SUPPORTING FAMILY CAREGIVERS PROVIDING COMPLEX CARE

AARP PUBLIC POLICY INSTITUTE

November 2021

 

Theme

ADDRESSING NEEDS OF SPECIFIC POPULATIONS
TO IMPROVE PATIENT AND FAMILY ENGAGEMENT:

21 WAYS HOSPITALS TAILOR FAMILY CAREGIVER SUPPORT BY CULTURE AND CONDITION

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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

Health care system leaders recognize that specific
populations of family caregivers each face distinct
challenges as they provide increasingly complex care
at home after a hospital discharge.

Hospital staff provide guidance and instruction on
medical/nursing tasks to meet needs that vary based
on cultural background, age of the person receiving
care, and whether the family caregiver is a family
member, neighbor, or friend.

They also tailor family caregiver support to meet the
wide variations in needs arising from vastly different
health conditions, such as dementia, cancer, diabetes,
stroke, and depression.

Hospitals proactively address the needs of family
caregivers caring for specific populations such as:

e People with specific health conditions, including
chronic diseases;

e Individuals taking certain high-risk medications;

e Older adults with needs related to polypharmacy,
dementia, and hospice;

e Culturally/racially/ethnically distinct communities,
including those who may be underserved; and

e People receiving palliative care for chronic conditions.

Methods hospitals use to support family caregivers from
diverse communities include:

e Culturally congruent translations of materials in multiple
languages and formats;

e Staff training on diversity issues that need to be
addressed in their service area;

e Assessment tools to address barriers and identify
cultural, language, visual, and hearing preferences;

e Teach-back interventions;

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

@ |n-person, audio, and video remote interpreting and
tools for the hearing impaired; and

e Partnerships with community-based organizations to
coordinate support throughout the care continuum.

Some supports were partially in place before the CARE Act
and hospitals make them consistent across the
organization. Some are new innovations developed before
and during the COVID-19 (severe acute respiratory
syndrome coronavirus 2) pandemic.

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 at 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 level 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

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

= Addressing needs of specific populations
e Learning resources for family caregivers

¢ Communication practices

¢ 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 Benefits of the CARE Act

snapshots from the field describe the highlights of 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

Addressing Diverse Needs of
Family Caregivers

Every caregiver functions in a situation comprised of
numerous variable and intertwined socioeconomic and
health factors and forces. Figure 1, Heterogeneity of
Caregiving, organizes those elements with the family
caregiver at the core. The figure originally appeared in 7he
Gerontologist, a publication of the Gerontological Society
of America, in an article titled Social Determinants of
Health: Underreported Heterogeneity in Systematic
Reviews of Caregiver Interventions by Heather M. Young,
RN, PhD, FAAN, et al.'

Common elements: Elements that are common across
a broad spectrum of family caregivers can be addressed
when serving the general population of older adults.

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

Figure 1: Heterogeneity of Caregiving

  
 

 
  

  
  
 

 
  

Virtually all family caregivers need:

e Fundamental information about their role during the
hospital stay and at home after discharge;

e Guidance and support to understand the importance
of participating in care discussions and instruction on
handling medical/nursing tasks; and

e Confidence in their ability to provide complex care at
home safely and effectively.

Context-specific elements: Some elements are context
specific. As hospital staff provide support, guidance,

and resources, they must account for family caregiver
differences and influences as displayed in Figure 1 and
described below.

Carer/Family Caregiver

A family caregiver is known as a Carer in many countries,
including Australia and much of Europe. Factors specific to
an individual carer/family caregiver include, but are not
limited to, age, gender, sexual orientation, cultural
background, race/ethnicity, employment, religious
affiliation, socio-economic status, and physical and mental
health. The information in this section provides details on
some of these factors.

Caregiving
Context

Living situation/proximity, setting, financial resources, community
resources and characteristics

Caregiving
Characteristics
Length of caregiving, carer experience and skills, carer

communication and advocacy skills, motivation, relationship quality, strength of
network, other family obligations

Person
Receiving Care

Relationship, disease/condition, functional/cognitive status, abilities
and strengths, health care needs

Carer

Age, gender, sexual orientation, cultural background,
race/ethnicity, employment, religious affiliation, socio-
economic status, physical and mental health

       
     
 
  

 
 
 

 
   
 
  
  
 
   
 
  
 
 

 
 
 

 
 

Reprinted with permission

e Age, gender, and sexual orientation

Caregiving is multigenerational for both men and women.

m Different age cohorts of family caregivers face
distinct challenges for their life stage. Consider this
data about millennial caregivers:

¢ Twenty-five percent of caregivers are millennials,
and 40 percent of millennials and younger
caregivers are supporting someone with a
behavioral health condition; these younger
generations of family caregivers experience
almost twice as much difficulty managing
medications as older generations."

