A preliminary study to investigate the empowerment factors of survivors who have experienced brain damage in rehabilitation

Abstract

Background: This study was an extension of previous studies on the empowering of families caring for a relative who had experienced brain damage. The demand to adopt a similar empowerment concept in the direct rehabilitation of people with brain damage was proposed. Objective: The development of a theory-driven instrument, in the form of a person-administered empowerment questionnaire, so as to establish the empowerment factors of people with brain damage during their rehabilitation process. Research design: A kind of methodological study was used to develop, validate and evaluate research tools. This study concentrated on the development of a questionnaire that accurately measures empowerment in people with brain damage. Methods and procedure: This questionnaire derived items from both the existing literature on brain damage rehabilitation and related studies on people coping with brain damage. Open-ended questions were also included to investigate how patients may be encouraged to achieve successful rehabilitation (such as degree of acceptance, learning of adaptive skills and community re-entry). A structural empowerment model has been constructed by both content validity analysis and construct validity through an explorative factor analysis of 112 people with brain damage. Main outcome and results: A 42-item questionnaire has been developed, constructing four interpretable factors: Support (13 items), Skill (14 items), Aspiration (nine items), and Knowledge (six items), which accounted for 49.99% of the total variance. Analyses of open-ended questions showed that they generally lack external resources and support in the coping process. They did not have sufficient information to face their problems in a variety of areas, although they were quite aware of their importance. They could rely only on personal assets and families, and less on friends, work-mates, and external social resources. Conclusion: It is suggested that the results of this initial empowerment framework can either guide ways to improve the case management of patients with brain damage (in terms of structure, methods, and evaluation mechanisms) or assist in the research and design (R&D) of rehabilitation programmes with better efficacy and effectiveness. Further research using Rasch Analysis is suggested to establish item difficulties, and using the findings as an outcome measure in rehabilitation is recommended.