Innovative Collaborations between Family Caregivers

and Health Care Providers

Summary of The Change Foundations

Literature Review and Environmental Scan Project

August 2016

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A. Introduction:
The Change Foundations strategic goal is to improve the experience of family caregivers as they help
their family member transition through and interact with Ontarios health care systems (Out of the
Shadow and Into the Circle). We sponsored a narrative review and environmental scan to identify
initiatives where family caregivers and health care providers collaborate or partner in hospital, home
and community care or primary care settings.

This paper is a summary of key findings from the review. The full report - including the search strategy,
selection criteria, evidence base for collaborations between providers and family caregivers, and
references - can be accessed on our Caregiver Resource Hub. Descriptions of the collaborative
initiatives are provided as well as links to additional information where available.

In general, the review revealed the following:

Caregiver support comes in many forms and is delivered in a multitude of ways in health care
settings. Collaborative initiatives between caregivers and providers ranged from quick interventions
(e.g., referrals to support organizations), to respite programs, to more sustained involvement
through supported self-directed funding models that include caregiver needs assessment.

Initiatives in home and community care settings tend to be targeted towards caregivers who are
already experiencing high levels of distress, and who are obvious candidates for immediate support.
There are increasing calls to support caregivers earlier in their journey to prevent social isolation and
burnout.

Initiatives for training and preparing family caregivers in health care settings are prominent in the US
and UK but almost non-existent in Canada, with the exception of training offered by caregiver
support organizations (that are sometimes funded by a health care budget).

There are a number of implementation considerations that characterize successful approaches

regardless of health care setting:
o review of current practices and assumptions about family caregiving to reveal false assumptions
about processes and practices within and across settings;
o pursuit of multi-pronged approaches to better identify caregivers and to meet caregivers where
they are physically present;
o co-creation between health care providers and family caregivers to develop caregiver support
initiatives; and
o partnerships amongst multiple organizations to meet the needs of caregivers, including pooling
of resources, shared referral mechanisms, and working together for collective impact.

B. Description of Initiatives:

The review and environmental scan identified collaborative partnerships between family caregivers and
providers in three sectors of the health care system: (i) hospital settings; (ii) home and community care
settings; and (iii) primary care settings. The following is a brief description of those initiatives.

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1. Hospital Based Collaborations

A range of hospital based initiatives were identified: (i) family presence policies; (ii) patient and family
advisory councils (PFACs); (iii) family meetings and family centered rounds; (iv) family resource centres;
(v) carer passports; 1 and (vi) training and education initiatives aimed at preparing caregivers.

1.1 Family Presence Policies

Initiatives such as Better Together in the U.S. and now in Canada, and the U.K.s Johns campaign create
awareness about the importance of caregivers as partners in care and as the main source of support for
hospitalized patients. These are hospital wide initiatives to adopt family presence policies. In the Better
Together initiative, led by the Canadian Foundation for Healthcare Improvement (CFHI), patients are
able to designate a family member or other loved one to be at their side 24 hours a day, seven days a
week. CFHI has developed resources for interested hospitals (see: Better Together - Fact Sheet).

1.2 Patient and Family Advisory Councils (PFACs)

Beyond presence, the importance of active engagement of family caregivers in the planning and delivery
of care within hospitals was identified as a collaborative initiative between patients and family
caregivers, and providers in the hospital setting. Patient and family advisory councils (PFACs) are an
example of this type of engagement. See The Change Foundations PFAC Report and Cancer Care
Ontarios PFAC Toolkit.

1.3 Family meetings and Family Centred Rounds

Family meetings serve as a forum for communication, information sharing and shared decision making
amongst clinicians, patients and family members. Including family caregiver in the meeting suggests a
level of collaboration between the caregiver and health care providers. These meetings or family
conferences are more common in end of life care, intensive or critical care units, cancer care and
paediatric care.

Family-centred rounds are interdisciplinary bedside teaching rounds with active family participation.
There is an existing body of literature and evidence base surrounding the use of family-centred rounds
in paediatric hospitals. One study concluded that over half of paediatric hospitalists in the U.S. and
Canada conduct family centred rounds.2 Outcomes include improved family experience through clarity
of the care plan and overall satisfaction with care. There is much to learn about the use of family
meetings and family rounds as a tool for facilitating partnerships and improving patient and family
centred care in a more general population of caregivers.

1
Carer is the term used in the U.K., throughout Europe Australia and New Zealand to refer to family caregivers.
The term was adopted by the Canadian Caregiver Coalition in February 2016 when it became Carers Canada.
2
Mittal V. et al., 2010. Family-centered rounds on pediatric wards: a PRIS network survey of U.S. and Canadian
hospitalists. Pediatrics. 126: 37-43.

