Nursing Research: Bringing Science to Life

Hello and welcome. I am Dr. Patricia Grady, Director of the
National Institute of Nursing Research at the National Institutes of Health and it’s my
pleasure to provide you an overview of the National Institute of Nursing Research. This presentation will provide you with
information about the important role the National Institute of Nursing
Research or NINR plays in advancing health. NINR occupies a unique position
within the National Institutes of Health, with a focus on research to
advance clinical practice. I will start by setting the context for how
the National Institute of Nursing Research, or NINR, fits within the NIH; I’ll then
provide some background on NINR’s history, mission, and strategic plan; I’ll
describe NINR’s research and leadership, and our commitment to
lifelong learning and training; finally, I’ll share with you our vision
of the future and plans for moving nursing science forward. The National Institutes of Health, or NIH,
is the premiere health research entity in the United States. The NIH mission is to seek fundamental
knowledge about the nature and behavior of living systems and the application
of that knowledge to enhance health, lengthen life, and reduce
illness and disability. The NINR is one of 27 Institutes
and Centers that comprise the NIH. Each Institute or Center has its own
mission and specific research agenda, typically focused around a particular
disease or group of related diseases – like the National Cancer
Institute or the National Heart, Lung and Blood Institute. NINR is unique among the NIH Institutes and
I’ll provide some specific examples of the ways in which NINR’s research agenda is
different from the other Institutes and Centers at the NIH. Before I talk about our
research agenda, though, let me give you a brief overview of
NINR’s history as shown on this timeline. Congress authorized the creation of the
National Center for Nursing Research at NIH in 1985. In 1993, the National Center for Nursing
Research became the National Institute of Nursing Research through legislation. The impetus for creating the
Center, and later the Institute, came from the findings of two studies. The first was a 1983 report by the Institute
of Medicine that recommended that nursing research be included in the mainstream
of biomedical and behavioral science. The second was a 1984 NIH Task Force
study that determined that nursing research activities are directly
relevant to the NIH mission. I have had the good fortune of
being the Director of NINR since 1995. During that time, the NINR budget has more
than doubled and there has been a significant increase in the number of research and
training grants awarded by the Institute. Since our inception we have emphasized
developing an evidence base for care and translating research advances
into tangible health outcomes. The mission of NINR is to promote
and improve the health of individuals, families, and communities. We accomplish this mission by
supporting and facilitating research; collaborating with colleagues across the
NIH and with public and private organizations that are
aligned with our mission. Nursing science occupies a unique
and significant place within the NIH community – that is guiding the
nation’s nursing science research agenda, with a focus on the science of health. This focus sets NINR apart from
other NIH Institutes and Centers. The science of health
includes, but is not limited to, research that covers the
lifespan through the end of life; encompasses the spectrum of care
settings; and includes the individual, the family and the community. NINR is implementing its Strategic Plan with
an emphasis on four scientific focus areas: Symptom Science – promoting
personalized health strategies; Wellness – promoting health
and preventing illness; Self-Management – improving quality of
life for individuals with chronic illness, and End-of-Life and Palliative
Care – the science of compassion. NINR also promotes technological innovation
and the training of the next generation of nurse scientists, both of which cut
across our scientific focus areas. NINR sponsors a variety of activities and
projects that foster nursing research and leadership. NINR-supported research directly
impacts health and influences care. Let me provide some examples of research
outcomes from each of our scientific focus areas. NINR’s symptom science
portfolio covers the lifespan, including neonates. Newborns in the neonatal intensive care unit
often experience some painful procedures in the course of monitoring and treatment. Studies show neonates
are able to perceive pain. However, if the newborns are not
clearly expressing signs of pain, caregivers rely solely on the newborn’s
alertness and their ability to react to painful experiences. With NINR support, Dr. Danilyn Angeles from
Loma Linda University measured biochemical reactions to pain from skin tape removal. Dr. Angeles and her colleagues identified an
elevated plasma indicator of pain upon tape removal in these newborns
compared to that of the control group. This biochemical method provides an objective
and accurate way to measure the presence and degree of pain felt by newborns and may allow
providers to optimize pain relief treatment for neonates. Another example of symptom science is
the characterization of symptom clusters. Symptom clusters are symptoms that
occur together and are interrelated. The characterization of clusters of symptoms
is being pursued by several research teams with the idea that treatments designed
for groups of symptoms may provide better outcomes than targeting
individual symptoms themselves. In this study of patients with breast cancer,
NINR-supported nurse scientist Dr. Andrea Barsevick analyzed changes in a cluster of
five symptoms over the course of treatment (cognitive disturbance,
fatigue, insomnia, pain, and depressed mood.) The treatment
included chemotherapy and radiation therapy. These symptoms varied in
intensity across the treatment course. Understanding the psychological and
biological mechanisms contributing to these symptom patterns can guide clinicians in
the development of personalized treatment interventions and can
improve patient outcomes. An example from the scientific focus area of
wellness is the work of Dr. Deborah Gross and her colleagues. These investigators recognized an unmet need
for high-quality early childcare programs that promote health in communities
with high levels of poverty. With NINR support, Dr.