¢ Millennial caregivers, on average, have been
providing care for a comparatively short period of
2.9 years in a moderate-to-high intensity care
situation; half are the sole unpaid caregiver and
fewer report having paid help compared with
caregivers of older generations.°

m On average, Gen X caregivers have been caring for their

care recipient for longer than younger generations.*

Their recipient usually lives with them or within 20

minutes and most are the primary unpaid caregiver.®

Most are in a moderate-to-high intensity care situation.°

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

m Men who are caregivers are less likely to receive
instruction about performing medical/nursing tasks
from health care providers.'

m More older family caregivers indicate they have no
choice in taking on medical/nursing tasks like
managing medications compared with younger
generations of family caregivers.®

= Most LGBTQ family caregivers report their recipient
lives with them in the caregiver's home or within
20 minutes.' More LGBTQ caregivers are in a high
intensity caregiving situation than non-LGBTQ
caregivers.'° They are more often the primary
caregiver for their care recipient."

e Cultural background, race/ethnicity, and language

Expectations of involvement in caregiving differ
between cultures.

m Multicultural family caregivers are more likely to
experience strain and worry about making a mistake,
regardless of income."

m Linguistically and culturally appropriate resources are
necessary because many hospitals serve communities
comprised of multiple racial and ethnic groups.
Family caregivers need resources and instruction on
medical/nursing tasks-both written and verbal-in
their own language through transcreation (ensuring
the content is consistent with the cultural context of
the specific community} instead of rote translation.
Simple translation is often not culturally appropriate or
tailored to local language variations, which can create
more confusion or potentially adverse effects for both
the family caregiver and the person receiving care."

Person Receiving Care

Factors specific to the person receiving care include, but
are not limited to, relationship to the family caregiver,
disease/condition, functional/cognitive status, abilities
and strengths, and health care needs. The information in
this section provides details on some of these factors.

e Relationship, such as family member, neighbor,
or friend

m A family caregiver may or may not be a family member.
The care recipient may be a child, spouse, sibling, or
older adult friend or parent. The type of caregiving
support needed depends, in part, on the type and
quality of the relationship between the person
receiving care and the family caregiver, regardless of
whether they are related. Needs especially vary
depending on the role each person has in a
relationship or in a family and the family dynamics.

m Friends and neighbors may have more limitations in
the responsibilities and time commitment they may
be willing to assume. Gaps may indicate a need for
social supports.

e Disease/condition, functional/cognitive status, and
risk factors of the person receiving care

a Individuals who require help from family caregivers
have conditions as diverse as dementia, cancer,
diabetes, and depression, and often more than one
condition. Therefore, caregivers are dealing with
different situational demands based on the health
conditions of the care recipient.

m Care recipients with dementia or other significant risk
factors or safety concerns may require more vigilant
attention from family caregivers.

Caregiving Characteristics

Factors specific to the person receiving care include, but
are not limited to, length of caring, family caregiver
experience and skills, family caregiver communication and
advocacy skills, motivation, relationship quality, strength
of network, and other family obligations. The information
in this section provides details on some of these factors.

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

e Length of caring and family caregiver experience,
skills, and expectations

Family caregiver readiness differs depending on where
the individual is in the trajectory of the caregiving journey.
An inexperienced family caregiver may be in shock during
an unexpected medical emergency and have difficulty
processing new information. In contrast, a seasoned
family caregiver may understand and feel confident about
the fundamentals of managing postdischarge care but
could be experiencing caregiving fatigue and physical or
mental health problems of their own as a result of years
of stressful hands-on caregiving.

e Challenges, willingness, readiness, and
knowledge gaps

Family caregiver readiness depends on the stability of a
family caregiver's physical, mental, and behavioral health,
financial resources, living arrangements, employment,
transportation, and food security. Readiness also depends
on the effects of varying levels of literacy and health
literacy and visual, hearing, and other impairments.

e Family caregiver communication skills and
preferences for learning materials

m A family caregiver assessment can reveal which
resources and communication formats will be
most effective.

m Family caregivers report they want more and/or better
instruction. More preparation would help them care
for wounds, manage intense pain, and administer pills,
suppositories, and injections.'* Caregivers' preferences
vary among practice with supervision, written
instructions, visual instructions, videos, consistent
instructions, and a phone number to call with questions."®

m Free how-to videos demonstrating medical /nursing
tasks-created specifically for family caregivers-are
available at www.aarp.org/nolongeralone. Many of
the videos are available in both English and Spanish.
Printable resources guides are also available.

