NIH / ADAPT Center Funded Research
Cognitive Status Changes among Stroke Patients Receiving Acute Rehabilitation
Project Director: Janet Prvu Bettger, ScD, FAHA

Stroke is the leading cause of long-term disability among adults in the United States. Two-thirds of patients experience alterations to their cognitive status from a stroke leading to increased risk for dementia and mortality. This retrospective study of a large cohort of stroke patients receiving inpatient rehabilitation is designed to address important knowledge gaps related to cognitive status changes that influence stroke rehabilitation outcomes.

Contribution to Symptom Science and Adaptive Leadership Framework
Describing the interaction between cognitive status and stroke sequelae during acute rehabilitation will identify opportunities for adaptive approaches that could lead to improved outcomes. The findings will have significant implications for addressing variations in care, training patients and families on post-stroke adaptive, self-management and secondary prevention strategies, and planning for discharge.

Mealtime Symptoms in Dementia: Adaptive Leadership Approaches
Project Director: Melissa Batchelor-Murphy, PhD, RN-BC, FNP-BC

Basic training programs do not adequately prepare nursing home staff to handle dementia-related mealtime symptoms. When persons with dementia (PWD) exhibit mealtime symptoms (e. g., turning away of the head, pushing food away), these symptoms may be interpreted as lack of interest in eating, and feeding attempts cease.

Contribution to Symptom Science and Adaptive Leadership Framework
This study will contribute knowledge about technical and adaptive approaches that nursing staff might use at mealtime with persons with dementia. We propose that receiving dementia feeding skills training that combines adaptive and technical approaches will increase feeding skill knowledge, self-efficacy; increase time spent providing feeding assistance; and demonstrate improved feeding assistance behaviors. Persons with dementia will benefit from these mealtime approaches with decreased aversive feeding behaviors and better meal intake during feeding assistance from nursing staff following the training program.

Physiologic Mechanisms in Pediatric Traumatic Brain Injury
Project Director: Karin Reuter-Rice, PhD, CPNP-AC, CCRN, FCCM, FAAN

Traumatic brain injury (TBI) is s the leading cause of death and disability in children and adolescents. Financial, personal, and societal costs of pediatric traumatic brain injury are immense, and the limited therapeutic interventions currently available make this an area of compelling clinical need. Understanding the role of genetics in pediatric TBI outcomes will allow the healthcare team to explore interventions that will enhance recovery.

Contribution to Symptom Science and Adaptive Leadership Framework
As part of the larger study examining gene associations and physiologic mechanisms in TBI, a synthesis and interpretation of day-to-day interactions of the child/family and healthcare team was performed. Identifying the most efficacious technical work of the healthcare team and the adaptive challenges of children and families will contribute to the Adaptive Leadership framework. This work will develop new knowledge, which will be used to evolve the adaptive leadership roles for nurses in facilitating child and family adaptive behaviors. Nurses and the healthcare team will then better understand how to work conjointly with children and families to monitor symptoms, assess challenges, and assign specific care-taking responsibilities. This will set the stage for developing new interventions that use adaptive approaches and will advance nursing practices.

Trajectory of Symptom Experiences Post-Ablation in Patients with Atrial Fibrillation
Project Director: Kathryn Wood, PhD, RN

Atrial Fibrillation (AF), affecting nearly three to five million Americans, is also a growing global health epidemic. Catheter ablation is a 99.9% effective, curative treatment for other cardiac arrhythmias, yet only moderately effective for AF. Improvement after catheter ablation for AF, if it occurs at all, is slow and gradual, and patients are prone to increased episodes of anxiety, fear, and depression during the recovery period.