Gross designed, tested, and further refiined the
innovative “Chicago Parent Program, in partnership with parents of young
children in low-income communities. The program successfully promoted healthy
behaviors and reduced risky behaviors among young children and their families. Today, the Chicago Parent Program is being
delivered in 16 states and in Head-Start programs in Chicago,
Baltimore, and New York City. Dr. Gross and her colleagues have continued
this work at Johns Hopkins University having conducted training
programs for over 200 teachers, health professionals,
community workers, and parents. Another example of the impact of NINR-funded
research is a series of Evidence-Based Interventions that advance
the science of wellness. Dr. Loretta Sweet Jemmott and her colleagues
at the University of Pennsylvania have reduced HIV/AIDS risk behaviors in diverse
populations of adolescents through their “Be Proud! Be Responsible!” and “Sister to Sister” programs. Partnering with
community-based organizations, including churches, clinics, and schools,
Dr. Jemmott and her team have effectively translated and disseminated her research
into prevention programs and her research has changed public policy related to HIV
risk reduction interventions in community settings. Adapting Dr. Jemmott’s work, a UCLA-based
team led by Dr. Deborah Koniak-Griffin developed an effective program addressing
HIV/AIDS and pregnancy risk behaviors in adolescent mothers, and later in HIV positive
couples seeking to have healthy pregnancies. This program uses unique community-based
participatory research methods to maximize utility, effectiveness, and dissemination. The “Cuidate!” program developed by Dr. Antonia
Villarruel also builds on Dr. Jemmott’s work, and focuses on adolescent Latinos. These programs are models for effective
community-based approaches to wellness interventions. In fact, the CDC has endorsed these
four NINR-funded programs as best evidence examples of rigorous, community-engaged
approaches to reduce rates of teen pregnancy and sexually transmitted diseases. Another scientific focus area is
self-management to improve quality of life. One example of NINR-supported self-management
research is the COPE TEEN program that was developed and tested by Dr. Bernadette Melnyk
at The Ohio State University College of Nursing. This school-based
intervention addresses obesity, social skills, and mental
health concerns in adolescents. The intervention includes education and
cognitive behavioral skills development, as well as a variety of physical activities. Teens showed improved health
behaviors and social skills, less depression, and better academic
performance at the end of the intervention program. The improved outcomes were also sustained six
months after completing the program with the COPE teens retaining a significantly
lower body mass index (BMI) and maintaining healthier weights relative to
control group participants. This program was presented by teachers as
part of the health education curricula in high school settings. Therefore, the COPE TEEN
intervention is a model of a feasible, cost-effective, and
sustainable self-management program. Today, COPE TEEN has been implemented in
several state schools at a minimal cost per student and has been adapted into a
freshman-level college course at The Ohio State University. A program for adults is
currently under development. Other NINR-funded Self-Management
program focus on: Surviving cancer, in which patients and their families are
assuming a greater role in managing follow-up care. Self-management may act as a
model of care where providers, patients, and families enter partnerships
to manage care across all aspects of cancer treatment. Living with diabetes, where self-management
requires patients to integrate numerous new activities into their daily life. Identification of obstacles
to diabetes self-management, such as literacy, is vital, especially
in diverse and vulnerable populations. Internet intervention programs are
being tested to reach teens with diabetes, allowing them to manage their health
more independently and improving outcomes. In addition, our researchers are contributing
to the science of self-management for other chronic conditions such as asthma,
arthritis, inflammatory bowel syndrome (IBS), and chronic obstructive
pulmonary disease (COPD). As the lead Institute for
end-of-life research at NIH, NINR supports research that explores