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1.4 Family Resource Centres

Family Resource Centres (FRCs) provide a physical space within hospitals dedicated to the informational
and sometimes emotional needs of caregivers. See Appendix 1 for a description of selected family
resource centres in Ontario and other jurisdictions. The Institute for Patient and Family Centered Care
(IPFCC) reports that most FRCs begin in the form of a health library offering information about
community resources and services, and then expand to include peer support, education and counselling
programs, meeting space where families can relax or connect with health care providers and volunteers,
and amenities for families (e.g., refreshments, showers, laundry facilities, relaxation services). Many
FRCs are in childrens hospitals and usually contain a space where families learn about and access
information related to their caring role and community resources. FRCs typically include health care staff
who work with families, and often include family members who volunteer to assist other families in
navigating the system or providing encouragement and emotional support.

One of the most comprehensive FRC found through the review was the Ken Hamilton Caregiver
Resource Center which has been replicated in 11 other hospitals across the U.S. It stood out for several
reasons: it is open to all caregivers in the community, not just those in the hospital; it provides a range
of resources and supports including informational resources and caregiver coaches (often former
caregivers); and it specifically serves caregivers a statement of recognition and validation for family
caregivers in the hospital and broader community. Ontario has a number of impressive resource centres
- Grocery Foundation Resource Centre at Holland Bloorview Kids Rehabilitation Hospital and the Family
Resource Centre Ontario Shores - that provide a range of services including patient and family libraries,
counselling and support for families, help to navigate the health care system, and connections to other
services available in the community.

1.5 Carer Passports

Carer Passports, an initiative based in the U.K., provide a mechanism for an explicit approach to partner
with carers/caregivers in a hospital setting. A recent Carers U.K. report identified over 30 hospitals3 that
have some form of a carers passport initiative to acknowledge caregivers. The Carer Passport
components vary across hospitals but are intended to increase the identification, recognition and
support of carers in the hospital, and can be in the form of an easily recognized card, badge or booklet
issued by hospital staff to carers (see Appendix 2 for examples). Components generally include:
carer conversations at hospital admission about desired levels of involvement, carer rights to be
included in team meetings and care plan discussions, explanations of medications and treatments
and training post discharge for complex care;
discounts on parking, hospital shuttle bus services, local services and products;
carer champions within the health care setting to be a point person for carers but also to educate
staff about caregivers; and
special consideration within the physical space of the hospital (e.g., flexible or extended visiting
hours, access to washing facilities).

Carers UK contend that Carer Passports provide a simple way of standardizing approaches to carers
within hospital settings and improving the level of support for caregivers. They emphasize that whatever
form the Carer Passport program takes, it is essential that it is not a a tick-box exercise but is part of a
wider cultural shift towards valuing and recognizing the importance of carers to patients. They view
3
National Health Service (NHS) hospital trusts, also known as acute trusts.

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the initiative as a mechanism to promote a Carer Friendly NHS and suggest that the Carer Passport could
also be more broadly applied within the NHS and in other settings.

1.6 Preparation for caregiving

A number of hospital based initiatives were identified that focused on identifying caregivers during
hospital stays, and preparing and supporting them prior to or immediately following discharge from the
hospital. These transitional care interventions during the transition from acute care settings to home
were viewed as a particularly appropriate time to engage with family as they enter the role of
caregiver and take on new responsibilities.4 Three initiatives are described (also see Appendix 3):

Transitions in Care Quality Improvement Collaborative (TC-QuIC) is a multi-organization

collaborative led by the Families and Health Care Project at Next Steps in Care at the United Hospital
Fund in the U.S. The goal is to improve hospital-initiated care transitions by including family
caregivers in decision making and providing information, preparation and training for them. During
the course of a three-year project, 45 health care organizations participated in one or both of two
rounds where the following strategies were used and adapted to the local context using a Plan-Do-
Study-Act process:
o inclusion of the family caregiver in medication reconciliation and management;
o identification of post-discharge patient needs and discussion of options with the caregiver;
o discharge preparedness, including training, and discussion of expectations;
o a well-orchestrated day of discharge;
o post-discharge communication with the caregiver and the receiving agency; and
o advance care planning.
The tools developed as part of the TC-QuIC are available online (Next Step in Care). The initiative
differs from other care transition programs because it does not require an organizational
infrastructure or a specially hired professional; rather family caregivers and health care providers
can access the tools on their own as needed or to supplement existing models of care.

Enhanced Care Transitions Intervention is an enhanced version of the evidence-based Care

Transitions Intervention (CTI) developed by Dr. Eric Coleman, a leader in patient and family-centered
care and advocate for the preparation of patients and family caregivers. The internationally known
CTI emphasizes the experience of family caregivers and their desired need for preparation and
training in transition from a hospital setting to home. The team developed the Family Caregiver
Activation in Transitions (FCAT) measure5 and the Enhanced Care Transition Intervention which
includes a component specifically dedicated to caregiver preparation. The ECTI is a 4-week
intervention where transition coaches engage the family caregiver in practice and role-playing of
anticipated encounters. The team identified the importance of caregiver presence for patient

4
The review also referenced the Patient Oriented Discharge Summary (PODS) tool recently developed through
engagement with patients, caregivers and care providers. It is being used in eight hospitals in Toronto and focuses
on five key pieces of information that patients need to know to manage their health once they leave hospital.
While the directions for using the tool stipulate that caregivers must be present when discharge instructions are
reviewed, it is unclear if and how caregivers are specifically prepared to carry out care at home post discharge. A
clinical trial was recently registered, however no caregiver outcome measures or experience measures were noted.
5
See the Family Caregiver Assessment in Health Care Settings: Summary of The Change Foundations Literature
Review and Environmental Scan for a description of the FCAT measure.

