gms | German Medical Science

Background: Individuals with acquired brain injury (ABI) pose significant challenges to the healthcare system due to the diverse and long-lasting nature of their impairments. To identify deficiencies in care provision, it is crucial to comprehend the constraints on participation experienced by individuals with ABI. Moreover, the transition from inpatient to outpatient care settings may exacerbate limitations in participation and compromise healthcare outcomes.

The conceptualization and evaluation of participation within the framework of the International Classification of Functioning, Disability, and Health (ICF) represent the prevailing approach. However, it is criticized that the ICF does not capture the subjective experience of participation, as well as the concept of self-determination [1], [2]. Assessing participation is particularly complex for individuals with ABI, given their heterogeneous impairments encompassing communication, cognitive, and/or mobility impairments, necessitating comprehensive consideration.

Objective: This presentation presents the selection and piloting of established participation assessments for individuals with ABI during the transition from inpatient to outpatient care. The aim is to discuss criteria for selecting appropriate measuring instruments while considering a broader understanding of participation.

Methods: The presentation is based on a project that examines individuals with ABI during the transition from inpatient to outpatient care within the first year following an intensive inpatient neurorehabilitation of 18 months on average. For this purpose, a comprehensive questionnaire (using established assessment of participation) was compiled and refined through cycles of pretesting and adjustments.

Results: This presentation presents participation assessments suitable for application in both inpatient and outpatient care contexts of individuals with ABI, with careful consideration given to impairments affecting communication, cognition, and/or mobility. Further, it will be shown how both theoretical constructs as well as insights gained from pretesting have influenced the development of the study protocol.

Implication for research and/or (healthcare) practice: This study protocol serves as an example of how to select measures to assess participation in health research contexts for specific patient target groups. It also discusses the challenges of quantifying participation for people with severe ABI and highlights the need to make adjustments to existing standard assessments tools, as they are difficult or even impossible to use. As a result, this group’s empowerment to report on their experience of participation is currently inadequate, thus suitable instruments must be developed.