Community Reintegration

The post-discharge period is consistently reported by stroke survivors and their families to be a stressful and challenging time as they adjust to new roles and potentially altered functional and cognitive abilities of the stroke survivor.^{530, 531} Patients and their families often lose the social, emotional, and practical support offered by an inpatient stroke service.³⁹ The evidence shows that when there is coordination of care beyond the inpatient setting and community support services are provided, patient outcomes and patient and caregiver satisfaction improves.^{39, 532}

In children, regular follow-up is necessary to screen for other neurologic sequelae, as 30 percent of pediatric stroke survivors develop concurrent neurologic complications, including seizures, migraine, headaches, and movement disorders that may not manifest in the immediate acute and post-acute phases of stroke.

• Adequate follow-up care providers in all provinces and territories to support community reintegration of stroke survivors.
• Assistance for stroke survivors and their families with an evolving care plan and regular follow-up assessments.
• Healthcare professionals and caregivers in the community and long-term care settings with stroke care expertise and access to ongoing education.
• Ongoing support in the form of community programs, respite care, and educational opportunities available to support caregivers who are balancing personal needs with caregiving responsibilities.
• Strategies to assist stroke survivors to maintain, enhance, and develop appropriate social support, and to re-engage in desired vocational, social, and recreational activities.
• Lists of community resources and processes to access these resources provided to all patients and families.

1. Proportion of patients who are discharged from acute care who receive a referral for home care or community supportive services.
2. Percentage of readmissions to acute care for stroke-related causes following discharge to the community, stratified by type of stroke.
3. Percentage of stroke patients with documentation that information was given to patient or family on formal and informal educational programs, care after stroke, available services, process to access available services, and services covered by health insurance.
4. Number of patients referred to a secondary prevention team by the rehabilitation team.
5. Number of visits to primary care within specified time frames for stroke-related issues.
6. Number of visits to an emergency department within specified time frames.
7. Percentage of patients who return home following stroke rehabilitation who require community health services (e.g., home care or respite care).
8. Length of time from hospital discharge (whether from acute care or inpatient rehabilitation) to initiation of community health services.
9. Frequency and duration of community health services, stratified by the type of service provided.
10. Number of readmissions from stroke rehabilitation to acute care for stroke-related causes.
11. Percentage of patients who return to the community from acute hospital stay or following an inpatient rehabilitation stay who require admission to long-term care or a nursing home within six months or one year.
12. Median wait time from referral to admission to nursing home, complex continuing care or long-term care facility.
13. Documentation to indicate that assessment of fitness to drive and related patient counseling was performed.
14. Number of patients referred for driving assessment by occupational therapist in the community.
15. Measure of burden of care for family and caregivers of stroke survivors living in the community.

Measurement Notes

• Performance measure 1: data may be obtained from inpatient chart documentation or community support services documentation. Informal education or education received by primary care providers may be difficult to track unless specific audit tools are developed and implemented in local areas. Also refer to some of the performance measures listed in recommendation 2.1.
• Emergency department visits can be tracked through the Canadian Institute for Health Information database for participating institutions or hospital records if the patient returns to the emergency department of the hospital where inpatient stay occurred.
• The Canadian Institute for Health Information holds an administrative data set for complex continuing care and long term care, which uses a minimal data set that is mandated in several regions across Canada. This data set uses the Resident Assessment Instrument tool for assessing functional status. At this time there are no validated comparison models between the Functional Impact Measure and the Resident Assessment Instrument.
• Hospital readmissions from inpatient rehabilitation to acute care can be obtained from hospital administrative data nationally and provincially.
• Visits to primary care and indicators related to information and education are difficult to measure. They could be obtained through surveys and standardized audit tools at the local or regional level.

• FIM ® Instrument (Functional Independence Measure)
• Chedoke-McMaster Stroke Assessment
• Reintegration to Normal Living Index
• Leisure section of the Assessment of Life Habits (LIFE-H)
• Stroke Impact Scale

The post-discharge period is consistently reported by stroke survivors and their families to be a difficult time.^{530, 531} Patients and their families often lose the social, emotional and practical support offered by an inpatient stroke service.³⁹ In one study, only 10 percent of families were actively in contact with professional rehabilitation services after hospital discharge.⁵³⁰ In general, caregivers cope with physical limitations better than cognitive or emotional ones. When the psychosocial needs of patients and their caregivers are regularly addressed through social support, improved outcomes are observed, including reduced caregiver burden, reduced incidence of anxiety, reduced emotionalism and depression, reduced hospital readmissions and failed discharges, and facilitated reintegration of the patient in family and social roles.^{11, 530} The evidence shows that when support services are provided, patient and caregiver satisfaction improves.^{39, 532}

