SUPPORTING FAMILY CAREGIVERS PROVIDING COMPLEX CARE

AARP PUBLIC POLICY INSTITUTE

November 2020

 

Theme

COMMUNICATION PRACTICES TO IMPROVE
PATIENT AND FAMILY ENGAGEMENT:

10 WAYS TO IDENTIFY AND ENGAGE FAMILY CAREGIVERS IN HOSPITALS

 

ABOUT THE SERIES
Supporting Family Caregivers Providing
Complex Care

The Caregiver Advise, Record, Enable (CARE) Act is now
law in more than 40 states and territories. Policy makers
recognize that family caregivers need support to perform
the medical/nursing tasks they face at home after a

family member or friend is discharged from the hospital.

The landmark 2012 AARP and United Hospital Fund
report Home Alone: Family Caregivers Providing Complex
Chronic Care, funded by The John A. Hartford Foundation,
drove rapid adoption of the CARE Act. The report also
inspired the creation of the Home Alone Alliance®", a
partnership of public, private, and nonprofit US
organizations coming together to change the way health
care organizations and professionals interact with
family caregivers.

Home Alone Alliance members are conducting a national
CARE Act implementation scan to identify promising
practices in hospitals and ways to overcome barriers.
Some practices involve applying proven strategies to
empower a new audience-family caregivers. Ten major
themes emerged and provide a glimpse into the value
and complexity of CARE Act implementation.

The Supporting Family Caregivers Providing Complex
Care series includes 10 papers that highlight these
themes. The series also features Promising Practice
papers that provide specifics on a single practice in
one health care system and Spotlight papers that
describe innovative state efforts to promote change or
a health care system that is implementing multiple
practices simultaneously. See www.aarp.org/
nolongeralone.

These early snapshots from the field share insights about
how hospitals are supporting family caregivers and open
a dialogue among leaders involved in enhancing health

care delivery. These early observations ultimately could

inform practice recommendations.

Overview

Communication is at the core of successful care coordination
and collaboration with family caregivers-the people in the
patient's social support system who will help manage care
at home after discharge from the hospital.

Health care systems identify and engage family
caregivers to achieve the following benefits:

e Enhance inpatient care plans and outcomes
through collaboration.

e Prevent discharge delays and readmissions by
preparing family caregivers to safely perform
medical/nursing tasks and detect early signs
of complications.

e Decrease family caregiver emotional, practical,
and financial strain.

Instructing family members who will perform medical/
nursing tasks after a hospital discharge is sound policy
that's good for business. Involving family caregivers during
the hospital stay reflects a commitment to person- and
family-centered care and improves outcomes for all people,
regardless of their age or diagnosis, and to the family
members, neighbors, and friends who support them.

Health care systems increasingly expect family caregivers,
who are often unprepared, to perform complex care after
a family member or friend is discharged from the hospital.
Providing family caregivers with instruction and guidance
throughout the hospital stay can significantly help them
manage the individual's ongoing comfort and quality of life
and prevent complications at home that can lead to
emergency department visits and readmissions.

Hospitals enhance their communication processes with
these critical members of the care team in many ways.
The first step is to recognize and value family caregivers
as integral members of the health care team who should

 
Communication Practices to Improve Patient and Family Engagement

 

be included in planning and prepared for this phase of
their caregiving journey. The process starts with
identifying who should be included in care coordination
discussions as a family caregiver.

Identifying Themes from
Hospital Visits

To learn how hospitals are supporting family caregivers
after CARE Act implementation, we assembled a research
team of Home Alone Alliance and AARP Public Policy
Institute leaders, nurse researchers, and policy experts to
design and conduct site visits to hospitals across the
country. This work was funded in part by The John A.
Hartford Foundation, the Ralph C. Wilson, Jr. Foundation,
and AARP.

The research team has visited dozens of health systems
and hospitals in Arkansas, California, Colorado, Illinois,
Michigan, Nebraska, Nevada, New Jersey, New York,
Virginia, and West Virginia. We typically meet with leaders
and staff from at least two health systems per state and
two to three hospitals per system. The team visits a variety
of types of hospitals: nonprofit, for-profit, and government
hospitals; academic health centers; midsize suburban
systems; critical access hospitals in rural communities;
and level | through V trauma centers.

