score reports, and dissemination platforms to ensure that comprehensible information is available to patients, families, and care providers to support informed decision-making.