A tool for measuring burden in activities and participation of clients with acquired brain injury: the FINAH-instrument

Abstract

Primary objective: The objective of this study was to design an instrument to screen for burden in the daily life of both the client with acquired brain injury (ABI) and their nonprofessional caregiver. Research Design: Exploratory research Methods and Procedures: Based on a survey amongst stakeholder organizations, the FINAH-instrument is designed as a digital self-assessment questionnaire, based on ICF-framework. A test survey of the FINAH instrument is conducted on both clients, nonprofessional caregivers and healthcare professionals. Main Outcomes and Results: The relative burden per item for clients and nonprofessional caregivers is most prominent in the domains of fatigue, cognitive and emotional consequences, self-care and mobility. The estimation of burden for clients and nonprofessional caregiver by healthcare professionals showed an overall 65% correct estimation by the healthcare professional. 19% of the items showed underestimation of burden, while 16% showed overestimation. Conclusions: These results show that FINAH can ameliorate the estimation of the health care professional on the self-assessed burden of clients and nonprofessional caregivers, thus substantiating a more client-centred approach.