Caregiving Context

Factors specific to the person receiving care include, but
are not limited to, living situation/proximity, financial
resources, and community resources and characteristics.
The information in this section provides details on some of
these factors.

e Living situation/proximity and financial resources

Every family has its own circumstances and each
caregiver comes with a unique set of attributes, so
listening to the individual concerns and priorities of each
family caregiver is important.

e Common barriers to providing follow-up care at home

m Many family caregivers do not have the financial
resources to cover the out-of-pocket costs of care,
treatments, medications, equipment, and supplies,
hindering their ability to be effective.

m Family caregivers often are not aware of community-
based resources, some of which may be available at no
or little cost. Those supports often vary by municipality,
county, and state, making it even more challenging to
navigate ways to get help.

m Long-distance family caregivers need specific types of
support that can be especially dependent on their
resources, ability to manage from afar, and willingness
and ability to travel. Many long-distance family
caregivers who want to travel to provide hands-on
care may be unable to because of barriers related to
the COVID-19 pandemic. Even local family caregivers
cannot provide help if they are in quarantine or
isolation or if hospital visitor restrictions are in place.

e Community resources

A single health care system can serve people in multiple
states across rural, suburban, and urban areas with an
array of educational and socioeconomic experiences.
Family caregivers need hospital staff to have awareness
of such differences and engage them accordingly. People
living in a rural setting, for example, may be less
accustomed to navigating the complex processes of
large organizations compared with people living in urban
areas. Rural areas may have few local resources available
for postdischarge support of the person receiving care,
which may affect the posidischarge care plan.
Transportation options vary in different geographic areas,
affecting discharge planning and timing. The availability
and affordability of internet connectivity in rural
communities can be challenging, limiting access to
telehealth services.

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

21 Highlighted Practices

How Hospitals Support Specific Populations of Family Caregivers

Health care systems use a variety of approaches to
tailoring family caregiver guidance and instruction for
different sets of circumstances. Highlighted practices
from our ongoing national CARE Act implementation scan
include the activities listed below. Hospital leaders use
one or a combination of these practices.

Health care systems focus on:

People from culturally distinct communities

 

1) The phrase "family caregiver" does not have a direct
Spanish translation. One hospital conducted focus
groups to determine an appropriate word; they use
cuidadore. AARP, on its Spanish-language website,
uses "los cuidadores familiares" (roughly, family
carers) because the term family caregiver indicates
paid caregiver rather than (usually unpaid) family
caregiver.

 

(2) Health care systems train staff on the cultural norms
of populations in their service area. One system that
serves a large refugee population provides training
modules for all employees to increase general
awareness of the culture and historical trauma noting
particular sensitivities, especially those that can
directly affect care delivery. This helps staff
communicate with family caregivers appropriately
and use content that resonates with the cultural
orientation of that community.

 

(3) Hospitals create printed, audio, and video learning
resources in multiple languages and provide extensive
translation services for family caregivers, some of
which can also add cultural context. They do not rely
on other family members to do the translation as
many health care terms are not familiar in vernacular
language and require the skills of a medical translator
to convey with accuracy and placing family in the
position of translator can pose a conflict in regards to
privacy. They also use the teach-back instructional
method for educating family caregivers about
medical/nursing tasks they will be performing at
home. In this approach, as staff provide care, they

explain to family caregivers what they are doing and
why they are doing it in that particular way. They offer
family caregivers opportunities to restate the same
information in their own words, in their own language,
to be certain the family member or friend understands
and feels confident about performing the task at
home after discharge. Family caregivers have the
opportunity to perform a task and receive feedback
and reinforcement as they practice.

 

(4) One hospital created a Latino community council by
partnering with 20 individuals from local community
organizations that serve the large Latino community.
Changes include installing bilingual welcome signage,
offering multiple language options on the hospital's
website, and having bilingual staff members wear a
button that says (in Spanish) "I speak Spanish."