Participant informants include chief nursing officers, chief
technology officers, service and unit managers, patient
experience leaders, quality champions, administrators,
educators, front-line nurses, physicians, electronic health
record (EHR) leaders, and staff from areas such as clinical
and social services, accountable care organizations,
pharmacy, registration, and admissions. We consult
individuals from family advisory councils, community-
based organizations, AARP state offices, consumer
advocacy organizations, professional groups, and state
hospital associations. We conduct focus groups with
family caregivers who have had a recent experience with
a particular hospital or system. Interviews are recorded
and then analyzed, identifying common themes and

novel approaches.

The intention of the Supporting Family Caregivers Providing
Complex Care series is to describe the experiences of

those making changes that align with the CARE Act. These
early snapshots from the field describe the highlights of

Emerging Themes of the Supporting Family
Caregivers Providing Complex Care
Publication Series

= Communication practices
e Learning resources for family caregivers
° Staff training

e EHR supports to identify and include family
caregivers

e Transition in care programs and postdischarge
support

e Approaches to making practice and system
changes

e Pharmacy innovations

e Screening practices

e Addressing needs of specific populations
e Benefits of the CARE Act

supports in place for family caregivers who provide
complex care at home to a family member or friend after
discharge from the hospital. The series opens a dialogue
among health care leaders with a wide variety of
perspectives. The papers share insights and could form
the basis for future recommendations about supporting
family caregivers.

The Need

As health systems increase expectations for family
caregiver participation at home after discharge, the
need for family caregiver preparation increases. That
preparation includes communication between clinicians
and family caregivers throughout the hospital stay.

Hospital leaders see the need to develop new practices for
communicating the complex information family caregivers
need to safely provide follow-up care at home. Family
caregivers need to acquire information that previously

fell within the purview of health care professionals. This
information includes understanding the purpose of a
specific task, the proper procedures for performing the
task, potential complications or side effects to look for,
what may happen if the task is not performed, and when
and whom to call for help. Some tasks require special
supplies or equipment, and all require focused attention.'

 
Communication Practices to Improve Patient and Family Engagement

 

 

Communication Gaps: A Vignette

The example below illustrates common gaps in
communication between clinicians and family caregivers,
subsequent consequences, and opportunities for system
change. The promising practices shared in this paper
can help prevent those gaps.

Example: Daniel has multiple conditions,

including mild cognitive impairment. He is

hospitalized for shortness of breath
associated with his congestive heart failure. His wife,
Florence, is exhausted from caring for him at home and
is upset that he had to go to the hospital again. While
Florence is out of the room, the pharmacist comes by
to give Daniel instructions about new medications, how
to record his symptoms, and what changes to report.
The pharmacist isn't aware of Daniel's cognitive
impairment. During the discharge process, a nurse
gives Florence information about picking up a new
digital scale and blood pressure cuff. The nurse also
instructs Florence to record Daniel's vital signs and
weight daily and to call if he experiences certain
symptoms. Florence waits for hours for his prescription
medications and oxygen supply.

Once they get home, Florence helps Daniel to his chair.
The exertion of the trip home has tired him out, and he
is very short of breath and anxious. Florence checks
the instructions she received and notices the
medications are different from those he had previously
been prescribed. She isn't sure whether she should

give him his usual medications along with the new
ones. Daniel can't remember what the hospital
pharmacist said. The oxygen company is scheduled to
come by later that day, but Florence is not sure when
and Daniel's supply is low. Florence decides to continue
giving Daniel his previous medications until they see his
doctor the next week. Over the next day, Daniel has
more difficulty breathing, his ankles swell, and he is
very anxious. Florence is worried and takes him back to
the hospital.

AN

eee

Repercussions: Daniel was readmitted and
Florence was distraught. She feels she is on a
rollercoaster and is losing confidence in her
ability to care for Daniel.

Opportunity: The hospital could establish
processes to identify caregivers and assess
how willing, able, and prepared they are to
provide care at home. Family caregivers like Florence
are already overwhelmed and could benefit from
additional supports to bolster their ability to provide care.

An interprofessional team approach would contribute to
more comprehensive management of the many issues
that families are managing. The staff would
communicate better with one another about the
treatment plan and include family caregivers like
Florence in the planning as well as provide hands-on
instruction. Having more family caregiver support in the
hospital and better support for the transition home
would create a better experience for Daniel and
Florence and help prevent readmissions.

