Tableaux de données probantes et liste de reference (en anglais)
Following stroke, patients, families and caregivers are typically faced with multiple life changes and challenges as the patient transitions between the stages of recovery. Gallacher et al. (2013) reviewed 69 qualitative studies examining the concept of patient burden following stroke, highlighting the impact it may have on the effectiveness of interventions and patient satisfaction with health care services. The authors identified the components of stroke recovery that were particularly burdensome to patients including receiving information, interacting with others, comparing treatment options, managing in different environments (acute care, inpatient rehabilitation, community, society) and adjusting to daily activities. Caring for a person following a stroke may also have a considerable impact on the health and vocational status of caregivers. Hayes et al. (2009) conducted telephone interviews with 275 veterans who had sustained a first-ever stroke and their informal caregivers to explore the association between caregiver characteristics and the development of injuries. Caregivers who reported a physical injury were more likely to report higher levels of burden, provided more hours of care per week, exhibited more depressive symptoms and fewer healthy days per month compared to caregivers reporting no injury. The most common type of injury reported was a back injury and 53% of injured caregivers stated that the injury interfered with their ability to provide care. Significant predictors of injury were higher caregiver burden (OR=1.62, 95% CI 1.14-2.31, p=0.008) and depression (OR=1.10, 95% CI 1.04-1.17, p=0.001). Ko et al. (2007) interviewed 132 caregivers and reported that while 52% were working full time or part-time, prior to the stroke, the majority of working caregivers reported reducing their hours of paid work, or missing work, while 9 caregivers retired or resigned. Rochette et al. (2007) reported that 6 months following stroke, 35.2% of spouses, of a sample of 54 had a high level of burden (Caregiver Strain Index score ≥7) and 17% were identified with possible depression (Beck Depression Inventory BDI score ≥10).
Families and caregivers are often highly engaged in supporting the stroke patient through their recovery. In addition to a patient requiring support as they recover, families and caregivers will often experience needs at equivalent time points. The “timing it right” framework conceptualized by Cameron & Gignac (2008) highlighted the stages that a caregiver may experience as the patient recovers from a stroke. The authors identified 5 stages in the framework, defined by the changing information, training, emotional and feedback needs of caregivers. These phases include (Cameron & Gignac, 2008): 1) Event/Diagnosis, 2) Stabilization, 3) Preparation, 4) Implementation, and 5) Adaptation. The first two phases (event/diagnosis and stabilization) typically occur in the acute care setting, preparation in the acute or rehabilitation setting, and the last two phases in the home. As a patient moves from the hospital to the home environment, the information and training needs of the caregiver increase in scope and complexity. The “timing it right” framework is helpful in demonstrating that the needs of patient, family and informal caregiver are constantly changing and evolving and should therefore be reassessed at each stage of care.
The needs of patients and their caregivers have been explored in several qualitative studies using in-person or telephone interviews. Similar themes emerged across studies. Cameron et al. (2014) included 16 patients recruited from an inpatient rehabilitation stroke facility and 15 informal caregivers, who were interviewed following their first weekend pass from inpatient rehabilitation and again 4 weeks following discharge home. Twenty health-care professional (HCP) were also interviewed. Three key themes emerged including issues surrounding preparing patients for safe return home. Patients discussed the need to feel safe in the home environment while caregivers discussed their need to feel supported. Assessing the patient for readiness was a key theme discuss by HCPs. Patients noted gaining insight into what life would be like, and caregiver evaluated their abilities to care for stroke survivor. Patients and caregivers discussed the range of emotions they experienced and how their experienced changes before and after the weekend pass. In a similar study including 24 informal caregivers to stroke survivors and 14 HCP(Cameron et al. 2013), the themes emerged from both the caregivers and the HCP concerned the type and intensity of support needed, who provides support and the method of providing support and the primary focus of care. Creasy et al. (2013) interviewed 17 family caregivers close to the point of discharge from hospital and the again within 4 months of discharge. In the first interview, caregivers expressed information needs related to their role as caregiver in preparation for discharge home and expressed concerns for their own emotional support needs and their ability to provide emotional support. During the second interview caregivers discussed their experiences with caregiver-provider interactions, some of which were positive, others, negative. The caregivers of 90 patients were interviewed one year following stroke (Smith et al 2014). Caregivers reported delays and barriers waiting for applications/funding for alterations to make the home more accessible, having to provide care in the immediate post-discharge period with no skills training and lack of follow-up with GPs. They also described difficulties coping with patients’ quick anger and emotional lability and lack of attention to their physical and emotional ability to provide care.
Interventions to provide support to patients and caregivers during the transition from hospital to home have been examined, which include telephone contacts, online support and home visits from a support worker. The results of many of these studies have been equivocal, with improvements on psycho-social outcomes, without significant improvements in physical functioning. In the YOU CALL-WE CALL trial (Rochette et al. 2013), 186 patients discharged home within 3 weeks of admission to hospital following a mild stroke were randomized to a YOU CALL group or a WE CALL group. Patients in the YOU CALL group were provided with the name and phone number of a trained healthcare professional whom the patient could call with questions. Patients in the WE CALL group received scheduled telephone, internet and paper documentation support, initiated by the trained professional over a 6-month period. During the study period, only 6 patients in the YOU CALL group phoned. Although patients in the WE CALL group perceived the intervention positively, there were no significant differences between groups on any of the primary (unplanned use of health services and QoL) or secondary outcomes (planned use of health services, depression, social participation) at 6 months. The benefits of a Family Support Organizer (FSO), a service in the UK that provides information, emotional support and prevention advice for families and patients, have been evaluated in several trials. Tilling et al. (2005) randomized 340 patients with first-ever stroke and their caregivers to receive support from a FSO or standard outpatient care. There was an average of 15 telephone or face to face contacts with the FSO. There were no significant differences between groups in mean overall Patient Satisfaction Scale scores, the primary outcome, at either 3 months (7.6 vs. 7.4, p=0.80) or one year (8.0 vs. 7.8, p=0.80). Patients in the FSO group fared worse on some of the secondary outcomes. In another trial examining FSO services (Lincoln et al. 2003), there were no differences between groups in median General Health Questionnaire 12 scores, BI scores or Nottingham EADL scores at either 4 or 9 months following an average of 6.4 in-person, or telephone contacts. However, patients in the FSO group were more knowledgeable about stroke, stroke prevention, community services, and emotional support. Grant et al. (2002) randomized 74 primary, informal caregivers to either a Social Problem Solving Telephone Partnership (SPTP) intervention, sham intervention, or a control group, shortly following discharge from hospital. The STPT intervention involved the caregiver training to manage problems and cope with stress, with a trained nurse in the home, followed by weekly and bi- weekly telephone contacts to maintain skills. The sham intervention group received telephone contacts, enquiring about health services they had received, while the control group received discharge planning services only. By 13 weeks following discharge, caregivers in the intervention group had significantly higher sub scores on 4 components of the SF-36 (vitality, mental health, emotional role functioning and social role functioning), and demonstrated better preparedness, and less depression.