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 completion of a care transition intervention reporting that patients with caregivers were more than
five times likely to complete their care transition intervention as patients without caregivers.6

Family-Centered Function Focused Care This initiative was designed to promote functional
recovery in hospitalized older adults through recognition of family caregivers as an invaluable
resource, and engagement and preparation of caregivers prior to patient discharge. A family-
centered resource nurse, typically a registered nurse, committed 10 hours a week to implement
components of the intervention, including education and training for staff and family caregivers.
Staff training included communication training, and training in techniques to include the patient and
family at shift change reports and to involve family caregivers in care. Results included a
demonstrated positive influence of education and engagement on family caregivers preparedness
for caregiving using the Family Caregiver Preparedness Inventory tool.7 Information about the
initiative can be accessed through Dr. Marie Boltz.

2. Home and Community Care Based Collaborations

Home care organizations in Canada tend to offer a range of caregiver resources and support, with on-
line access including: support groups (e.g., VON Caregiver Support Circles); and online portals or
resources with specific information about education, training and support for caregivers or care
providers (e.g., Home Instead Caregiver Stress, Saint Elizabeth Health Care Caring for Caregivers
Resource Centre). The review profiled a number of innovative respite and training initiatives for family
caregivers in the home and community care setting.

Respite initiatives for Family Caregivers:

Many programs in home and community care settings contain some element of respite for family
caregivers. There are many not-for-profit organizations that provide respite programs and options for
family caregivers looking after people with specific conditions (e.g., Alzheimer Societies), as well as
private organizations that offer a variety of respite options for a fee to family caregivers. The review
identified a number of self-directed funding initiatives that include respite as one component. These
initiatives are based on the philosophy that clients and families know best about the duration, frequency
and type of respite needed. 8 Family caregivers are typically screened for eligibility to identify those who
are at high risk of burning out or placing loved ones into long-term care.

The Caregiver ReCharge service is a collaborative community service offered by the Alzheimer
Society of Peel, Nucleus Independent Living and Links2Care, with funding support from the

6
Epstein-Lubow, G., Coleman, E. A., et. al. (2014). Caregiver presence and patient completion of a transitional care
intervention. American Journal of Managed Care, 20(10), 349444.
7
See the Family Caregiver Assessment in Health Care Settings: Summary of The Change Foundations Literature
Review and Environmental Scan for a description of the Family Caregiver Preparedness Inventory (FCPI) tool.
8
There are also two well-known programs that provide self-directed funding options aimed at clients rather than
caregivers - Choice in Supports for Independent Living in B.C. and Seniors Managing Independent Living Easily
(SMILE) in Ontario.

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 Mississauga Halton Local Health Integration Network (LHIN).9 The target population is high needs
individuals and their caregivers. The caregiver determines when they use their allotted hours and
for what purpose, ensuring responsiveness to the caregiver's needs. A respite coordinator conducts
an assessment of the caregiver; a central registry determines eligibility; referrals are sent to the
most appropriate service provider who works with the caregiver to develop a customized service
plan. An evaluation of the initiative was completed in June 2015 with plans for published reports of
the results of the evaluation.

The Family Directed Respite Funding program program is one of a number of respite services that
Wesway offers to families living in the Districts of Thunder Bay, Kenora and Rainy River. Families
caring for children, adults and seniors with a disability or chronic health condition receive self-
directed funding which allows them to arrange respite care in the way that best fits their family.
Families can be creative with these funds as long as the outcome of their plans results in respite.
Caregivers hire respite providers of their own choosing and their service can be as portable as they
like from home, to community to out of town for medical appointments if that suits the needs of
their family. Wesway provides caregivers with a range of resources for service planning including an
on-line tool which matches families with available respite service providers.

Caregiver for Older Persons Framework and Caregiver for Children with Medical Complexity
Framework: These initiatives were implemented by the Toronto Community Care Access Centre
(CCAC) in two separate settings and both programs are clearly partnership models of care. Family
caregivers were asked what would help them as a caregiver, and were identified specifically as a
client with funding attached to their own needs and program staff support to meet those needs.
For example, if a caregiver chose medical or home modification equipment as their form of support,
they could arrange for this themselves or seek support from staff to find the right equipment.
Trained care coordinators provided intensive case management and on-going counselling, and co-
created flexible packages of supports. While funding for the caregiver was found to be important,
program evaluations concluded that support from staff was also critical. While classical self-directed
care models may work for individuals capable of managing their own care (as in the disability
community), supported self-directed models work better for individuals who may face challenges
managing without help, including those who are already at the point of burnout, face complex
medical and social needs, and have limited access to needed formal services and supports (e.g.,
literacy, poverty, social marginalization). Also of note, while both projects recognized caregivers as
clients in their own right, the "unit of care" in both cases was the cared-for person and caregiver (or
even the cared-for person, informal caregiver and formal care manager). This recognizes that
problems and solutions are highly interlinked, and that the informal/informal interface is highly
permeable. Both of these projects demonstrated successful proof-of-concept with the potential for
spread and adaptation. See Appendix 4 for more information on these projects.