The Importance of Identifying the Family
Caregiver
Half of family caregivers in the United States-20 million

people-perform complex medical/nursing tasks,
including, but not limited to, the following:

e Administration and management of medications,
including pills, eye drops, suppositories, and injections

e Care for wounds and ostomies to enhance healing and
prevent infection

e Insertion of catheters to assist with urinary elimination
® Operation of specialized medical equipment and devices
e Assistance with mobility challenges

e Preparation of special diets with strict requirements and
new foods

e Management of prolonged or intense pain?

Many family caregivers do not receive instruction on how
to perform the medical/nursing tasks they are expected to
manage at home.' It is critical for family caregivers to have
the information they need to provide that care safely-to

 
Communication Practices to Improve Patient and Family Engagement

 

help promote good health outcomes and help prevent
complications and hospital readmissions. Preparation for
managing complex care at home includes anticipating not
only the practical aspects but also the emotional and
financial strain.

People who are hospitalized may identify one or more of
these individuals as a family caregiver:

e@ Family member
e Life partner

e Friend

e Neighbor

Under many circumstances, when 24-hour care is required,
an individual relies on several family caregivers to rotate
shifts. Once active family caregivers are identified, hospital
staff can assess their readiness and prepare them to
provide the complex care required after discharge.

Family caregivers often are not aware of signs of normal
healing compared with symptoms of abnormal changes
that require professional attention. Many family caregivers
worry about making a mistake, which only adds to the strain
they experience in providing care. Those who worry about
making a mistake often feel they have to be vigilant;
compared with other family caregivers, those who worry
about making a mistake find caregiving tasks to be more
difficult.* Health care professionals can make a difference in
preparing family caregivers for both the procedural and
emotional aspects of assuming the responsibility of
medical/nursing tasks.

More and/or better instruction is the most common
response from family caregivers when asked what would
make it easier to perform medical/nursing tasks at home.
Preferred instruction formats include additional exposure
to the content, practice with supervision, written
instructions, visual instruction, videos, consistency in
instructions, and a phone number to call with questions.®

Family caregivers need instruction on the following:

@ How to perform medical/nursing tasks

® Side effects to watch for

® Indications of improvement and recovery
e The first signs of potential complications
e Using devices and equipment

@ When and whom to call for help and information®

Differences among Family Caregivers
That Affect Their Capabilities

While discharge instructions can be viewed as "tasks," they
also carry meaning for family caregivers in terms of worry
about performing the task and the implications for their
daily routine. Just as caregivers are diverse, interventions
to meet their needs for support and guidance must be
varied and flexible.'

Some family caregivers have physical limitations or cognitive
decline that interferes with their ability to provide care at
home. Many are working and balancing competing demands.
Others have low health literacy and have difficulty
understanding technical written instructions,

Some family caregivers are less comfortable or adept than
others when faced with using technology, equipment, and
devices at home. As a result, they may require more training.

One in four family caregivers who perform medical/nursing
tasks is a millennial, and this group generally worries more
than older generations about making a mistake in providing
care. Multicultural family caregivers are more likely than
others to experience strain and worry about making a
mistake, regardless of income.®

Men report they struggle more with certain tasks-such as
managing pain, helping with incontinence, and preparing
special diets-and are more likely to indicate that receiving
additional instruction at home would help them. It's
important to note that, when their family member is
hospitalized, men are less likely to receive instruction on
how to perform complex tasks after discharge.'

 
Communication Practices to Improve Patient and Family Engagement

 

10 Highlighted Practices

Communication Enhancements to Workflows

Hospitals improve existing workflows in many ways to facilitate communication among family caregivers and hospital staff
(with patient permission). These enhancements span the entire hospital stay and diverse family caregiving situations. The
top communication practices from our ongoing national CARE Act implementation scan include the activities listed below.

In addition to facilitating communication between clinicians and family caregivers, many of these enhancements also
facilitate communication among clinicians across different roles and shifts.

 

1) Asking "Who will help at home after discharge?"
Staff document family caregiver contact information,
readiness, instruction received, and knowledge gaps
and explain to all involved why it is important for
family caregivers to be included in care discussions
and receive instruction.