 

(5) Another hospital serves an area where many
residents are seasonal agricultural workers who
collectively speak 14 different dialects of a language
that is only spoken, not written. Hospital staff rely on
a very limited number of local translators. They also
partner with "promotores de salud" (lay community
health workers who are part of a local indigenous or
Spanish-speaking culture), who foster relationships
with community members to build trust in the health
care system and encourage them to acknowledge and
accept the help they need. Promotores help
individuals and families overcome the ingrained
cultural norm that family caregiving is simply a
difficult part of life that must be endured. Promotores
also address the cultural assumption that only women
will handle caregiving responsibilities.

 

(6) Staff at one hospital noted that family caregivers who
are Spanish speaking often are much more involved
than English speakers in the patient's care. The
expectations that family caregivers have about their
involvement are important considerations for hospital
staff to understand as they engage and support
family caregivers.

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

How hospitals support caregivers of people with
specific health conditions

Diagnoses such as dementia, cancer, heart disease, and
brain injury require family caregivers to have specialized
knowledge and skill to provide safe medical/nursing care
at home after discharge. As a result, hospitals proactively
focus on providing family caregiver guidance and
instruction related to specific health conditions.

 

(7) Hospital staff provide education on disease
progression and support for family caregivers
managing an array of medical/nursing tasks that
can include administering medications such as pills,
suppositories, and injections and handling equipment
such as feeding tubes, catheters, blood glucose
meters, and ventilators.

 

(8) Interdisciplinary staff, including physicians, nurses,
pharmacists, and physical therapists, provide
information on prevention and management of
condition-specific risks and medication side effects,
such as those that can lead to instability and falls.

 

(9) Some hospitals create their own printed and online
learning resources for family caregivers who
manage a particular condition, such as congestive
heart failure.

 

(10) People undergoing complex surgeries such as organ
transplants need multiple skilled family caregivers to
provide care at home. One hospital requires these
family caregivers to commit to receiving detailed
instruction over an extended period to prepare for
safe discharge. The family caregiver and person
receiving care must live in the vicinity of the hospital
for at least three months because of the complicated
nature of recovery and the complex devices used
during the recovery process.

How hospitals support caregivers managing
multiple or complex medications

 

(11) Hospitals teach family caregivers-especially
those dealing with a high-risk situation-about the
medications they will be managing after discharge.

Practices that support family caregivers managing
medications include:

e Helping family caregivers find medications at
affordable prices;

e Encouraging family caregivers to practice giving
medications that are challenging to administer in the
hospital with supervision before discharge;

e Supplying medication in the hospital to take home
or providing prescriptions to fill before discharge so
the family caregiver does not need to leave the care
recipient at home to pick up medications;

e Conducting medication reconciliations during multiple
transitions to compare medications taken before
and during the hospital stay with those to be taken
at home after discharge-to account for differences,
duplications, and gaps;

e Hiring dedicated pharmacists to educate family
caregivers before discharge about medication risks,
side effects, interactions, management, and barriers
to compliance, especially when the care recipient
takes a large number of medications;

e Enabling hospital pharmacists to coordinate with the
family caregiver's local retail pharmacist;

e Making follow-up phone calls to the home after
discharge from the hospital;

e Setting up primary care follow-up appointments
that focus on discharge instructions and medication
management;

e Adding to the EHR a list of medications older adults
should potentially avoid; and

e Creating and sharing educational materials on
frequently used medications.

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

How hospitals support caregivers of people who
are older

 

(12) Many hospitals proactively help family caregivers
address common aspects of caring for an older
adult, such as dementia, delirium, polypharmacy,
medication toxicity, frailty, palliative care, hospice,
and end-of-life planning. Hospital staff recognize
that family caregivers of a person with dementia
may need more education, empathy, care, and
attention because of the particular challenges of
their responsibilities. Hospitals are expanding their
understanding of who could be a family caregiver,
recognizing that the person providing support at
home could be a neighbor or a friend-especially
for older adults. Ten percent of family caregivers of
adults provide care to a friend or neighbor.*°

One large health care system has a small family
caregiver support team that receives internal referrals
by phone or email for care recipients or community
members who are 65 or older. Posters in the hospital
advertise this family caregiver support and provide
contact information to be used by professionals

and family caregivers. To scale the internal referral
process, the health system is developing a referral
button in its EHR that triggers the involvement of the
caregiver initiative team.

How hospitals support caregivers of people
receiving palliative care

 

(8) Some hospitals have robust palliative care programs
that provide focused symptom management for
people with chronic or life-limiting conditions. Staff
routinely work with these individuals and their family
caregivers to help them create legal documents such
as advance directives, health care proxies, do-not-
resuscitate and do-not-intubate (DNR/DNI) forms,
and provider orders for life-sustaining treatment
(POLSTs}. The documents provide a way to share the
understanding of an individual's goals, values, fears,
and preferences with family caregivers and clinicians,
which facilitates decision-making at critical junctures.

