PhD ceremony Ms. H.M. Geschwindner: Long-term outcomes in stroke rehabilitation: patients and informal caregivers

PhD ceremony: Ms. H.M. Geschwindner, 12.15 uur, Academiegebouw, Broerstraat 5, Groningen

Dissertation: Long-term outcomes in stroke rehabilitation: patients and informal caregivers

Promotor(s): prof. W.J.A. van den Heuvel

Faculty: Medical Sciences

Stroke is a leading cause of persisting disabilities. This calls for rehabilitation to restore functioning and to pave the way for community reintegration. In German speaking Switzerland a cross-sectional study was conducted on a sample of patients (n=287) suffering from first-ever stroke one to three years post-discharge and their informal caregivers. The sample was recruited from a single neuro-rehabilitation facility that had implemented a protocol for goal setting and evaluation based on the ICF. Goal categories referred to post-discharge living arrangements. Of all post-stroke patients approached, 174 filled in a questionnaire to evaluate their extent of goal attainment, community reintegration and their need of daily assistance. In addition, all medical records were screened for goal attainment during in-patient rehabilitation. The majority of patients did attain their goals at discharge, while only half of them did so post-discharge. Goal attainment at discharge was related to cognitive functioning. Post-discharge, it was related to physical functioning, help from family members and continuing therapies immediately after discharge. To assess community reintegration we applied the German version of the ‘Reintegration in Normal Living’ Index. Test results confirmed sound psychometric properties. We found community reintegration to be associated with mobility and communication at the time of questionnaire completion.

Independent from rehabilitation outcomes stroke results in a long lasting demand in daily care and assistance. Here, informal caregivers were asked to provide additional information. Among all respondents we identified 132 dyads of stroke survivors and informal caregivers. If needed, informal care is mostly provided by the partner alone. Five patterns of informal care were identified in relation to stroke survivors’ limitations and number of persons involved. Even three years post-discharge 30 patients are still in need of daily informal care giving. Providing informal care comprises a substantial burden whether caring for a circumscribed or an indefinite period. Literature reports on changes in burden over time which is seldom referred to a prolonged time period. To investigate caregiver burden we applied a German version of the ‘Caregiver Burden Inventory’ which has been validated for the first time. The psychometric properties were satisfying. The informal caregivers in our sample reported a rather low extend of burden experienced. We identified sense of mastery as a salient determining factor of caregiver burden. Longitudinal research is needed to better describe changes over time in post-stroke patients and informal caregivers. Specific interventions are needed for both to promote positive long-term outcomes.