 

(2) Using the teach-back method during routine
bedside care to ensure family caregivers understand
instructions, can repeat back what they've learned,
and receive feedback-so they have confidence in
providing care at home

for a family caregiver to provide relevant information,
ask questions, demonstrate understanding, and
participate in decision making; using the patient
motto "nothing about me without me"

 

(6) Initiating team huddles to facilitate discussions
among multiple types of stakeholders, including
family caregivers

 

(7) Fostering interdisciplinary rounds that include the
family caregiver and enable consulting specialists to
coordinate decision making

 

€) Providing name tags for family caregivers to help
nursing staff identify the individual(s) they should
instruct in postdischarge care

 

(4) Adding the names of family caregivers on white
boards in the hospital room-and perhaps other
details, such as contact information, goals of care,
and expected discharge date-so that all staff are
aware of the caregivers, which can facilitate clear
communication among all involved. In some hospitals,
family caregivers are encouraged to write questions
or comments on the white board.

 

(5) Including family caregivers in shift changes as a
means of providing a status update and an opportunity

 

(8) Facilitating postdischarge communication, such as
follow-up phone calls soon after discharge, so family
caregivers can obtain reinforced instruction and ask
questions after they get home to help prevent
complications and readmissions, Some hospitals also
use the information they gather in those calls for
ongoing quality improvement in preparing for discharge.

 

(9) Introducing family caregivers to postdischarge
resources, with hospital staff conducting warm
hand-offs

 

(40) Telling family caregivers how to prevent specific
complications, which increases family caregiver
confidence and attentiveness

 
Communication Practices to Improve Patient and Family Engagement

 

Getting Started: Communication
Processes and Ownership

As hospitals transition to person- and family-centered
care, enhancements to workflows begin with setting
the tone in communication for collaborating with family
caregivers and using the EHR as the foundational
structure for standardizing ongoing interactions and
communications among staff.

Establishing Ownership

lt is critical to communicate at the outset which group

of hospital stakeholders is responsible for preparing
family caregivers to provide posidischarge care. This

helps all involved understand their roles and individual
accountabilities in identifying family caregivers,
documenting their contact information, and including them
in care management throughout the hospital stay.

Identifying and documenting family caregivers should not
be the responsibility of a single individual. Staff in at least
two different roles should share responsibility to ensure
identification takes place either upon admission or shortly
thereafter. Some hospitals train registrars and emergency
department staff to enter family caregiver information into
the EHR at intake and train admissions and nursing staff
to differentiate among the next of kin, legal guardian, and
family caregiver to determine if those descriptors refer

to one individual or to two or three different people. This
helps prevent staff from providing information to someone
who should not have access to it.

Determining Roles and Responsibilities

While everyone in the hospital who interacts with family
caregivers helps establish positive collaboration and
communication, it's vital to ensure that all team members
understand their role. Promising practices indicate the
clear value of taking steps like these:

e Determine which staff members will do the following:
m Ask who will help at home after discharge.
m Document this choice.

m Explain to all involved why it is important for family
caregivers to be included in care discussions and
receive instruction.

e The next step is for these staff members to welcome
each family caregiver to the team and explain how the
hospital staff will interact with each individual during the

hospital stay. Continuing communication and building
rapport with family caregivers, especially the individual
serving as the primary family caregiver, throughout the
hospital stay helps ensure discharge readiness and
successful care delivery at home.

e The backdrop of that communication should include staff
actively seeking information about the goals, values,
fears, and preferences of the person receiving care to
ensure that the care plan is holistic and accounts for
those factors. Addressing these aspects throughout
the hospital stay helps set expectations for staff and
families for promoting a successful outcome given the
circumstances.

e In parallel, all members of the care team should
document key data points in the EHR, enabling all
involved to access family caregiver information
throughout the hospital stay to facilitate care
coordination. These data points include the following:

m Family caregiver name and relationship to the patient
(if more than one caregiver, indicate which individual
will serve as the primary point of contact)

m Contact information

m Assessment and level of readiness of each family
caregiver named

m Remaining knowledge gaps and actions to address
those gaps

Quantifying the Benefits

Benefits of Identifying and Including
Family Caregivers

For Staff

e Preventing discharge delays-Identifying family
caregivers helps hospital staff avoid discharge delays.
Staff can provide and reinforce instructions gradually
throughout the hospital stay rather than deliver large
quantities of information to distracted family caregivers
during the flurry of discharge activity. They can also
better coordinate discharge scheduling.

e Streamlining staff communication with family
members-Family caregivers can relay information
to other family members and friends, saving hospital
staff the time and energy spent repeating the same
information to multiple individuals. When families are

 
Communication Practices to Improve Patient and Family Engagement

 

uncertain about who is the most suitable person to
serve as the primary family caregiver, offering time

for families to come to consensus is helpful. Allowing
extra time also helps when large families want to divide
caregiving tasks among multiple individuals.

