November 22, 2019

Research Rewind: Caregivers and Patient Centricity

Those providing unpaid care to loved ones (collectively called “caregivers”) are vital stakeholders in the ever-evolving ideology of patient-centric practice. Unfortunately, this group is heterogeneous and largely misunderstood—often painted with the same brush and afforded little dimension to who they are and what motivates their choices.

To truly understand caregivers and what lies beneath the surface in their experiences and perception, Syneos Health conducted an online survey in August 2018 with caregivers in the United States. The 1,380 respondents represented a convenience sample of online panel members who opted to participate.

This first body of work gathered an incredible wealth of knowledge, but we knew that it was merely one facet of the caregiver landscape. The next phase of research needed to build on what we were beginning to understand about the caregiving experience and further explore the dynamics of the caregiverpatient relationship. Specifically, we want to understand how caregivers use their experiences, attitudes and motivations to influence discrete aspects of the patient journey.

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2019 Methodology: An overview of the survey and the respondent pool
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Content 

WHO

The data from this report
come from a 40-minute online
survey conducted in the U.S.
in May 2019 with unpaid adult
caregivers of patients aged
18 years or older. Caregiving
was defined as providing
unpaid care to at least one
other adult, usually a relative
or a friend, to help them take
care of themselves due to
health challenges.

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HOW

Caregiver respondents were
recruited by a third-party panel
company. A soft quota was set
on gender so as to closely
approximate the gender
distribution of caregivers in the
U.S. population (60% female,
40% male). This quota is in
keeping with the gender
distribution found in the first
phase of research, as well as the
2015 AARP “Caregiving in the
US” survey and report
conducted by the National
Alliance for Caregiving and the
AARP Public Policy Institute.

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WHAT

Survey questions covered a
range of topics, including:

Patient Characteristics
(e.g., demographics, living
arrangements, health status,
health management needs
and current functioning)
 

Caregiver Characteristics
(e.g., demographics, physical
and mental health status,
self-care behaviors, and general
caregiving and healthcare
system attitudes/beliefs)
 

Caregiver Experiences
(both over time and currently)
 

Caregiving Behaviors
(e.g., everyday patient support,
interactions with HCPs,
treatment decision-making,
coordination with other
caregivers)

Remember those motivational styles from the first Caregiver report?

We brought Promoter/Preventer back. Within the survey is an 11-point bipolar rating scale, which was designed to assess the motivational orientation of the caregiver when it came to their caregiving role (“promoter,” “preventer” or various mixes
of the two). Of the 1,006 respondents who completed the survey, 612 selected a rating other than the scale midpoint, indicating that they were either predominantly promoter or predominantly preventer. These 612 respondents form the basis of this report.

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Caregiver Snapshot

A quick look at the must-know items about our caregiver population and the patient-caregiver relationship

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To read the full report download the PDF.
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