 

4 Some integrated health systems provide palliative
care across the care continuum, including
rehabilitative, ambulatory, and home-based care.
They conduct family care conferences to enable
consistent support and smooth transitions-to ensure
that at every step of care, family caregivers are
prepared for how to handle care, what to look
for, and when to call for help or more information.

 

(5) One health system offers family caregiver classes in
the community where nurses and physical therapists
at teaching stations give live demonstrations and
answer questions. Other health care systems partner
with community-based organizations to achieve
similar results.

 

(16) Palliative care teams begin detailed discharge
planning early. At one hospital, where about 80
percent of palliative care patients go home with
hospice, staff prepare family caregivers to manage
end-of-life care and refer them to hospice services.

How hospitals support caregivers of people with
vision and hearing impairments

 

(7) Hospitals routinely facilitate communication for care
recipients and family caregivers with vision or hearing
impairments through the use of in-person, audio, and
video remote interpreting.

How hospitals support caregivers of people with
differing learning styles and abilities

 

(18) Because different learning styles and abilities can
influence the effectiveness of teaching materials,
hospitals assess the preferences and needs of family
caregivers and provide information in various formats,
including print, video, and audio. As they develop
their resources, they consider that family caregivers
with low incomes may have difficulty accessing online
videos and those with low literacy can struggle to
read instructions and develop materials accordingly.

 
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

How hospitals address barriers to effective care
after discharge

 

(9) Hospital staff conduct formal or informal family
caregiving readiness assessments to screen for
barriers related to willingness, ability, transportation,
literacy, health literacy, finances, and social
determinants of health such as living arrangements,
employment, and food security. Recognizing barriers
helps staff understand which community resources to
recommend and where gaps in family caregiver
support exist.

Hospitals then collaborate with community outreach
organizations to put services in place that help family
caregivers overcome an array of hurdles that prevent
them from accessing and paying for needed care.

Responses to COVID-19

 

@) A collaborative of hospitals, a local philanthropic
foundation, and more than two dozen social sector
organizations revealed two divergent responses from
older family caregivers resulting from COVID-19
hospital visitor restrictions. Some family caregivers did
not seek any respite or health care for themselves;
others quickly reached out to the local Area Agency on
Aging, which experienced a significant increase in calls
asking for referrals for help. The network responded by
raising funds to deliver food and offer support to
more than 1,000 isolated older family caregivers who
did not qualify for state-funded meal programs.

This response was in addition to the organizations'
work across the entire continuum of care to integrate
the family caregiver into the care team, provide
respite-especially to give older family caregivers
opportunities to take care of their own health-and
reduce readmissions for care recipients. Supports
across the network include a family care support
program embedded in a hospital transitional care
team, a caregiver resource center located in a
hospital, and assistance for families caring for
someone with dementia.

 

(21) After recognizing the increased isolation experienced

by Latino older adult family caregivers during the
COVID-19 pandemic, one health care system used its
outreach network to deliver Valentine's Day care
packages of groceries, medications, incontinence
supplies, and more. The hospital is turning what
started as a project into a permanent program. Staff
also focus more on helping these family caregivers
manage their own health.

 

10
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

 

The Effects of Unrecognized
Cultural Norms: A Vignette

The example below illustrates how unaddressed cultural
differences can affect safe postdischarge care. The
promising practices shared in this paper can help
hospital leaders address those differences.
€s) type 2 diabetes that he and his son, Alberto,
struggle to control. Because their urban
neighborhood stores often lack nutritious foods such as
fresh fruit and vegetables, they have difficulty managing
José's weight and diet. During José's hospitalization for
an amputation, Alberto's visits are infrequent and short
because the hospital is two bus rides from the apartment
they share, and Alberto has three children and a job with
long hours. As a result, Alberto rarely has an opportunity
to talk with his father's nurses or doctors. José's primary
language is Spanish, and his proficiency with English is
limited, so the health information José can remember
and report to Alberto is often incomplete. And because

José does not want Alberto to worry, José purposely
does not share some information.

