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Section 6.0

Transitions

4th Edition
2012-2013 UPDATE October 29, 2013
 

Taking Action in Stroke Transitions of Care

Taking Action is an imperative for stroke systems of care, healthcare providers, patients, families, and the broader community. The primary underpinning of ‘taking action in stroke transitions of care’ is to provide patient and family-centred care across all transition points and ensure effective and efficient transfers of care and information to the next stage and setting of care. By not carefully monitoring the later transition points in the continuum of stroke care, it could put patients and families at risk for safety and hinder their progress made during the initial recovery stage.

Figure 6.1: Pathways for People with Stroke to Live Fully in the Community

Pathways for People with Stroke to Live Fully in the Community
Developed by Southwestern Ontario Stroke Strategy, 2008. Reproduced with permission.

All members of the healthcare team for stroke patients and families are responsible for Taking Action to ensure successful transitions and facilitate a successful return to the community following stroke. Figure 6.1 depicts a pathway and steps for successful transitions, developed through an extensive consensus process (Gilmore et al, 2008).

Key components of successful transitions include:

  • collaborative goal setting between the healthcare team, patients and families, where patients and family members actively participate in discussions and planning with the healthcare team and are involved in shared decision-making;
  • ongoing education for patients, families and informal caregivers that reinforces key information and verifies understanding;
  • patient, family and informal caregiver education needs to occur for all stroke patients, regardless of setting; this includes in the emergency department, primary care, acute inpatient care (regardless of location of patient within the hospital), rehabilitation settings, outpatient and community settings;
  • skills training appropriate to needs and goals of patients to facilitate safe transitions;
  • discharge planning that begins soon after stroke admission and all relevant support services, such as home assessments and access to ambulatory and community-based rehabilitation;
  • assessment of family and informal caregiver capacity to provide ongoing care for the patient with stroke, as well as their individual support needs and potential burden of care;
  • timely transfer of medical information between stages of care to ensure smooth transitions in care;
  • identification of and linkages to community resources, long term care and home-based care;
  • ongoing surveillance of physical, psychological, social and emotional recovery, coping and adaptation following discharge from inpatient acute care and rehabilitation settings.

A coordinated and seamless system taking all these components into account will minimize challenges and complications for patients and families between stages and settings for stroke care, and lead to better recovery outcomes. Stroke case managers and/or stroke system navigators are valuable additions to the stroke care team, and where resources permit should be made available to patients, families and informal caregivers. Stroke navigators empower patients and families to be involved in their own care, build self-management skills and confidence, and aid in access to community resources, support groups and linkages. Providing support mechanisms like these may reduce the burden to the health system and to health care professionals providing reactive care; evidence shows that this is typically more costly to the health system and an increased care burden on health providers.

Taking Action in the area of stroke care transitions is also directed to researchers and research funding organizations. The body of evidence for many of the topics addressed in this chapter based on observational studies, small qualitative research initiatives and cohort studies. In many areas, randomized controlled trials and systematic reviews are lacking. Even with the availability of lower levels of evidence, the topics covered in this chapter have strong significance for patients and families and therefore are presented based on moderate evidence and expert opinion.

Highlights of Managing Stroke Transitions of Care Update 2013

The 2013 update of the Managing Stroke Transitions of Care Chapter of the Canadian Best Practice Recommendations for Stroke Care reinforces the growing and changing body of research evidence available to guide ongoing screening, assessment and management of patients who have experienced a stroke and ensure they move from one phase and stage of care to the next without ‘falling through the cracks” or ‘getting lost out of the system’.

Key messages for 2013 and significant changes to previous recommendations include:

  • Be Aware: strong emphasis on educating patients and families to understand the nature and cause of stroke, the signs and symptoms, the impact and the ongoing needs of the patient who has experienced a stroke;
  • Be Aware: that stroke affects the whole family unit and places a burden on family members both in the immediate decision-making and management, and in the ongoing and long-term recovery for the patient who experienced the stroke;
  • Be Aware: these recommendations introduce the experience of post-stroke fatigue that is under-recognized and under-diagnosed among stroke patients. It is important for healthcare professionals to discuss fatigue and prepare patients for the experience of fatigue, and energy-conservation techniques, otherwise fatigue can negatively impact recovery and increase the risk for post-stroke depression;
  • Be Involved: The patient, family members and informal caregivers should be considered active members of the stroke team and be involved in decision-making, goal setting and care planning throughout the stroke care continuum;
  • Take Action: these stroke recommendations clearly state that all healthcare professionals are responsible for delivering education and support on an ongoing basis, regardless of patient location within the healthcare system, including providing new information at the right teachable time, reinforcing previously taught information, and assessing ongoing learning needs; these information needs evolve as the patient moves through the continuum of care and into longer term recovery;
  • Take Action: these stroke recommendations promote self-management and active participation in ongoing care, following rehabilitation plans and actively engaging in recovery, and following though with decisions to take prescribed medications;
  • Take Action: these stroke recommendations introduce new educational recommendations and assessment steps for both home-care professionals and staff members working with stroke patients in long-term care facilities.

Managing Stroke Transitions of Care Update 2013 Resource Package Includes:

  1. Stroke Best Practice Recommendations for Managing Stroke Transitions of Care, evidence summaries and evidence tables with reference list
  2. Taking Action Towards Optimal Stroke Care manual and educational slide deck on stroke transitions of care
  3. Winnipeg Regional Health Authority (WRHA) Transition Management Pathway
  4. Canadian Stroke Best Practices Assessment Tool Summary Tables
  5. Links to additional implementation resources for all topic areas

Stroke Transitions of Care Model and Definitions

Transitions of Care

 

Figure 6.2: The Canadian Best Practices Model for Transitions of Care Following a Stroke

The Canadian Stroke Transitions of Stroke Care Model identifies the most common points of transition for stroke patients along the continuum of care. The arrows are presented as unidirectional for simplicity of the diagram. However, in many instances stroke patients will move back and forth between different stages or settings of care during short-term and long-term recovery and reintegration.