Ongoing rehabilitation (beyond six months after stroke) can further improve activities of daily living and fitness. Stroke rehabilitation involves programs to reduce impairments, enhance recovery and adapt to persisting disabilities. There is now evidence to show that after stroke, patients continue to decline. The risk of deterioration in ability can be reduced or reversed by further rehabilitation input.³⁹ Therapy-based rehabilitation services can reduce poor outcomes (i.e., prevent hospital readmission), promote participation in desired activities, increase activities of daily living and reduce external home care supports. For every 100 stroke patients living in the community and receiving therapy-based rehabilitation services,  seven patients are spared a poor outcome.^{16, 39, 474}

“Rehabilitation after stroke must also address ‘participation.’ This may require planned withdrawal of medical and rehabilitation services and substituting them with leisure and social activity to encourage independence and reintegration to normal life.”³⁹ The interprofessional team should encourage the use of community resources such as peer and/or family support groups, social and recreational activities and transportation resources. “Community support can help buffer the effects of disability on the patient, family and caregivers. Living with disabilities after a stroke is a lifelong challenge. For many stroke patients and their families, the real work of recovery begins after formal rehabilitation.”¹¹ Community service providers would serve 3 major roles for patients and caregivers: provide caregiver training related to life at home following stroke; provide feedback and guidance regarding linkages to community resources; and, conduct follow-up with stroke survivors and caregivers at regular intervals.

Studies looking at quality of life up to 4 years post stroke found the percentage of depression for caregivers is high and caregivers should receive ongoing assessment. Anderson examined the effect of stroke on 173 patients and their family caregivers, finding that more than a third of people who cared for stroke patients at home regarded their own health as only fair or poor.⁵³⁰ The author reported that access to help from professional rehabilitation services was patchy and inconsistently available, and that “care became a burden rather than a pleasure, social function and personal relationships deteriorated, and contact with the outside world slipped away.” Low mood was a major influence of outcome and a main component of quality of life. For caregivers, it contributed substantially to the burden of care. To alleviate the suffering, Anderson stated that the social, psychological, family and economic aspects of stroke must be directly addressed.⁵³⁰ Pound and associates, in exploring the components of care most valued by patients, undertook a qualitative study using in-depth interviews of stroke patients and their caregivers 10 months after the stroke.⁵³² These researchers found that as the acute phase of stroke passes, patients and caregivers increasingly desired support related to rehabilitation, discharge, prognosis, etc. The researchers stated, “more information is needed about the stages of the stroke caregiver so that care may be tailored to respond sensitively and flexibly to the different stages.”

Stanton examined the process of adaptation for both the person who had the stroke and for their partner.⁵³¹ Using in-depth interviews and observations of stroke survivors and their partners four to seven months after stroke, Stanton found that the majority of “adaptation” to stroke occurred upon returning home (after discharge). Role strain, physical exhaustion and the quality of the relationship between the stroke survivor and the partner had an ongoing influence on post-stroke adaptation. Stanton indicated, “An emphasis on physical recovery and the management of self-care tasks in rehabilitation appears to be insufficient to facilitate the achievement of clients’ goals.” She also noted that access to rehabilitation services in the clients’ home and community environment may help clients and partners to remove barriers that limit resumption of past activities, break the “downward cycle that can lead to partner exhaustion and depression” and improve quality of life.

In a systematic review of randomized controlled trials of stroke patients, the effects of therapy-based rehabilitation services targeted toward patients residing in the community was analyzed.⁴⁷⁴ Reviewers sought to identify the proportion of patients who had deteriorated or were dependent in performing personal activities of daily living at the end of follow-up. The main results identified a heterogeneous group of 14 trials including 1617 patients. Therapy-based rehabilitation services reduced the odds of a poor outcome (Peto OR 0.72, 95% CI 0.57–0.92; p = 0.009) and increased personal activity of daily living scores (standardized mean difference 0.14, 95% CI 0.02–0.25; p = 0.02). For every 100 stroke patients resident in the community receiving therapy-based rehabilitation services, 7 (95% CI 2–11) patients would be spared a poor outcome, assuming 37.5 percent would have had a poor outcome with no treatment. “Comprehensive understanding and involvement of the person, family/caregiver, and environmental system are required for stroke rehabilitation. Without adequate resources and support it is difficult for patients to sustain the gains made during inpatient care or to make further progress in the community. It is essential that the treatment team know the patient (including history, expectations, coping style, resources and emotional support system) in order to fully engage him/her in the treatment process. Motivation and hope for improvement are critical factors for functional improvement.”^{11, 14}

Early evaluation of physical and cognitive disability is the key to preventing avoidable complications and to planning rehabilitation. Following childhood stroke, there may be significant issues in accessing therapy. A coherent care plan for rehabilitation is integral to the process and should take into account all of the child’s needs and practical resources to ensure the needs are met in the community.⁴¹ Ongoing follow-up and assessment are crucial to the well-being of the child and family, as lasting cognitive deficits will affect all areas of daily functioning.