Example: José is a widower with dementia and

Like many Latino men, José had put off health care for
years because of cost, the lack of Spanish-speaking
physicians and nurses, and fear of encountering
culturally insensitive remarks and interventions such
as diet plans that don't include foods he typically eats.
Instead of seeing a primary care provider, José goes to
the emergency department when symptoms become
unbearable, and he uses alcoholic beverages for pain
relief in the meantime. José was unaware that he had
symptoms of diabetes.

Alberto had not noticed the signs of José's diabetes or
dementia until both conditions had progressed. Alberto
feels that he is simply taking care of an older family
member-as expected by Latino families even when the
situation is very difficult to manage. He is not aware that
support services exist and that José is eligible for them.
Even if offered an opportunity for no-cost mental health
support, José and Alberto would not consider getting
help because of perceived stigma around being seen as
ill or mentally unstable.

After discharge, José's wound becomes infected and
painful. Alberto is very concerned, but he is reluctant to
ask for help from the hospital for fear of appearing

weak or unable to take care of his family. When Alberto
finally decides he cannot put off calling any longer, he
has challenges finding a time when he is with José at
home so he can call and translate or wait for a callback.
/\ hospital. Alberto's family felt mortified that
they failed to take proper care of him, and

they feared backlash from extended family members.

Repercussions: José was readmitted to the

Alberto experienced even deeper anxiety and depression
about his caregiving responsibilities and the limits he

anticipates they will place on his life for years to come. He
does not understand his many conflicting feelings, such
as the pressure he feels from his community to care for
his father, his aversion to voicing complaints, and guilt.

José is no longer able to work in his construction job,

creating additional financial and emotional stress for the
whole family. Because Alberto sometimes needs to miss
work to care for his father, he worries that he will encounter
family responsibilities discrimination and lose his job, too.

rey Opportunity: Culturally informed clinicians
could arrange bedside teach-back sessions
in Spanish at a time when Alberto can attend
to help José and his family learn how to manage his
symptoms, wound, and medications. They could
introduce Alberto to a case manager or promotore de
salud (lay community health worker) who is a member
of the family's cultural community and understands the
relevant aspects of their culture and available community-
based resources and can determine eligibility for services.
José and Alberto could receive access to videos and
other materials that incorporate their cultural norms and
language in explanations about postdischarge care.
They could also receive details on support groups for
José's type of dementia and help Alberto become
comfortable attending them.

Gas

Alberto could be prepared to arrange for additional
postdischarge care for José, such as having a visiting
nurse at the house. Alberto could hear that it is
counterproductive to improving José's health and
mobility when Alberto does everything he can for
José throughout the day and that he should encourage
José to do whatever he can for himself. Alberto could
learn the early warning signs of complications, feel
empowered to take action, and respond appropriately
before a serious problem develops.

 

11
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

Quantifying the Benefits

Benefits of Integrating Family
Caregiver Support

For Staff

e Preventing discharge delays-Instructing family
caregivers helps hospital staff avoid discharge delays.
Staff can provide and reinforce information gradually
throughout the hospital stay rather than deliver large
quantities of information to distracted family caregivers
during the flurry of discharge activity. Staff can also
better coordinate discharge scheduling when family
caregivers understand the process and are prepared to
arrive at the hospital at the time of discharge.

e Streamlining staff communication with family
members-Primary family caregivers who receive complete
instruction and preparation can relay information to
other family members and friends, saving hospital staff
the time and energy spent repeating the same
information to multiple individuals.

e Taking advantage of the knowledge family
caregivers have about the person receiving care-
During live learning opportunities, family caregivers can
share relevant details about the patient's goals, values,
fears, preferences, and responses to treatment. That
information helps inform care plans. They can also bring
to the staff's attention subtle changes in the patient 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.

e Instructing the right person in postdischarge care-
By instructing 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

e Detecting complications early to prevent problems

that can lead to readmissions-Qualitative data indicate
that when staff thoroughly assess family caregivers and
fully prepare them for what to anticipate, discharged
patients may be less likely to have a complication at
home that interferes with their recovery or requires a
return trip to the hospital. When family caregivers
understand how to identify a potential complication
early, they can seek help before the problem requires
treatment in the hospital setting.

e 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 address the impact of
caregiving on their own health and well-being. Good
preparation also gives care recipients confidence in the
family caregivers.

e Facilitating continuity of care-A designated primary

family caregiver with a good understanding of the care
he or she 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 or--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. It can also prevent
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
arrange for adequate instruction, supplies, and
equipment necessary to manage medical/nursing tasks

 

12
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

at home and any further help that may be required. Staff
can provide referrals to community resources that
support the plan for postdischarge care.

e 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.