Stroke Transitions of Care Definitions

  • Transition refers to the movement of patients among healthcare locations, providers, different goals of care, and across the various settings where healthcare services are received. Refer to Figure 6.2 The Canadian Best Practices Model for Transitions of Care Following a Stroke.
  • Transition management includes working with patients, families, and informal caregivers to establish and implement a transition plan that includes goal setting and that has the flexibility to respond to evolving needs. Successful transition management requires inter-professional collaboration between healthcare providers, clients, families, and informal caregivers. It encompasses the organization, coordination, education, and communication required as patients, families and informal caregivers move through the stages and settings for stroke treatment, recovery, reintegration, adaptation, and end-of-life care.
  • The goal of transition management is to facilitate and support seamless patient, family, and informal caregiver transitions across the continuum of care, and to achieve and maintain optimal adaptation, outcomes, and quality of life for the family system following a stroke. This incorporates physical, emotional, environmental, financial and social influences.
  • Support for patients and families following stroke refers to providing care, services, and facilitate linkages to resources to ensure that patient, family and informal caregiver needs are met throughout the journey of recovery from a stroke, from many perspectives. The goal of patient, family and informal caregiver support is to equip each individual with tools and information to manage their recovery or the recovery of a loved one after stroke and optimize participation and fulfillment of life roles; tailored to unique needs, coping mechanisms, strengths, challenges and living situation.
  • Stroke Navigator/Case Manager – a specific role of a health care professional to provide person centred support to stroke survivors and their families, ensuring they receive the information, education, support and advice they need to successfully transition across the stroke care continuum and settings of care. The stroke navigator/case manager is often a social worker or similarly trained professional, and is often engaged in the acute care phase, and continues on in many regions for the first six months following stroke, depending on patient and family needs. A key role for the stroke navigator/case manager is to provide emotional support to stroke patients, families and informal caregivers, and assist with the practical aspects of adaptation following stroke (Stroke Foundation, United Kingdom).
    The stroke navigator/case manager works closely with other health, social care, voluntary and community providers to ensure a seamless delivery of service. This is accomplished by providing information on available services, processing referrals, linking with primary care providers and other medical specialists required by the patient, and assisting patients and families to address and access financial, transportation, and other concerns that may negatively impact achieving optimal recovery and successful transitions. They should also facilitate contact with stroke support organizations and local peer support groups for patients and families following stroke.
  • Community – within the context of the Canadian Best Practice Recommendations for Stroke Care, ‘community’ is defined from a multidimensional perspective: as the physical, social, and care environment where individuals reside after experiencing a stroke. Community as an environment would include any setting that is outside the acute care and inpatient rehabilitation settings, where a person would reside and resume life roles and activities following a stroke. Therefore, community as an environment would include family home, assisted living, long-term care, and other residential settings where a person may live once a person is discharged from acute and sub-acute care.
  • Community Reintegration – A return to participation in desired and meaningful activities of daily living, community interests and life roles following a stroke event.  The term encompasses the return to mainstream family and active community living and continuing to contribute to one’s social groups and family life.  Community reintegration is a component in the continuum of care post stroke; rehabilitation helps clients identify meaningful goals for community reintegration and through structured interventions facilitates resumption of these activities to the best of their abilities. The stroke survivor, family, friends, stroke recovery associations, rehabilitation programs and the community at large are all integral to successful community reintegration.
    Successful community reintegration may require health services and community-support services that aim to optimize patient and family functioning and maximize quality of life after return to the community. To achieve these goals, the following are examples of services that may be required for stroke patients, their families and informal caregivers: social support, monitoring of caregiver burden and depression and family interactions, family education interventions, adaptation of social and leisure activities post stroke, leisure therapy, and encouragement to actively participate in all aspects of society.
  • Home Health Care – also referred to as ‘home-care’, is defined in these recommendations as rendering medical, nursing, rehabilitation and personal care related services to clients in a home setting rather than in a medical facility. These services would be provided to patients who return to their homes following a stroke or TIA. The home care services help patients to safely increase their ability to tend to their everyday needs at home, continue their rehabilitation therapy, promote ongoing recovery, identify risks, facilitate home-modifications, and provide assistance for personal care and mobility, and gain independence to enable patients to remain safely in their home for as long as possible.
    Home health care may include skilled nursing, and social work services, in addition to speech-language pathology, occupational therapy, physiotherapy, home care attendants and/or home support workers.  Home-based care may be provided exclusively in the home or combined with care in the community (such as in day centres or under arrangements made for respite care). In parts of Canada, some home care services, such as rehabilitation services, are also available for residents in assisted living and long-term care settings.
    Home health care may include skilled nursing services and social workers, in addition to speech-language pathologists, occupational and physical therapy, and personal care workers. In many cases, it includes assistance with cooking and other household chores, and assistance with financial management. A key element of home-care services is to develop strong links between the client, their family and informal caregivers with their primary care providers to ensure smooth transitions of services, and monitoring of ongoing medical and rehabilitation needs, medication compliance and management, access to disability services, vocational assistance, and informal caregiver support and burden.
  • Supported Living Environments – refers to residential living locations where individuals may transition following acute and sub-acute care for a stroke, and where they continue to receive healthcare services within a coordinated and organized system. The levels of support and service received are dependent on the individual’s physical, functional and cognitive abilities and ongoing health care needs, as well as available social support from family members and informal caregivers. Supported living environments are settings where people can maintain as much control over their lives as possible, while receiving the supports they need to maintain their activities of daily living.
    The principles of supportive living are to maximize independence of the resident, provide respect for individuality, maximize control of their environment, maximize resident decision-making, maximize privacy, and provide flexibility of the environment to accommodate changing needs and declines in health status and independent functioning (Alberta Health Services).
    Supportive living environments may include a range of settings and support service levels, such as: private home or residence where health care services are brought to the stroke survivor; group settings such as lodges, transitional care or respite centres where the person with stroke resides with others with similar care and support needs; assisted living settings where the individual has their own private rooms within a residential setting and have access to personal care support, group meals, organized social activities, and transportation; advanced assisted living and full care environments such as nursing home settings.
  • Long-Term Care – Long-term care is the provision of formal organized institutional care for three or more unrelated people in the same place. Long term care is provided for people of all ages who have long-term health problems and need assistance with the activities of daily living (ADL) in order to enjoy a reasonable quality of life (World Health Organization, 2000). The goal of long-term care is to ensure that an individual who is not fully capable of long-term self-care can maintain the best possible quality of life, with the greatest possible degree of independence, autonomy, participation, personal fulfillment, and human dignity .
    The need for long-term care following a stroke is influenced by changing physical, mental, and/or cognitive functional capacities, their abilities and levels of independence prior to the stroke, and the availability of family and informal caregivers. Many people may regain lost functional capacities over a shorter or longer period of time following stroke, while others decline. The type of care needed and the duration of such care are thus often difficult to predict (WHO).
    Each long term care home provides an organized 24 hour program of nursing, personal support, medical, pharmacy and interdisciplinary care services based on the assessed needs of residents and guided by an individual written plan of care. Appropriate long-term care includes respect for each individual’s values, preferences, and needs. In many provinces in Canada, each long term care home is considered to be primarily the home of its residents. It is to be operated to promote and maximize independence of each resident as well as to provide dignity and security, safety and comfort and to meet the physical, psychological, social, spiritual and cultural needs of its resident population. Admission to a long term care home is based on provincial health insurance eligibility and an independent assessment by a case manager or community-care service provider (Ontario Long Term Care Association).

