RESUMO
Background: After discharge home, stroke survivors and their informal caregivers face a significant lack of support and information which accentuates their psychosocial burden. Online resources might provide this support and address psychosocial needs, but existing online stroke programmes mainly target functional rehabilitation. We aimed to map the existing literature on online resources that have been evaluated in stroke rehabilitation and aimed at reducing psychosocial impact in stroke survivors and informal caregivers. Methods: MEDLINE was searched (2010-2024) to identify studies investigating online resources targeting psychosocial health. Studies were selected and extracted independently by two reviewers. We described the content, use, and psychosocial impact of these interventions using a narrative approach. Results: Eleven studies were included in the review, reporting 10 online resources (two studies relating to the same resource). Online resources were heterogeneous: eight information/resources websites, one mobile app, and one forum. Five online resources were dedicated to stroke survivors, four to stroke survivors and their informal caregivers, and one to informal caregivers. Two randomized controlled trials reported a significant decrease in depressive symptoms associated with the use of online resources. Stroke survivors and informal caregivers find online resources useful and acceptable to address their psychosocial needs. Conclusions: Few online stroke resources have been designed and evaluated to support post-stroke psychosocial rehabilitation. Further larger-scale research needs to study the impact of these interventions on psychosocial recovery over time.
RESUMO
BACKGROUND: Stroke affects many aspects of life in stroke survivors and their family, and returning home after hospital discharge is a key step for the patient and his or her relatives. Patients and caregivers report a significant need for advice and information during this transition period. Our hypothesis is that, through a comprehensive, individualised and flexible support for patients and their caregivers, a patient-centred post-stroke hospital/home transition programme, combining an Internet information platform and telephone follow-up by a case manager, could improve patients' level of participation and quality of life. METHODS: An open parallel-group randomized trial will be conducted in two centres in France. We will recruit 170 adult patients who have had a first confirmed stroke, and were directly discharged home from the stroke unit with a modified Rankin score ≤3. Intervention content will be defined using a user-centred approach involving patients, caregivers, health-care professionals and social workers. Patients randomized to the intervention group will receive telephonic support by a trained case manager and access to an interactive Internet information platform during the 12 months following their return home. Patients randomized to the control group will receive usual care. The primary outcome is patient participation, measured by the "participation" dimension score of the Stroke Impact Scale 6 months after discharge. Secondary outcomes will include, for patients, quality of life, activation, care consumption, as well as physical, mental and social outcomes; and for caregivers, quality of life and burden. Patients will be contacted within one week after discharge, at 6 and 12 months for the outcomes collection. A process evaluation alongside the study is planned. DISCUSSION: Our patient-centred programme will empower patients and their carers, through individualised and progressive follow-up, to find their way around the range of available healthcare and social services, to better understand them and to use them more effectively. The action of a centralised case manager by telephone and the online platform will make it possible to disseminate this intervention to a large number of patients, over a wide area and even in cases of geographical isolation. TRIAL REGISTRATION: ClinicalTrials NCT03956160 , Posted: May-2019 and Update: September-2021.