Partners of patients with acquired brain injury: impact, dyadic relationships and support

Abstract

Acquired brain injury (ABI), including stroke and traumatic brain injury, can have a major impact on the lives of both patients and their partners. In the Netherlands, approximately 650.000 patients live with permanent limitations as a result of ABI. They experience problems on physical, behavioral, cognitive, communicative and psychosocial domains, which can lead to loss of independence in everyday activities, reduced societal participation and poorer quality of life. Partners of patients with ABI can experience high levels of burden, anxiety and depressive symptoms. How these symptoms develop over time and which predictors contribute to this development requires further investigation. An interdependent effect exists between patients and their partners. For example, depressive symptoms in patients are related to depressive symptoms in partners. Patients and partners should therefore be viewed from a dyadic perspective. There is a need to support partners of patients with ABI and interventions have been effective in reducing their burden, anxiety, and depressive symptoms and improving their well-being. Blended care interventions, created by combining web-based interventions with face-to-face consultation, seem promising for supporting partners of patients with ABI. Interventions can aim to improve partners’ feelings of mastery, which can subsequently reduce the negative consequences that partners experience as a result of the patient’s ABI. Mastery can be measured with the Caregiver Mastery Scale. The Caregiver Mastery Scale has not yet been validated for partners of patients with ABI.

The overall aim of this thesis was to gain more knowledge about the impact of ABI on the patients' partners in order to improve support for these partners. In this thesis we aimed (1) to in-depth investigate the impact for partners of patients with ABI, (2) to investigate the dyadic relationships within patient-partner couples and (3) to develop a blended care intervention for partners of patients with ABI and to validate a caregiver-specific instrument to evaluate the effect of the intervention.