Background and Objectives: As our population continues to age and experience chronic conditions, family caregivers become increasingly critical to our long-term care system. The Caregiver Advise, Record, and Enable (CARE) Act was designed to support caregivers and care recipients. To date, no direct guidance has been provided to healthcare systems on how to best implement the law. The objective of this study was to describe how a large healthcare system is acting on what was learned from the CARE Act implementation study.
Research Design and Methods: We conducted a follow-up cross-sectional questionnaire that expands on a larger mixed methods CARE Act implementation study (Blinded for Review). The questionnaire was developed based on the Plan-Do-Study-Act (PDSA) Cycle. Responses were analyzed using a directed content approach.
Results: Responses indicate the need to restart the PDSA Cycle. Plans for improving implementation were informed by three key lessons
a. collaboration can have unexpected benefits
b. broaden communication and instruction methods
c. adapt coordination processes
Discussion and Implications: Healthcare systems that plan to or are in the process of implementing the CARE Act would benefit from partnerships, multiple communication channels, and standardizing workflow and documentation. These findings can help other healthcare systems shape models of care that aspire to include family caregivers in hospital care.
Translational Significance: Lessons learned from a large academic medical center on systematic collaboration, communication, and coordination are shared to help health systems and providers improve their systematic inclusion of family caregivers in routine care.
As our population continues to age and experience more chronic conditions, family caregivers become increasingly critical to our long-term care system and achievement of the Triple Aim . The AARP recognized the need to improve caregiver support and has championed passage of the Caregiver Advise, Record, and Enable (CARE) Act. These state laws require hospitals to
a.provide patients the opportunity to identify and record the name of a caregiver
b.inform the caregiver when discharge is to occur
c.provide the caregiver with instruction of medical tasks to be performed in the home .
Only five years after this healthcare policy was introduced, nearly 40 states have enacted the CARE Act. This shift towards family-centered care signifies not only the important role caregivers play in the daily lives of their loved ones, but also in helping health systems achieve the Triple Aim. Despite the
enactment of the CARE Act across the United States, no guidance has been provided to hospital systems on how to best implement the law’s primary components.
Implementation and translational science have encouraged partnership models to overcome policy constraints . Evidence suggests that healthcare improvements can occur more rapidly within a supportive, collaborative context designed to share information . In addition to enhancing communication efforts, collaborative partnerships excel when they encompass diverse members with complementary skills . Likewise, the success of the implemented innovation depends on the quality of the health system’s leadership. Visible administrative and clinical leadership helps to reinforce essential support of the policy . Based on this information, several factors may contribute to improvement in implementation; however, little is known about the strategies that hospital systems are using to encourage use of the CARE Act tenets.
Best practices in implementation science and the Plan-Do-
Study-Act (PDSA) Cycle  give us the structure to examine uptake
of the CARE Act following its 2016 passing in the Commonwealth
of Pennsylvania. For the present study, we referred to the final
step of the Plan-PDSA Cycle. We chose to focus on this quality
improvement model step to help advance knowledge and improve
application of the CARE Act. Accordingly, the following research
question was asked:
What modifications were identified as needing attention to
improve CARE Act implementation?
We conducted a follow-up cross-sectional questionnaire to
expand on the larger mixed methods CARE Act implementation
study that had been previously reported (Blinded for Review).
Approval from the academic medical center’s Quality Improvement
Review Board was obtained prior to collecting and analyzing data.
Prior to developing a questionnaire, the first two authors
met and reviewed step four of the PDSA Cycle to guide item
construction (see Appendix for questionnaire). Open-ended
items concentrated on exploring what lessons were learned from
the CARE Act implementation study and strategies for making
improvements. Once these items were finalized, the first author
invited a member of the implementation study team, the Director
of Patient Education and Shared Decision Making, via email to
complete the questionnaire within the month.
Questionnaire responses were saved as a Microsoft Word
document for directed content analysis . The first author
mapped qualitative data onto the two courses of action proposed
in step four of the PDSA Cycle: restart the cycle at the planning
phase or discontinue the plan. For this brief report, we used the
strategies of peer-debriefing and member-checking. Weekly peerdebriefings
 were held among the first two authors to reach
consensus and ensure consistent interpretation of the data.
Responses reported from the Director indicate plans to
restart the PDSA Cycle. Plans for modification to improve the
implementation of the CARE Act into the large academic medical
center were informed by three
Lesson 1: Collaboration can have unexpected benefits.