Taking advantage of the knowledge family
caregivers have about the person receiving care-
Family caregivers can share relevant details about the
hospitalized person's goals, values, fears, preferences,
and responses to treatment. They can also recognize
subtle changes that signal a need for intervention

and provide additional context that can affect
decisions about care. Having information about unique
circumstances such as social determinants of health,
known medication side effects, delirium, dementia, and
substance use can be vital in developing a successful
care plan.

Instructing the right person in postdischarge care-
By correctly identifying the person or people who will
be helping at home, hospital staff can focus their efforts
appropriately. It is vital to ask who will serve as the
primary family caregiver because staff may not ever
encounter that individual in the hospital room. It is also
important to let families Know they should inform the
hospital staff if someone else becomes the primary
family caregiver.

For Families

Detecting complications early to prevent problems
that can lead to readmissions-Qualitative data
indicate that discharged patients may be less likely to
have a complication at home that interferes with their
recovery or requires an emergency department visit or
hospital readmission when staff members assess family
caregivers and fully prepare them for the care they

will be providing. When family caregivers understand
how to identify a potential complication early, they can
seek help before the problem requires treatment in the
hospital setting.

Decreasing family caregiver emotional, practical,
and financial strain-Family caregivers who are
adequately prepared to provide care at home can
experience reduced strain and disruption of daily life
during and after a family member's hospital stay. They
are better equipped to manage complex medical/nursing

tasks and pain, which is a major issue that carries an
emotional as well as practical and sometimes financial
strain."

When family caregivers understand what to do and
expect and how to look for potential complications, they
have increased confidence and attentiveness. Good
preparation allows them to focus at home on providing
emotional support to the care recipient and to improve
their own health and well-being. And a confident family
caregiver increases the confidence level and emotional
comfort of the person receiving care.

e Facilitating continuity of care-Designated primary

family caregivers with a good understanding of the care
they will be providing at home can serve as the main
point of contact to ensure continuity of care before,
during, and after a hospital stay. The hospitalized
individual may move to a skilled nursing or assisted-
living facility o-more commonly-back home or to

a family member's home. Continuity of care during

all transitions within and outside the hospital helps
ensure medication reconciliation and accurate and
complete communication of patient-specific details,
including values and preferences, and prevents care and
communication gaps, errors, and omissions.

e Arranging appropriate support at home to foster

a successful recovery-By having early and ongoing
conversations about care for the individual after
discharge, staff and family caregivers can collaborate to
determine what will be needed and arrange for adequate
instructions, supplies, and equipment necessary to
manage medical/nursing tasks at home and any further
help that may be required. Staff can provide referrals

to community resources that support the plan for
postdischarge care.

Supporting independent living-Because a person's
ability to continue living independently can depend on
the care he or she receives following hospital discharge,
it is particularly important for staff to collaborate with
family caregivers who will help people with special
needs or older adults at home. It is also helpful for
hospital staff to know if the person receiving care will
have a temporary stay at another facility, such as a
rehabilitation center, so they can provide information
that will facilitate transitions to and from that setting.

 
Communication Practices to Improve Patient and Family Engagement

 

What Does Success Look Like?

During site visits with health care organizations that are
implementing changes to include family caregivers in the
care process, we examined the impact of the enhancements.
Although hospitals use scorecards and track many
metrics, there was not universal identification of the direct
link of family caregiver engagement with improvements in
complication rates, emergency department visits,
readmissions, follow-up inbound and outbound phone
calls, and patient satisfaction.

An opportunity exists to set up a scorecard that monitors
key metrics over time with a special emphasis on linking
family caregiver interventions to specific outcomes. Health
systems can consider tracking and trending data by unit
and department to measure the impact of including family
caregivers throughout the hospital stay.

Ultimately, the best measure of success is the
experience of the family caregivers and whether they
feel included, heard, confident, and prepared to go
home for the next phase of care.