Canadian Stroke Best Practices Framework for Optimal Stroke Services Delivery

There are variations in the levels of stroke care service provided within the Canadian health care system. These services can be arranged along a continuum from minimal, non-specialized services, provided in facilities that offer general medical and surgical care, to more advanced and comprehensive stroke care centres (See Figure 6.3). The goal for each organization involved in the delivery of stroke care services is to continue to develop the expertise and processes needed to provide optimal patient care, taking into consideration that organization’s geographic location, patient population, structural resources, and relationship to other centres within their healthcare region or system. Once a level of stroke services has been achieved, the organization should strive to develop and incorporate components of the next higher level for ongoing growth of stroke services where appropriate, as well as continuous quality improvement within the level of service currently provided.

Figure 6.3: Canadian Stroke Best Practices Framework for Optimal Stroke Services Delivery

Figure 1 - Canadian Stroke Best Practices Framework for Optimal Stroke Services Delivery

For additional information and details about the Stroke Services Framework, please refer to the “Taking Action Towards Optimal Stroke Care” Resource.

Development of the Canadian Best Practice Recommendations for Stroke Care

For detailed methodology on the development and dissemination of the Canadian Best Practice Recommendations for Stroke Care please refer to the stroke best practices website at http://www.strokebestpractices.ca/index.php/overview/methods/.

Acknowledgements

The Canadian Stroke Best Practices Team, Heart and Stroke Foundation and the Canadian Stroke Network gratefully acknowledge and thank all those who participated in the development, writing, and review of these recommendations, including:

  • the writing group leaders and members who have been very dedicated to this effort and shared their time and expertise;
  • the external reviewers, all of who have volunteered to review and provide feedback on this update;
  • The Canadian Stroke Quality and Performance Advisory Group for their work in updating and confirming the performance measures that accompany each recommendation;
  • Norine Foley and Katherine Salter from workHorse for their extensive work on the evidence reviews, development of evidence tables and work on implementation tools;
  • We are grateful to Dr. Teasell, Marina Richardson and Laura Allen for their work on the systematic reviews of the literature and evidence tables;
  • Adhawk for their work on updating the Stroke Best Practices website.

Funding

The development of these Canadian stroke care guidelines is funded in its entirety by the Canadian Stroke Network, which is in turn funded by the Networks of Centres of Excellence program. No funds for the development of these guidelines come from commercial interests, including pharmaceutical companies. All members of the recommendation writing groups and external reviewers are volunteers and do not receive any remuneration for participation in guideline development, updates and reviews.

Citing the Stroke Transitions of Care Update 2013

Lindsay MP and Gilmore P, on behalf of the Stroke Transitions of Care Writing Group. Chapter 6: Managing Stroke Transitions of Care.

In Lindsay MP, Gubitz G, Smith E, Bayley M, and Phillips S (Editors) on behalf of the Canadian Stroke Best Practices and Standards Advisory Committee. Canadian Best Practice Recommendations for Stroke Care: 2013; Ottawa, Ontario Canada: Heart and Stroke Foundation of Canada and the Canadian Stroke Network.

Comments

We invite comments, suggestions, and inquiries on the development and application of the Canadian Best Practice Recommendations for Stroke Care and ongoing updates.

Please forward comments to the Heart and Stroke Foundation Stroke Best Practices and Performance team at bestpractices@hsf.ca