Training initiatives for Family Caregivers:

Training of family caregivers was a key component of a number of identified collaborations in home and
community care settings.

9
The ReCharge Program consists of five services: In-home ReCharge, Emergency Respite/Short-Stay Respite, Long-
Stay Respite, Adult Day Services, Education/Caregiver Knowledge and Support. The Caregiver ReCharge service is
part of the In-home ReCharge service.

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 Living Life to the Full for Caregivers 55+ Living Life to the Full is one of the programs in the ENRICHES
collective.10 Living Life to the Full consists of an 8-week course to provide caregivers with skills and
knowledge to cope with lifes challenges. The course is based on cognitive behaviour therapy, an
evidence-based practice. The project is led by the Canadian Mental Health Association (CMHA) who
have partnered with community health centres (CHCs) to deliver the program widely across
Toronto. Fifteen trained Living Life to the Full facilitators from eight CHCs, WoodGreen Community
Services and CMHA Toronto offer courses in CHCs, older adult centres, Toronto Community Housing
sites and community agencies. Living Life to the Full is collaborating with community organizations
to translate and pilot the course in French and two other languages, to improve access to the
program. The program will continue until October 2018. An evaluation of a pilot initiative with
older adults showed positive results with participants reporting improved overall well-being, greater
social support and new problem-solving and coping skills (Living Life to the Evaluation Report, 2015).

Alberta Caregiver College (ACC) Powerful Tools for Family Caregivers is a training initiative
situated within Alberta Health Services and delivered by a staff member from the Glenrose
Rehabilitation Hospital. The ACC is a virtual college providing online courses to enhance the
knowledge and skills of caregivers caring for a family member. There are four core modules: (i) the
caregiving journey; (ii) perspectives on health and disability; (iii) coping strategies and stress; and (iv)
resources and support. The course offers six optional modules. Evaluation results revealed that the
initiative helped to reduce caregiver burden related to providing care at home (70%); enhanced
access to respite for caregivers (60%); and increased caregiver ability to cope with stress related to
being a caregiver (100%). However, these results are based on a small sample (i.e., 10 health care
professionals and 10 family caregivers). Caregiver awareness of the initiative has been identified as
a challenge. . Information about the ACC can be accessed by contacting the Glenrose Rehabilitation
Learning and Development Centre (grhlearninganddevelopmentcentre@albertahealthservices.ca).

3. Primary Care Based Collaborations

A limited number of primary care based collaborations which focus on the identification, referral and
health of carers were reviewed. The profiled initiatives are from the U.K. where there has been some
experience with and evolution of a focus on carers in primary care settings.

Royal College of General Practitioners (RCGP) Supporting Carers in General Practice Programme:
This programme was a 5-year project (until March 2015) aimed at increasing the identification of
carers and support for carers in GP practices in England. The goal was to get GPs to think more
about carers given that they are well positioned to identify them (i.e., carers are far more likely to
have an interaction with a health care provider than with a social care provider given that social care
is means tested). In collaboration with NHS England and NHS Improving Quality, the Commissioning
for Carers Principles were developed and became part of NHS Englands Commitment to Carers
(May 2014). Numerous resources were developed to help GPs and primary care staff support
caregivers (e.g., Supporting Carers Action Guide, eLearning Programme, training DVD, educational
framework and learning resource for GPs and primary care teams accessible on the project

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ENRICHES Engagement to Reduce Isolation of Caregivers at Home and Enhancing Seniors - is a Toronto
collective funded by a federal New Horizons for Seniors Program grant with a goal to reduce social isolation in
caregivers aged 55 and over. (See: enriches.ca.)
.

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 website). A key component of the initiative was the GP Champions for Carers which consisted of a
team of GP carer champions who worked in their local areas to raise awareness about carers.
Another key component was the Caring for Carers Hub, an online platform with generic national
information about carer support that allowed for the addition of local information (7 sites are still
live). These resources will be of interest to organizations attempting to improve caregiver
identification and support within primary care. See Appendix 5 for more detail and key learnings.