 

Overcoming Perceived Barriers

Resolving Challenges in Implementing Communication Practices

In a cohort of hospitals across the country, leaders identify obstacles to the change process and ways to overcome
them. Initial reactions to the provisions of the CARE Act by hospital leaders and staff during site interviews include

four primary concerns that ultimately diminish:

ee Challenge: Lack of necessity-"We already do
Ti what the CARE Act requires."
i

the CARE Act helps hospitals recognize the

need to standardize their identification of and
interactions with family caregivers. Initial concerns
diminish when clinicians hear poignant personal stories
about the existing gap between the information family
caregivers typically receive at hospital discharge and
the care they need to provide at home. Listening to
patient stories during Patient and Family Advisory
Council meetings or in focus groups of community
members reinforces the need for staff to consistently
identify and provide detailed information to family

caregivers. Content from the AARP Home Alone report
creates additional awareness of process gaps."

Resolution: Attention to the requirements of

ee Challenge: Flexibility-Staff members

Ti involved in the discharge process (primarily
nurses, discharge planners, and case

managers) note concerns that new processes would

be restrictive and create an additional burden for

already maximized workloads.

e Resolution: Hospitals manage the change

i process by examining the discharge planning

workflow, streamlining processes, and

clarifying and standardizing the language staff use to
identify family caregivers.

ee Challenge: Liability-Hospitals are concerned
Ti about creating Health Insurance Portability

and Accountability Act (HIPAA) issues and the
hospital being perceived as bearing responsibility for
the health or well-being of family caregivers as well as
negative outcomes at home.

Resolution: By more closely examining the
provisions of HIPAA, hospitals clarify that,
with patient permission, inclusion of family
caregivers does not pose a legal risk.

i

ee Ry Challenge: Delay of discharge-Operationally,
Ti discharge can be delayed when a family
caregiver and staff are unable to coordinate
schedules for instruction. People considered unsafe

to discharge because the primary family caregiver

is not ready or able to provide care at home may
unnecessarily remain at the hospital for additional days.
@

i staff to begin the process of discharge
planning at admission, are flexible in the

timing of instruction, and communicate clearly to family
caregivers about the planned discharge date and time.

Resolution: Successful organizations prepare

 

 
Communication Practices to Improve Patient and Family Engagement

 

Additional Information
Implications of COVID-19

The COVID-19 (severe acute respiratory syndrome
coronavirus 2) pandemic has intensified the importance of
identifying and engaging family caregivers. Strict visitor
policies have hampered the ability of family caregivers to
be part of the hospital experience and be available to support
their family member and participate in care. Limited
face-to-face interaction between hospital staff and family
caregivers hinders communication about contextual
details and decision support-creating challenges for staff
members to maintain care quality and for family caregivers
to obtain guidance and instruction on postdischarge care.

Innovations are emerging to foster communication and
support caregivers in new ways through technology. The
timely launch of the rting Family Caregiver:
Providing Complex Care publication series highlights a
wide variety of promising practices in family caregiver
support just when they are most urgently needed.

Helpful Resources

The CARE Act

The name of the law and its specific provisions vary by
state, but CARE Act legislation generally requires that
hospitals do the following to support family caregivers:

e Advise individuals in the hospital of their opportunity to
identify a family caregiver.

e Record the caregiver's name and contact information in
the health record (with the patient's permission).

e Enable family caregivers by providing as much notice as
possible about discharge timing, consulting with them
about the discharge plan, discussing their role in
carrying out that plan, and instructing them on the
medical/nursing tasks they will handle at home.

See the CARE Act map, which shows more than 40 states
that have passed the legislation.

Researcher Contact Information
for Health System Leaders

The Home Alone Alliance and AARP Public Policy Institute
leaders, nurse researchers, and policy experts continue to
conduct the national scan of hospitals that have implemented
the CARE Act and will share further results of that work. We

welcome the opportunity to discuss findings with health
system leaders to facilitate the culture change involved in
fundamentally integrating family caregivers into existing
hospital practices. To contact us, please email

homealonealliance@aarp.org.

Free Video Demonstrations of Medical/Nursing
Tasks for Family Caregivers

How-to videos and printable resource guides created
specifically for family caregivers show how to manage
specific tasks related to wound care, mobility, managing
medications, preparing special diets, and handling
incontinence. These resources, many of which are
available in both English and Spanish, are free of charge

to all. Visit aarp.org/nolongeralone.