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 of Tailoring Family Caregiver Support for Specific Populations

While guidance and support should be provided to all
family caregivers, tailoring information to meet the needs
of specific populations can pose challenges. Below are
four examples and how hospitals respond.

ee my
I
ie Resolution: Hospitals increasingly innovate to

provide instruction to support family caregivers.

To put supports in place during the hospital stay

and afterward, some health care systems develop close
working relationships or partnerships with community-

based organizations that focus on a specific populations
or conditions commonly seen in their organization.

Challenge: There are not enough resources to
provide the ideal level of support to every
family caregiver.

Challenge: For myriad reasons, family

te caregivers often cannot process information

| well in the hospital setting.
e Resolution: At some hospitals, prescribers

i increasingly write orders for home health care

so patients and family caregivers receive

skilled nursing instruction at home shortly

after discharge. Instruction can be more effective in a
calm, familiar setting after the peak of a health care
crisis. This path can be particularly helpful for patients
with Medicare and/or Medicaid, who may qualify to
receive skilled nursing support at home at no charge.

ee by Challenge: It is difficult to convince people
Tr who have a life-limiting condition to create
| advance care planning documents.

A Resolution: The palliative care team at one
hospital conducts family care conferences for
i the 80 percent of their patients who go home
with hospice. They also allow time for staff to
talk with families about creating documents such as
provider orders for life-sustaining treatment (POLST)
and do-not-resuscitate/do-not-intubate (DNR/DNI)
orders and advance directives to help the individual,
family members, and care team have a common
understanding of end-of-life wishes.
ee Ly
mi hospitals about how to manage care for people
with dementia.
e Resolution: One health care system partners
i with multiple community organizations that
focus on dementia. Social work staff developed
and launched a seminar on aging that was
open to the public. The traditional view of family is
changing to include neighbors and friends-especially

for older adults-so they also encourage attendance by
friends and neighbors of those with dementia.

Challenge: There is a significant lack of
awareness in the community and sometimes in

 

 

13
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

Additional Information
Implications of COVID-19

The COVID-19 (severe acute respiratory syndrome
coronavirus 2) pandemic has revealed the profound
importance of family presence on the health, well-being,
and recovery of individuals during a hospitalization.

Health systems recognize that strict visitor policies hamper
the ability of family caregivers to be part of the hospital
experience and available to support their family member
and participate in care. Health care leaders understand
that limited face-to-face interaction between hospital staff
and family caregivers hinders development of trust and
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.

The absence of family caregivers underscores how much
they contribute to day-to-day care in the hospital. Care
recipients are left with little of the crucial emotional
support family caregivers provide, resulting in loneliness
and other negative effects on their mental and physical
health. Front-line staff are left to manage the day-to-day
bedside tasks family caregivers often handle, such as
helping those with a high fall risk to the bathroom, assisting
with ambulation to prevent the loss of muscle mass, and
encouraging patients to eat and maintain hydration. Staff
also do not have the benefit of family caregivers alerting
them about increasing pain or changes in mental status,
which is especially important when the care recipient has
dementia or delirium.

The burdens of COVID-19 protocols and hospital staffing
shortages make it even harder for front-line staff to fill the
gaps left by family caregiver restrictions.

To address issues related to COVID-19, some health
systems do the following:

1. Change visitation policies to modify restrictions for
essential family members and end-of-life visits;

2. Modify in-person encounters to offer phone calls
during rounds, foster intentional in-person connections
during visits, increase home-visit safety, provide virtual
support groups, and coordinate out

3. Adapt staffing models to redeploy staff to the
busiest areas, particularly to focus on connecting with
family caregivers;

4, Use telephonic and video technologies (with training
and tech support) to enhance communication of
instruction on postdischarge care; and

5. Deepen community partnerships to mitigate strains
families face, such as food insecurity and financial
difficulty, that affect their ability to provide adequate,
safe postdischarge care.

The timely launch of the Supporting Family Caregivers
Providing Complex Care publication series highlights

a wide variety of additional promising practices in
family caregiver support just when they are most
urgently needed.

Inclusion of Diverse Caregivers in
Program Design

A recent collaboration of the AARP Public Policy Institute,
the University of California Davis Family Caregiving
Institute, the Benjamin Rose Institute on Aging, and the
Diverse Elders Coalition reveals the power of consulting
with family caregivers from diverse backgrounds in
understanding the meaning of research findings and in
hearing their priorities for program and service design.