Surrey NHS Carers Prescription - One of the most extensive and successful initiatives within a
primary care setting, Carers Prescription is a wide ranging, well researched and rapidly growing
program. The initiative emerged from survey results which highlighted the need for carer breaks.
The Surrey Carer Prescription initiative expanded from GP offices to include a presence in hospitals
and community pharmacy. The Carer Prescription can be used by a GP to prescribe a break for
carers (up to 500), or prescribe a referral to a range of support services (e.g., carers assessment
with social care services, Surrey Young Carers). With the evolution and maturity of the program, the
process of giving a prescription can now be done electronically and has been extended to other
health care providers who can refer carers to available supports (with the exception of carer breaks
which are prescribed by GPs). Over 10,000 Carers Prescriptions have been made, resulting in over
450 carer assessments and almost 15,000 service requests. Key informants advised that getting
GPs on board to engage with carers was not a barrier as they were keen to support carers; they just
needed information, resources and mechanisms in place to ensure an easy to use referral process.

Carers Express is an education program aimed at health care providers to raise awareness about
carers and improve the signposting of carers to the right services. Launched in Salford U.K. in 2009,
the goal is to get GP practices to proactively identify carers, support them and connect them to their
local carers centre. The initiative is positioned as fast track carer awareness training for time-poor
GP practices. The initiative is solutions-focused and demonstrates that supporting carers takes
very little time but can deliver huge benefits to carers and the people they care for.

Surrey Healios has been hired by the local Clinical Commissioning Group (CCG) to deliver online
training for carers of people with mental health conditions. The purpose of the training is to
enhance carers quality of life and provide them with skills through digital delivery of a skills based
intervention. The training includes twelve 40 minute, clinician-led online support sessions for
carers. The sessions focus on communication, developing new skills, noticing change, knowing what
to do and when and building stronger relationships. Mid-stage evaluation results are promising with
reduced overall distress, carer burden, and improvements in carer work and social functioning.

C. Concluding Comments:

There is great potential for further action and impact to better support family caregivers in Ontario.
Existing initiatives within Ontario could be either scaled up, implemented in a different setting or with a
new population of underserved caregivers. Moreover, the U.K. has developed a multitude of solutions
(e.g., Carer Prescriptions, Carer Passports) that could potentially be adapted to an Ontario health care
context, particularly in raising awareness about family caregivers and increasing identification of
caregivers in health care settings.

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Appendix 1: Examples of Family Resource Centres
Name of Centre Description
Ontario
Grocery Foundation The Grocery Foundation Resource Centre, in the main lobby of the hospital, hosts the Family Resource Centre and Health Sciences
Resource Centre at Library. Parents, families and patients can learn about programs, services, community resources; educational videos, workshops,
Holland Bloorview Kids library searching service, and medical texts are also available. Staff are present and available to help families. A warmline
Rehabilitation Hospital offering information about programs, services and resources about childhood disability is available from 10 am to 12pm from
Monday to Friday.

Family Centre at Toronto This centre includes a childrens library, a health information library, a Family Resource program and Family Literacy talks. It is
Sick Kids staffed by social service work students and volunteers who support families to fill out forms and applications.

Paediatric Family This Pediatric Family Resource Center contains an extensive collection of resources such as parent guides about health and illness,
Resource Center - DVDs and referrals to other info services; The centre also contains an office centre with internet, photocopying, and a telephone
London Health Sciences for local calling.

Bridgepoint Patient and This resource centre is a library with fiction and non-fiction books, resources on a variety of health topics such as complex chronic
Family Resource Centre illnesses, a librarian, computers and a book cart service for delivery to patients who cannot make it to the library.

Family Resource Centre The FRC is a therapeutic space for families offering family-to-family support groups, family assessments and education sessions,
Ontario Shores and opportunities to connect with other families. There is a kitchenette, childrens play area, computer terminals and a meeting
room. There is a FRC Coordinator and volunteers who can answer question and offer support.

Other Provinces
Family and Community A multitude of services are offered through the FCRC aimed at supporting families including a community education service,
Resource Centre (FCRC) childcare, family to family connections, family support specialists and an office centre. Family Support specialists help families to
at Alberta Children's connect with services in the hospital and community.
Hospital
Montreal Children's The room not only has several hundred books on its shelves but there are board games, activities, a comfortable sitting area, and
Hospital Family Resource two computer workstations for patients and their families. The Family Resource Centre, a bright, modern space located in Room A
Library RC-1107, is an area at the Glen site that was greatly expanded and updated to be an attractive and welcoming place for parents
and patients alike.
Two professional librarians are available for consultation during opening hours.

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U.S.
Ken Hamilton Caregivers KHCC is an award-winning support program dedicated to caring for family caregivers. A former caregiver from the
Center (KHCC), Northern community raised $500,000 initially to build the center and went on to raise nearly $2 million to create an endowment. The
Westchester Hospital, program is 100% funded through philanthropy. Focus groups with caregivers and staff helped to design a space within the hospital
New York to rest and recharge. The center is staffed by a full-time social worker, a part-time replication coordinator and 34 volunteer
caregiver coaches (who are often former caregivers); most recently, a part-time social worker has been added. The program
provides counseling, coaching and assistance with hospital system navigation and community resources. Caregiver coaches round
on the floors to introduce the program and provide services. Additionally, caregivers are encouraged to visit the center which is
located in the main lobby of the hospital and is available to caregivers 24 hours a day, 7 days a week. There are monthly support
groups, a resource library, massage chair, computer and Internet access, telephones and a fax machine and a kitchenette with
healthy snacks. All services are offered free of charge. Since 2006, KHCC has grown to over 52,000 caregiver interactions
(approximately 6,300 annually). Eleven U.S. hospitals have implemented similar programs. A new initiative to the program is the
Stay in Touch program, reaching out to caregivers post discharge when their needs may have changed. Ongoing communication
is intended to reduce stress, isolation and prevent burnout. Another outgrowth of the program has been to support the
professional caregivers both in their role as hospital staff and in their personal roles as family caregivers.