Related Publications for Professionals, Clinicians, and
Policy Makers

To see details and data about the 20 million family
caregivers in the United States who perform medical/nursing
tasks and worry about making a mistake, see Home Alone
Revisited: Family Caregivers Providing Complex Care, a
2019 special research report by the founding partners of
the Home Alone Alliance™, a collaborative of AARP, and
funded by The John A. Hartford Foundation."

The Supporting Family Caregivers Providing Complex Care
series of publications is based in part on insights in Home

Alone Revisited and The CARE Act Implementation:
Progress and Promise, a 2019 AARP Public Policy Institute
Spotlight report.'**

The American Journal of Nursing (AJN) publishes

award-winning evidence-based, peer-reviewed articles
and videos that teach clinicians how to best support
family caregivers. A/N also disseminates the work of the
Home Alone Alliance to nurses through editorials,
podcasts, and social media content. Home Alone Alliance
articles approved for continuing education credit

are funded by AARP, The John A. Hartford Foundation, the
Retirement Research Foundation on Aging, and the Ralph
C. Wilson, Jr. Foundation.

The National League for Nursing (NLN) offers simulation
modules nurse educators can use at no cost to teach
students about the individualized needs of family caregivers.
The Advancing Care Excellence for Caregivers (ACE.C)
program was developed with generous funding from The
John A. Hartford Foundation and the AARP Foundation.

 
Communication Practices to Improve Patient and Family Engagement

 

Additional Theme Papers in This Series

e Learning Resources and Practices to Improve Patient
and Family Engagement: 12 Ways to Facilitate Family

Caregiver Education in Hospitals (PDF)

e Staff Training Practices to Improve Patient and Family

Engagement: 16 Ways to Include Family Caregivers and
Prevent Discharge Delays (PDF)

e Flectronic Health Record (EHR) Practices to Improve Patient

and Family Engagement: 9 Ways to Help Staff Access Data
on Family Caregiver Discharge Preparation (PDF)

Publications in the Supporting Family Caregivers Providing
Complex Care series are available at www.aarp.org/
nolongeralone. For more information about the CARE Act,
visit the AARP Public Policy Institute website or https://
states.aarp.org/tag/the-care-act. To learn more about the
Home Alone Alliance, visit www.aarp.org/nolongeralone.

Series Authors

Authors of the Supporting Family Caregivers Providing
Complex Care series of publications:

e Susan C. Reinhard, RN, PhD, FAAN, Senior Vice
President and Chief Strategist, Nursing Workforce and
Family Caregiving Initiatives, AARP Public Policy
Institute. @susanpolicy

e Heather M. Young, RN, PhD, FAAN, Senior Fellow AARP
Public Policy Institute; Professor, Betty Irene Moore
School of Nursing, University of California, Davis.
@YoungHeatherM

® Rita B. Choula, MA, Director, Caregiving, AARP Public
Policy Institute. @rchoula

e@ Karen Drenkard, RN, PhD, FAAN, NEA-BC, Associate
Dean, Clinical Practice and Community Engagement,
The George Washington University School of Nursing.
@DrDrenk

e Beth R. Suereth, Founder and Chief Executive Officer,
Caregiving Pathways. @BethSuereth

 

'Susan C. Reinhard et al., Home Alone Revisited: Family Caregivers
Providing Complex Care (Washington, DC: Home Alone Alliance, 2019),
https://www.aarp.or i/issues/caregivin

2-10 Ibid.

" Susan C. Reinhard et al., Home Alone: Family Caregivers Providing
complex Care (Washington, DC: AARP Public Policy Institute, 2012),
htt www.aar

he me-fami regiving /info-10- 2012

 

1213 Susan C. Reinhard et al., Home Alone Revisited.

4 Susan C. Reinhard et al., The CARE Act Implementation: Progress and
Promise (Washington, DC: AARP Public Policy Institute, March 2019),

 

Supporting Family Caregivers Providing Complex Care
Theme Paper #1003, November 2020
© AARP PUBLIC POLICY INSTITUTE
601 E Street, NW
Washington, DC 20049

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For more reports from the Public Policy Institute, visit the Public Policy Institute website.

a

Home Alone Alliance

a collaborative from AARP

 

10