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Supporting Patients, Families and Caregivers Following Stroke

2016 UPDATE
July, 2016

The Canadian Stroke Best Practice Recommendations for Stroke Rehabilitation, 5th Edition (2015) is published in the International Journal of Stroke (IJS) and available freely online. To access the specific recommendations for Managing Transitions of Care Following Stroke, and all other sections of the Stroke Rehabilitation recommendations, please click on this URL which will take you to the recommendations online in the IJS: http://wso.sagepub.com/content/early/2016/07/21/1747493016660102.full.pdf+html

For the French version of these recommendations, open the appendix at this link: http://wso.sagepub.com/content/suppl/2016/07/21/1747493016660102.DC1/CSBPR_Transitions_of_Stroke_2016_IJS_French_Suppl.pdf

All other supporting information, including performance measures, implementation resources, evidence summaries and references, remain available through www.strokebestpractices.ca, and not through the IJS.  Please click on the appropriate sections on our website below for this additional content.

Box 1: Transitions of Care Checklist

Support for patient, families and caregivers may include:

  • Written discharge instructions and recommendations that identify collaborative actions plans, follow-up care and goals
  • Access to a designated contact person in the hospital or community for care continuity and queries
  • Ongoing access to and advice from health and social service organizations appropriate to needs and stage of transition and recovery
  • Links to and information about local community agencies such as stroke survivor groups, peer survivor visiting programs, meal provider agencies, and other services and agencies
  • Shared decision making/participation regarding transitions between stages of care
  • Counseling, preparation and ongoing assessment for adjustment to change of living setting, change in physical needs and increased dependency, change in social roles and leisure activities, impact on other family members (e.g., spouse or partner, children), loss of home environment, and potential resource issues
  • Access to restorative care and active rehabilitation to improve and/or maintain function based on the individualized care plan
  • Advance care planning, palliative care and end-of-life care as applicable
  • Where possible, access to peer (survivor/family), who has experienced the transition and who can help the patient better understand the transition
  • Accurate and up to date information about the next care setting, what the patient and family can expect, and how to prepare.
Rationale

This recommendation supports the following goals:  to emphasize the need for a holistic approach to care; to help patients, families and caregivers to navigate the healthcare system, particularly following the initial acute stage of stroke care; to define the various components of support;   to focus on patients and their families, highlighting the patient and family-centered care approach; and to address needs beyond the physical impact of stroke.

Stroke is a life-altering event that may require an extended recovery period and often leaves patients with ongoing functional impairments. It also has an impact on others close to the patient, as increasingly, families and caregivers are expected to assume roles, tasks and responsibilities that may be beyond their current skills and knowledge. This increases the caregiver burden, which can result in depression among caregivers of stroke patients (as high as 60 percent has been reported). Similar post-stroke depression rates occur in patients and are linked to poorer recovery outcomes.

Increased screening, assessment and surveillance of patient, family and caregiver needs and coping will provide a holistic patient and family-centered approach to stroke care and optimally lead to better outcomes and adaptation.

System Implications

Care transitions take place across the stroke continuum, including primary care, the emergency department, acute care, rehabilitation settings, complex care/transitional bed settings, long-term care and community settings.  Processes and mechanisms should be in place in all these settings to address patient, family and  caregiver support using an individual approach, including:

  • Protocols to involve patients and families in healthcare team transition planning meetings and collaborative decision-making regarding goal setting at all transition points.
  • Resources and mechanisms to plan and deliver community-based services which consider the needs of the survivor and family/caregiver (e.g., home care services, psychological support).
  • Models of care that include technology such as telemedicine, regular telephone follow-up and web-based support.
  • Appropriately resourced hospitals, rehabilitation facilities, home care services, long-term care and other community facilities that care for stroke patients, with identified contact people and case managers/system navigators to coordinate manage stroke care transitions.
  • Ongoing education and training of healthcare professionals on patient and family-centred stroke care in all settings that care for stroke patients.
  • Opportunities for education and training for stroke survivors, families and caregivers to provide peer support when requested.
  • Access to self-management support services through telemedicine technologies, especially in rural areas and where there are local resource gaps.
Performance Measures
  • The change in burden of care for family members and caregivers measured at transition points throughout the recovery period and following changes in patient health status.
  • The number and proportion of patients diagnosed with post-stroke depression, measured at each transition point as a proportion of all stroke patients.
  • The number and frequency of patients readmitted to an emergency department or acute inpatient care for reasons related to physical decline or failure to cope, following an initial stroke hospital stay.

Measurement Notes

  • Standardized and validated measures of depression and caregiver burden should be used to track occurrence and changes to these areas.
  • Failure to cope diagnosis should be made based on appropriate ICD10 codes.
  • Data on readmissions can be accessed through the Canadian Institute for Health Information NACRS ad DAD databases.
Implementation Resources and Knowledge Transfer Tools

Health Care Provider Information

Patient Information

Health Care Provider Information

Patient Information

Summary of the Evidence

Evidence Table and Reference List

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.