Seattle Children's The FRC supports and educates families. There are chair massages for parents and caregivers; kitchen with coffee and tea, showers
Hospital Family Resource and a laundry room; office centre; and help to plan a stay at the hospital. The Family Room is open 24 hours.
Center

Anne Byron Waud Staff is available 8:30 to 4:30 - Monday through Friday. A full-time director and an assistant staff the center. A volunteer caregiver
Patient and Family works in the center for 15 hours. Computer instruction is one service provided.
Resource Center for
Healthy Aging in Chicago
at Rush University
Medical Center

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Appendix 2: Carer Passport and Champion Examples (from Carers UK 2016 Report Carer Passport)

Name and Source Description

Pinderfield All carers to patients in Pinderfield Hospital, an acute care hospital in Yorkshire, are potential participants. The
Hospital - Mid implementation of a Carer Passport was funded from a dementia support resource fund. The passport includes a 30%
Yorkshire discount off drinks and beverages, discounted parking; visitation outside of visiting hours permitted; active involvement in
discharge discussions; a special password that allows nurses to share information about the patient over the phone. The
hospitals NHS
hospital also built six family support suites for families to spend the night. Passports were given out to over 900 carers.
Trust Reported results included freeing up nurse time; carers feeling more valued as part of the team and as experts; and
reassurance for carers and families.
Carers Support Identified carers are referred to the Hospital Liaison worker. Liaison workers are employed through local carers support
Centre: North centres and support carers to ensure they are involved and supported through the discharge of the patient. There are also
Bristol and GP Liaison workers present in GP practices in this trust. Carers are given a badge for open visiting in the hospital and a
swipe card to access the staff cafeteria and are also provided with parking concessions. Carers dont have a specific
University
passport but are working on a logo that would go on a patients chart that would identify that a carer is involved. A social
Hospitals Bristol return on investment study concluded that the value of these approaches is a savings of 3.6 million a year, including
Trusts 239,000 in health services costs avoided. Gains totalling 1.9 million for the state were recorded.

Lister Hospital Lister Hospital in Hertfordshire is a designated Carer Friendly Hospital with a Carers Policy and Contract, a Carers
Hertfordshire Welcome Pack, Carers Noticeboards, concessions on parking, vouchers to purchase food at the same price as staff, a carers
lead who is employed by the Trust (not the local carers service, which is more common) and open visiting across the
hospital. An evaluation is underway with early reports of 150 carer support leaflets taken each week and over 100 referrals
made to local carer organizations.

Through funding received in 2013/2014 to set up a Carer Friendly Hospital project, the hospital developed a Carers'
Welcome Pack, Carers' Noticeboards and carer specific information was put on the website. Their Carer Passport initiative
includes concessions on parking and food vouchers. Open visiting is a policy across the hospital. Within a 7-month period
the Carers' Lead made contact with 196 carers and made 100 referrals to a local carer organization and 150 leaflets are
taken from Carers Corner each week. Readmission and length of stay are being evaluated currently. There are plans for a
Carer's Cabin to create space for carers to have a break and connect with each other.

Over 5,000 Carers Passports have been issued since May 2013; 45% are new carers to the local caregiver support center.

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Appendix 3: Preparation for Caregiving in Hospital
Name and Source Description