The family caregivers reiterated the importance of
recognizing that while some caregiving experiences are
common across groups, the meaning of caregiver
experiences varies. It is shaped by both historical and
cultural context and the intersection of numerous factors
including age, gender identity, race/ethnicity, sexual
orientation, immigrant status, and more.

Multicultural family caregivers experience significant
socioeconomic inequality, racial discrimination, and
intergenerational trauma."* With the diversification of older
Americans, these inequities will only increase."' By 2030,
almost 30 percent of older adults will identify as a person
of color and/or an American Indian/Alaska Native; the
number of older Americans who are lesbian, gay, bisexual,
and transgender (LGBT) will double in size and include at
least four million people.*°

Recommendations from a series of three convenings to
discuss in depth the topic of designing programs to support
diverse caregivers can be found at https://journals.healio.
com/doi/10.3928/00989134-20210806-02.

 

14
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

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 patients 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 us, please

email homealonealliance@aarp.org.

Free Video Demonstrations of Medical/Nursing Tasks
for Family Caregivers

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 managing incontinence. These resources,
many of which are available in both English and Spanish, are

free of charge to all. Visit www.aarp.org /nolongeralone.

Education and Tools for Professionals, Clinicians, and
Policy Makers

Health care leaders can find an array of resources and
publications to help them integrate family caregivers into the

care experience at www.aarp.org /healthcareprofessionals.

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 (A/N) publishes award-

winning evidence-based, peer-reviewed articles and videos
that teach clinicians how to best support family caregivers.
AIN 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.

Theme Papers in This Series

© Staff Training Practices to Improve Patient and Family
Engagement: 16 Ways to Include Family Caregivers and
Prevent Discharge Delays (PDF)

e Learning Resources and Practices to Improve Patient
and Family Engagement: 12 Ways to Facilitate Family
Caregiver Education in Hospitals (PDF)

® Communication Practices to Improve Patient and Family
Engagement: 10 Ways to Identify and Engage Family
Caregivers in Hospitals (PDF)

e Screening Practices to Improve Patient and Family
Engagement: 5 Ways Hospitals Prioritize Family
Caregivers Who Need Extra Support (PDF)

e Benefits of the Caregiver Advise, Record, Enable (CARE)
Act: 4 Perspectives on Enhancing Patient and Family
Engagement in Hospitals (PDF)

Additional 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://www.aarp.org/politics-society/advocac
caregiving-advocacy/info-2014/aarp-creates-model-
state-bill.html. To learn more about the Home Alone

Alliance, visit www.aarp.org /nolongeralone.

 

15
Addressing Needs of Specific Populations to Improve Patient and Family Engagement

 

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

e Rita B. Choula, MA, Director, Caregiving, AARP Public
Policy Institute. rchoula@aarp.org; @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

' Heather M. Young, et al., Socia/ Determinants of Health:
Underreported Heterogeneity in Systematic Reviews of Caregiver
Interventions in Gerontologist, 2020, Vol. 60, No. $1, $14-S28
doi:10.1093/geront/gnz148.

2.3 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

4-6 National Alliance for Caregiving (NAC) and AARP, Caregiving in the
U.S. 2020 (Washington, DC: NAC and Washington, DC: AARP, May
2020), https: .

7® Susan C. Reinhard et al., Home Alone Revisited.

 

*-"' National Alliance for Caregiving (NAC) and AARP, Caregiving in the
U.S. 2020.

12-18 Susan C. Reinhard et al., Home Alone Revisited.

'6 National Alliance for Caregiving (NAC) and AARP, Caregiving in the
U.S. 2020.

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

18-26 National Alliance for Caregiving (NAC) and AARP, Caregiving in the
U.S. 2020.

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

78 https: //www.diverseelders.org/2021/03/31/connecting-with-
community/.

29,30 https://www.diverseelders.org /what-we-do/current-campaigns/
family-caregiving/.

30,31 Susan C. Reinhard et al., Home Alone Revisited.

32,33 Susan C. Reinhard et al., Tae CARE Act implementation: Progress

and Promise (Washington, DC: AARP Public Policy Institute, 2019),
aarp.or. i/info-2017/from-home-alone-to-the-care-act. html.

Supporting Family Caregivers Providing Complex Care
Theme Paper #1009, November 2021
© AARP PUBLIC POLICY INSTITUTE
601 E Street, NW
Washington, DC 20049

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Fj Follow us on Facebook

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

~AARP

Home Alone Al

 

iance'

a collaborative from AARP

 

16