interventions to manage the symptoms of advanced illness and plan
for end-of-life decisions. Improving communication
between patients, family members, and health care professionals
is a critical area of study. At the University of Washington, Dr. J. Randall Curtis and his colleagues are
developing interventions to improve communication between family members and
health care professionals about palliative and end-of-life care. Dr. Curtis’s studies include the use of a
“communication facilitator” in the ICU to help clinicians meet
families’ needs for communication. He has also tested an educational
skills-building program to help clinicians improve their communication skills
during sensitive end-of-life situations. His work shows that factors such as length
of stay in the ICU affect family members’ satisfaction with care, that improving
communication about end-of-life care reduces stress, anxiety, and
depression in family members, and that better outcomes were associated
with physicians following standardized communication guidelines with family members. Another NINR-supported investigator, Dr.
Susan Hickman from Indiana University and the Oregon Health & Science University, has
focused on communicating patient wishes to health care professionals. The Physician Orders for
Life-Sustaining Treatment, or POLST, program consists of a standardized
form on which patient preferences are indicated for such measures as
cardiopulmonary resuscitation (CPR), pain relief, and tube feeding. She found that nursing facility residents
with POLST forms were less likely to receive unwanted life sustaining treatment
when compared to those with traditional do-not-resuscitate (DNR) orders. These findings underscore the importance of
identifying effective ways to communicate individual preferences for life-sustaining
care and can be implemented by health care professionals to help individuals make more
informed choices about the type and level of end-of-life care they prefer. NINR is also translating the science of
palliative and end-of-life care through a Pediatric Palliative Care Campaign and an
End-of-Life Module on the NIH Senior Health website, reflecting NINR’s
research efforts in this critical area, and our commitment to ensuring that our
research makes a difference to those in need. NINR’s Pediatric Palliative Care:
Conversations Matter campaign is raising awareness of and improving communication
about pediatric palliative care and aims to increase the use of palliative care for
children living with serious illnesses. To develop the campaign, NINR brought
together parents and palliative care clinicians, scientists, and professionals to
identify what was needed to improve the care of seriously ill children. The campaign offers materials designed to
help health care providers begin palliative care conversations with
pediatric patients and their families, following diagnosis and
throughout the illness, to meet their changing needs. The website conveys
health and wellness information for older adults and their caregivers,
including topics such as exercise, diet, long-term care, drugs and
management of common diseases. NINR developed a module for the senior
health website that addresses End-of-Life. The End-of-Life module
describes the physical, mental, and emotional needs of people nearing
the end of life and suggests ways to maintain quality of life, such as
hospice and home care. It also addresses the often complex
practical concerns that can attend death, including financial
issues, advance directives, caregiver support, and more. The End-of-Life module was described
in a New York Times blog as “candid and comprehensive…and
well-designed for older users”. Recognizing a major technology
gap in health care diagnostics, NINR’s investment in innovation is helping
technology to gain a larger role in health care. NINR provided support to Dr. Samuel Sia
and his colleagues for investigations into portable, point-of-care diagnostics. Through NINR’s small business
technology transfer program, an interdisciplinary team of investigators
at Columbia University developed and tested a portable, point-of-care, “lab-on-a-chip”
diagnostic device – the mChip. The mChip is designed to detect
HIV and associated co-infections, such as syphilis and herpes, which
significantly increase the transmission of HIV. Notably, the mChip requires

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