Next Steps in Care Objective: To change practice with the goal of ensuring that family caregivers are 'routinely involved in planning, decision making, and coordinating
and Transitions in care, particularly around transitions in care settings". TC-QuIC was an extensive 3 year (2010-2012) multi-provider initiative to improve care transitions
Care - Quality by including family caregivers in decision making and providing information, preparation and training for family caregivers.
Improvement Participants & Setting: Over 2200 caregiver were identified and over 200 staff members were involved. 45 multidisciplinary teams from hospitals,
Collaborative nursing homes, rehabilitation programs, home care agencies and hospices in New York, U.S.
(TC-QuIC) Methods/Intervention: The collaborative consisted of 45 organizations seeking to move providers beyond focusing on patients to consider the
strengths and needs of family caregivers during transitions. The Next Step in Care Guides and checklists served as a Change Package for
implementation into routine care. Health care organizations tested and adapted ways to involve family caregivers in care transitions based on their
local contexts but a foundation for all activities was the early identification of family caregivers and self-assessment of needs for training and support.
The collaborative was supported through webinars (33), call in sessions (6), regular coaching calls with team site members, site visits (19), and all day
learning sessions (4) in each round. Health care providers worked with family caregivers to identify their own assessment of their needs.
Outcomes/Outputs: Over 2200 caregivers were identified: 897 had needs assessments; 634 were included in medication reconciliation; 335 were given
education and training prior to discharge and family caregiver satisfaction post discharge was 9.5 on a scale of 0 to 10. Health care providers reported
increased confidence in identifying, educating and working with family caregivers and increased awareness of caregiver roles during care transitions.
Implementation findings included: (i) mapping current processes, including the experience of both family caregivers and staff, to reveal false
assumptions is critical (e.g., prior to the study, 83% of staff across all organizations reported that they always or usually assessed family caregiver
needs, yet only 35% of family caregivers reported having their needs assessed); (ii) develop systematic ways of identifying caregivers are needed as
organizations realized they often misidentify or fail to identify the caregiver; and (iii) there are major barriers to implementing caregiver assessments
and thus the purpose of the assessment (i.e., to provide an opportunity for caregivers to identify their own caregiving needs) needs to be clearly stated.
Implications/Next Steps: The website contains 25 field-tested guides and checklists in 4 languages including topics such as medication management,
assessing one's needs as a caregiver, planning for discharge, privacy laws and end of life care.
Enhanced Care Objective: The ECTI is an enhanced version of the evidence-based Care Transitions Intervention used widely in the U.S. It is a 4-week intervention
Transitions where transition coaches engage the family caregiver in practice, simulation and role-playing upcoming encounters.
Intervention Participants & Setting: Patient-family caregiver partnerships (83); patients were 65 and older admitted to acute care settings.
Outcomes: see Coleman, E. A., et al., (2015). Enhancing the care transitions intervention protocol to better address the needs of family caregivers.
Journal of Healthcare Quarterly, 37(1).
Method/Intervention: The intervention consists of a hospital visit, a home visit and at least three follow-up phone calls. Patients and caregivers are
provided with skill transfer and self-management techniques. The enhancement reflects areas of care that caregivers identified as wanting additional
preparation and more confidence to carry out. Coaches worked alongside family caregivers to achieve better preparation prior to and post discharge.
Implications/Next Steps: Patients were aged 65 and older admitted to acute care setting in the U.S.

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Family-Centered Objective: To promote functional recovery in hospitalized older adults through recognizing that the family caregiver can serve as an invaluable
Function Focused resource if engaged and prepared prior to discharge.
Care (Family-FFC) Participants & Setting: Three medical units of a community teaching hospital in the U.S. Patient-caregiver dyads in the final control group (46) and
intervention group (49).
Methods/Intervention: A family-centered resource nurse (FCRN), a registered nurse, committed 10 hours a week to implement the intervention. The
intervention included education and training for both staff and family caregivers including communication training for staff, inclusion of patient and
family at shift change reports and plans that outline family caregiver involvement in care. Staff education and training occurred prior to the inclusion of
family caregivers and patients in the intervention to ensure readiness.
Outcomes/Outputs: The intervention was associated with a significant increase in preparedness for caregiving (using the Preparedness for Caregiving
Scale). Demonstrated the positive influence of education and engagement on family caregivers preparedness for caregiving. Family caregivers exposed
to the Family-FFC had less anxiety and modestly less depression than controls.
Implications/Next Steps: The intervention results underscore the opportunity that hospitalization provides to support the effectiveness of family
caregivers. Planned next steps include a cost analysis. The authors published a study about the use of this intervention for family caregivers of persons
with dementia and reported similar caregiver related outcomes including increased preparedness for caregiving.

Further information:
Boltz, M., et al., (2014). Testing a Family-Centered Intervention to Promote Functional and Cognitive Recovery in Hospitalized Older Adults. Journal of
the American Geriatrics Society, 62(12). http://doi.org/10.1111/jgs.13139 )
Dr. Marie Boltz Bio