We [academic medical center] are collecting data now at
each hospital (30+) to have more scientific rigor to evaluating
caregiver involvement. Working as a collaborative team that
includes researchers has taught me personally how important it
is to evaluate new processes in a scientific manner. Each hospital
is reviewing documentation of 20 patients monthly to identify
trends in CARE Act compliance.
We also identified additional stakeholders- local patient
education champions. We knew it was important to have executive
champions to launch the CARE Act from each impacted area
(e.g., nursing, eRecord, admissions, care management) but once
implemented, we learned it was more important to have the local
patient education champions responsible for spreading the new
procedures in their unit.
Lesson 2: Broaden communication and instruction methods.
Communication is challenging in large health systems so
many methods must be used. Broad communication such as
email/newsletters mixed with local unit-based champions that
communicate via staff meetings or unit bulletin boards. It is
critical to include “why” the Act is important; Compliance might
be higher if staff knew how essential a caregiver present having is
to patient outcomes.
We need to find ways to improve the instruction requirement
of the CARE Act. We think there is potential to offer patients
the opportunity to record the instruction delivery with their
smartphone. For instance, sending teaching videos directly to
patients and caregivers through email or text may help because
many tasks have a visual component. It is better to be able to
view tasks/skills again once home, especially prior to having to
Lesson 3: Adapt coordination processes
It is critical to integrate a second person [caregiver] at the
patient’s choosing and for that person to be present when the
patient receives important self-care information. Operationally, it
may be challenging to implement. We learned that staff include
family during teaching who happen to be visiting the patient.
But this may not be the designated caregiver who will help at
home. We have meetings planned to discuss how to modify the
documentation platform so that it reinforces the value of educating
the person who was identified on admission prior to discharge.
Our primary focus was to describe the lessons learned from
a large academic medical center and future action to improve
the CARE Act implementation. Systematic collaboration,
communication, and coordination emerged as essential strategies.
Our study draws attention to the unique contributions
of researchers, healthcare practitioners and administrators
to positively influence implementation of laws like the CARE
Act. Uniting the perspectives of these diverse members with
complementary skills evokes “successful implementation
and long-term sustainability” . Gainforth, Latimer-Cheung,
Athanasopoulos, Moore, and Ginis demonstrate that this type of
partnership contributes to knowledge mobilization, or the “act of
moving research results into the hands of research users” (p.1).
Knowledge mobilization is important because it helps ensure that
public policies in healthcare are evidence-based and accessible
 noted that very few studies have elaborated on the process
of building knowledge translation. While completing the PDSA
Cycle, our team recognized the value of including local patient
education champions to help “circulate information, encourage
peers to adopt the innovation, arrange demonstrations, and orient
staff to the innovation” . Future research is needed to explore
the specific strategies local patient education champions use to
facilitate knowledge mobilization in various contexts.
Our findings underscored the use of multiple interpersonal
communication channels in influencing the uptake of the CARE Act
components. In particular, the Director noted that teaching videos
coupled with other communication strategies would improve
CARE Act compliance as well as care delivery. This finding is
consistent with work by  that shared that interactive education
and mass media together, promote positive behavior changes,
such as practitioners providing instruction to caregivers prior
to discharge, and caregivers fulfilling care responsibilities postdischarge.
Future research is needed to examine the effect of these
distinct communication channels on the Triple Aim components.
No other studies have examined the systematic workflow and
documentation challenges associated with the CARE Act, but these
challenges have been reported in other healthcare improvement
projects [10,11]. Hospitals have historically provided care in a
patient-centered manner, which may impede the integration of
caregivers into workflow and discharge planning. Many prominent
organizations, including the Institute of Medicine and the Institute
for Healthcare Improvement, are endorsing a patient and familycentered
model of geriatric hospital care [12,13]. Future research
can build on our findings by developing and evaluating potential
solutions to improve the workflow and documentation challenges
that limit caregiver inclusion.
A strength of this study is the use of professionals with a
variety of areas of expertise, as well as iterative planning and
management for the successful use of the PDSA Cycle in helping
shape the culture of the academic medical center. Despite these
strengths, limitations exist. The small sample represents one
director from the academic medical center. We did not include
other directors primarily because they had a less significant role
in the CARE Act implementation process.
This brief report represents actions that an academic medical
center is taking in pursuit of more systematic caregiver inclusion in
hospital care. Healthcare systems that plan to or are in the process
of implementing the CARE Act would benefit from partnerships,
multiple communication channels, and standardizing workflow
and documentation. Simultaneously pursuing these system
components are necessary for fulfillment of the Triple Aim.