Integration in the community following a severe traumatic brain injury : a qualitative study exploring the presence of occupational rights violations over a lifetime experience

Abstract

Introduction: Severe traumatic brain injury (TBI) is a chronic condition associated with an ongoing need to adapt to a multitude of life changes. To ease transitions and optimize occupational development, people with TBI should ideally be provided with equal opportunities to engage in varied and meaningful occupations. Despite this overarching principle, disparities between ideal and actual engagement are common. The objective of this study was to examine the experiences of people living with TBI more than 5 years post injury to explore changes in engagement in their occupations and potential situations of occupational rights’ violations. Methods: For this exploratory qualitative study, in-depth interviews were completed with 5 participants with severe TBI (average time post-injury: 17.6 years). Interviews were analyzed using principles of the critical incident technique. Results: Despite currently being in a relatively stable living situation, all participants had experienced changes in their community integration. These were associated with: high task requirements, quality of support provided by the social environment, accessibility to resources, and level of interest in engaging in occupations. In this context, participants had to decrease their engagement in meaningful occupations, and adapt their occupations, personal expectations, and environments. Conclusions: Following their TBI, participants were prevented from fair and equitable access to numerous occupations, which limited their community integration. Injustices were difficult to overcome as participants lacked the abilities and formal support to do so. These results underline the need for more long-term community services.