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Appendix 4: Caregiver Framework for Older Persons and Caregiver Framework for Children with Medical Complexity
Name Description
Caregiver Objective: To support at-risk caregiver for older home care clients. The aim is to increase resiliency in caregivers and their capacity to continue providing care
Framework through the provision of a platform of supports.
for Older Participants & Setting: Designed to support caregivers of home care clients providing at least 10 hours of direct care per week and identified to be at risk of
Persons burnout using the interRA- HC or Caregiver Distress Scale. In total, 406 at risk caregivers participated and of these 65 received renewed funding in years 2 and 3
of the project.
Methods/Intervention: A supported self-directed care model was employed where caregivers chose how, when and where to receive goods and services such as
equipment, bill payments and respite. The intervention included solution-focused counselling and case management and caregiver education using resource
sheets and disease-specific literature. Joint design of care plans between the care coordinators and caregivers took place. The initiative is based on the U.S. Cash
and Counselling Program, SE LHIN/VON Seniors Managing Independent Living Easily (SMILE) and Choice in Supports for Independent Living (CSIL). It is led by the
Alzheimer Society of Toronto, in partnership with the Toronto CCAC, and 6 community support service agencies. The project was funded by the Aging at Home
Strategy via the Toronto Central-LHIN. Case managers or other health care staff worked with caregivers to negotiate flexible support packages in consultation
with caregivers to meet their self-reported needs with a discretionary budget of approximately $1,500 per caregiver. The project used a model designed to meet
caregiver needs as defined by caregivers.
Outcomes/Outputs: A multi-stage, mixed-methods formative evaluation was conducted (Warrick et al., 2014). The funding was spent in the following way: 35%
included informal respite (relative, friend, neighbour), 25% health care supplies, 24% social activity /self-care; 23% personal support worker; 20% equipment, 17%
bill payment, 16% physiotherapy, 16% transportation; 12% home help, 8% adult day program; 7% short stay respite in facility.
Next Steps/Implications: To date this program has served 1007 clients. The program is still only available to residents within the Toronto CCACs. No expansion or
additional evaluation is currently planned.
Caregiver Objective: To support at risk caregivers of children with multiple chronic needs living in the community.
Framework Participants & Setting: 52 caregivers of children with medical complexities participated; caregivers under stress due to the degree and/or intensity of caregiver
for effort in meeting the health needs of the child.
Children Method/Intervention: A supported self-directed care model was employed where caregivers chose how when and where to receive goods and services such as
with funding for services, equipment, bill payments and respite. It was led by the Hospital for Sick Children, in partnership with the Toronto CCAC and Holland
Medical Bloorview Kids Rehabilitation Hospital. Funded by the Toronto Central LHIN. Relied on key workers who provided ongoing education, counselling and care
Complexity management to assist caregivers in planning over the longer-term. Case managers called key workers collaborated with parent caregivers to negotiate and
discuss different options. Caregivers choose how, when and where to receive goods and services. While they started with a fixed menu of services, they adjusted
the program to reflect a caregiver driven approach to support needs. Caregivers worked with key workers to problem-solve and find the best support options
based on their own identified needs. . The program ran from 2011 to 2013.
Outcomes/Outputs: The project included a multi-stage, mixed-methods evaluation. It was not possible to demonstrate a direct causal link between the
intervention and outcomes but benefits reported included strong overall satisfaction, mainly with the key workers; caregivers reported feeling less nervous and
stressed and more confident about where to find help, and more able to continue care for their children for the long-term. Providing cash support is not enough -
the key workers were identified as critical to helping caregivers navigate a fragmented system.
Next Step/Implication: Recommendation is to seek out caregivers prior to discharge and find them before they reach breakdown.

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Appendix 5: Royal College of General Practitioners (UK) Supporting Carers in General Practice Programme

The Supporting Carers in General Practice Programme closed on March 31st 2015 but produced valuable resources that will be of interest to any
organization attempting to improve carer identification and support within primary care. This programme was a 5-year project aimed at
increasing the identification of carers and increasing support for carers in GP practices in England. The overall goal was to get GPs to think more
about carers because GPs are well positioned to identify carers both carers who were their own patients and carers who accompanied patients
to appointments. As part of this project, and in collaboration with NHS England and NHS Improving Quality, the Commissioning for Carers
Principles were developed. In addition, a self-assessment questionnaire was developed to provide support for commissioners to invest in carers
based on evidence (see Commissioning for Carers). These principles now form part of the NHS Englands Commitment to Carers (May 2014).

Numerous resources were developed to help GPs and primary healthcare staff in their support of people with caring responsibilities including: a
Supporting Carers Action Guide; a Supporting Carers eLearning Programme; a Training DVD for GPs and practice teams; a Commissioning for
Carers Guide; and an Educational Framework and Learning Resource for GPs and primary care teams (see: the project website).

Three components of the project were particularly useful.

(i) RCGP conducted four evidence summits across England, in partnership with NHS England and NHS Improving Quality. Participants came
together to share examples of good practices that were currently implemented and could be replicated. They discussed how they were
funded and the barriers and facilitators to implementation. Over 300 people attended various events and these included carers who shared
their experiences. The carer stories were critical to the success of the events and were impactful for participants.
(ii) The GP Champions for Carers programme consisted of a team of GP carer champions that worked in their local areas to raise awareness
about carers. GPs applied for a position on this team and were selected to participate. At any given time, the team consisted of 7 to 10 GPs
throughout the 5-year programme.
(iii) The development of the Caring for Carers Hub is an online platform that contains generic national information about carer support, and
provided a platform for clinical commissioning groups (CCGs) to add local information, such as support group locations. Because the hub can
be populated with local information, it is completely unique to that locality. Although the reach of the Caring for Carers Hub was never as
wide as they thought it could have been, the idea resonated for project participants. There are 7 sites that are still live across England.

Key learnings from the project included: the need to embed carer awareness and carer friendly concepts within the practice team structure and
culture so that identifying and supporting carers became second nature; initiatives may start with one champion but a team approach is critical,
as is working with local carer support organizations (Watkins et al., 2013). The main challenge was not changing the hearts and minds of
practitioners, but rather it was trying to identify carers.

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