TY  - JOUR
A1  - Jírů-Hillmann, Steffi
A1  - Gabriel, Katharina M. A.
A1  - Schuler, Michael
A1  - Wiedmann, Silke
A1  - Mühler, Johannes
A1  - Dötter, Klaus
A1  - Soda, Hassan
A1  - Rascher, Alexandra
A1  - Benesch, Sonka
A1  - Kraft, Peter
A1  - Pfau, Mathias
A1  - Stenzel, Joachim
A1  - von Nippold, Karin
A1  - Benghebrid, Mohamed
A1  - Schulte, Kerstin
A1  - Meinck, Ralf
A1  - Volkmann, Jens
A1  - Haeusler, Karl Georg
A1  - Heuschmann, Peter U.
T1  - Experiences of family caregivers 3-months after stroke: results of the prospective trans-regional network for stroke intervention with telemedicine registry (TRANSIT-Stroke)
T2  - BMC Geriatrics
N2  - Background
Long-term support of stroke patients living at home is often delivered by family caregivers (FC). We identified characteristics of stroke patients being associated with receiving care by a FC 3-months (3 M) after stroke, assessed positive and negative experiences and individual burden of FC caring for stroke patients and determined factors associated with caregiving experiences and burden of FC 3 M after stroke.

Methods
Data were collected within TRANSIT-Stroke, a regional telemedical stroke-network comprising 12 hospitals in Germany. Patients with stroke/TIA providing informed consent were followed up 3 M after the index event. The postal patient-questionnaire was accompanied by an anonymous questionnaire for FC comprising information on positive and negative experiences of FC as well as on burden of caregiving operationalized by the Caregiver Reaction Assessment and a self-rated burden-scale, respectively. Multivariable logistic and linear regression analyses were performed.

Results
Between 01/2016 and 06/2019, 3532 patients provided baseline and 3 M-follow-up- data and 1044 FC responded to questionnaires regarding positive and negative caregiving experiences and caregiving burden. 74.4% of FC were older than 55 years, 70.1% were women and 67.5% were spouses. Older age, diabetes and lower Barthel-Index in patients were significantly associated with a higher probability of receiving care by a FC at 3 M. Positive experiences of FC comprised the importance (81.5%) and the privilege (70.0%) of caring for their relative; negative experiences of FC included financial difficulties associated with caregiving (20.4%). Median overall self-rated burden was 30 (IQR: 0–50; range 0–100). Older age of stroke patients was associated with a lower caregiver burden, whereas younger age of FC led to higher burden. More than half of the stroke patients in whom a FC questionnaire was completed did self-report that they are not being cared by a FC. This stroke patient group tended to be younger, more often male with less severe stroke and less comorbidities who lived more often with a partner.

Conclusions
The majority of caregivers wanted to care for their relatives but experienced burden at the same time. Elderly patients, patients with a lower Barthel Index at discharge and diabetes are at higher risk of needing care by a family caregiver.

Trial registration
The study was registered at “German Clinical Trial Register”: DRKS00011696. https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011696
KW  - family caregiver
KW  - informal care
KW  - stroke
KW  - stroke care
KW  - telemedicine network
Y1  - 2022
UR  - https://opus.bibliothek.uni-wuerzburg.de/frontdoor/index/index/docId/31333
UR  - https://nbn-resolving.org/urn:nbn:de:bvb:20-opus-313330
VL  - 22
ER  -