CARE4BRAIN: personalized CAREgiver and patient support in rehabilitation FOR patients with acquired BRAIN Deficits.

The detrimental effects of living with acquired brain injury (ABI) include loss of independence in everyday activities, reduced self-efficacy, perceived health status, and societal participation and depression, affecting not only the patient but caregivers as well. The transition from the rehabilitation treatment in a rehabilitation setting to independent functioning in the home situation is experienced as a significant hurdle by patients with ABI and their families. The following aspects are important to optimize this transition: a) the carer (mostly partner), and home front must become actively involved in the rehabilitation services, and b) the rehabilitation treatment must extend into the home situation including monitoring and continued professional support. Long-term results of rehabilitation are most successful when ongoing support and supervision is available for those who need it, preferably with adequate e-health support. The patient association ‘Samenwerkende Hersenletsel Verenigingen’ also recognizes that active coaching of both patient and the caregiver in the recovery process of stroke patients towards return to independent living is a neglected issue in ABI management. The purpose of the CARE4BRAIN program is to evaluate and implement two interventions aimed at optimizing and facilitating the transition to independent functioning at home with emphasis on the patient - caregiver interaction (i.e. personalized supported discharge), without increasing the need for professional care. To this end, two randomized clinical trials are proposed: 1. The CARE4patient trial in which caregiver (often partner) and patient exercise together and the partner acts as an exercise –coach and 2. The CARE4carer trial in which the partner/caregiver is taught self-control and self-management strategies. The patient and caregiver are encouraged to actively participate in the rehabilitation process and increase self-efficacy by modules containing physical exercises or self-management strategies through face to face therapy, supported by application of an e-health and tele-rehabilitation infrastructure. Rehabilitation outcomes for patient and partner will be evaluated in terms of self-efficacy, self-management, Activities of Daily Living (ADL), family functioning, mood, perceived stress, societal participation and quality of life. The CARE4patient and CARE4carer trial are two complementary trials with a common set of measurements of outcomes on self-control and self-management in patients with ABI and their caregivers when patients are discharged to their own home environment. These goals match closely with the desire of ZonMw for more attention towards self-management, self-efficacy and empowerment, allowing patients to return to their independent living at home with adequate quality of life. A key part in both trials will be the support of e-health services to optimize discharge allowing coaching of the partner of the ABI-patient in applying physical exercises (CARE4patient) and to support the partner to cope with the existing burden (CARE4carer).