Contribution to Symptom Science and Adaptive Leadership Framework
Providers often use technical solutions (medication and repeat ablations) to address emotional and physical symptoms post-ablation. However, patients also face adaptive challenges that sometimes go unrecognized. The Adaptive Leadership framework will be used to explore symptom trajectories post-ablation and identify the technical and adaptive challenges that patients with AF face. This study will contribute knowledge to understanding the adaptive challenges created by cognitive, emotional, and physiologic symptoms during the vulnerable six-month period after ablation. This knowledge will be useful for guiding intervention development to support patients in managing symptoms post-ablation, as well as provide more accurate information for healthcare professionals to use when explaining ablation treatment to patients. Furthermore, it will allow for better tailoring of patient education materials to provide realistic expectations and management strategies during recovery.

DUSON / ADAPT Center Funded Research
Adaptive Leadership for Person-Directed Care in Nursing Homes (7/1/15 - 6/30/16)
Pilot Investigator: Kirsten N. Corazzini, PhD, FGSA

Person-directed care in nursing homes aims to shift the focus of how we make decisions about care to consider the person as a whole, rather than as a set of functional limitations, and to place his or her values and preferences first. The purpose of this study is to identify and describe socio-cultural contextual factors of nursing practice that facilitate or inhibit person-directed care in nursing homes.

Contribution to Symptom Science and Adaptive Leadership
The project is applying the adaptive leadership framework to establish a theoretical and an operational framework for person-directed assessment and care planning in nursing homes in North Carolina. Specifically, the project is exploring adaptive challenges and adaptive work required of nursing staff to accomplish person-directed care in two countries, England and Sweden, which have made greater progress in implementing person-directed long-term care relative to the U.S. Findings will be compared to FLARE study NC-based sample data of nursing practice facilitators and barriers to person-directed care, to inform intervention development.

Feasibility Trial of use of Biomarker Feedback in Dual Smoker Couples (7/1/15 - 6/30/16) 
Pilot Investigator: Isaac Lipkus, PhD

Half or more of smokers partner with other smokers, which greatly reduces either person’s chances of quitting. Despite this, few cessation interventions have been created for dual smoking couples. Prior research has shown that biomarker feedback can increase individual smoker’s perceived risk and desire to quit. However, how this information effects risk perception, motivation, or smoking behavior when presented to dual smoking couples it is not known. This study is exploring feasibility issues of using an adaptive intervention approach based on biomarker feedback to a communal chronic health issue, smoking cessation.

Contribution to Symptom Science and Adaptive Leadership
The investigators are pilot testing an adaptive intervention that will require couples to work collaboratively to understand biomarker information and develop communal adaptive work strategies to address the challenge of smoking cessation.  

Understanding Adaptive Challenges Associated with Male-factor Infertility (7/1/15 - 6/30/16) 
Pilot Investigator: Eleanor L. Stevenson PhD, RN

Of couples experiencing infertility, a male factor cause is identified in 30-50% of cases. It is unclear how men diagnosed with male-factor infertility navigate the diagnosis and treatment process, and integrate this diagnosis into their daily lives. Because the diagnosis is often made when couples are having difficulty getting pregnant, developing adaptive behaviors to help them during the diagnosis and treatment phases might be challenging. Additionally, due to the highly technical nature of treatment, there can be significant adaptive challenges that go unrecognized.

Contribution to Symptom Science and Adaptive Leadership
This study is using the adaptive leadership framework to understand the experience of men and their partners when diagnosed with male-factor infertility while trying to achieve a pregnancy and the skills they use to adapt to this diagnosis.

Adaptive and Technical Challenges Associated with Use of Nursing Home Resident Monitoring Technology in Pressure Ulcer Prevention: A Pilot Study (7/1/15 - 6/30/16)
Pilot Investigators: Tracey L. Yap, PhD, RN and Susan Kennerly, PhD, RN

Prevention of pressure ulcers has proven difficult for U.S. nursing homes. The existing standard-of-care focuses on technical aspects of care by minimizing pressure exposure through frequent moving/repositioning residents. However, there have been concerns about the implementation of these interventions.  The LeafÒ Patient Monitoring System (FDA cleared, wireless, tri-axial accelerometer)  automates resident repositioning schedules, cueing staff to resident repositioning needs, and confirms and documents repositioning once performed.  This study is 1) examining how effectively the LeafÒ System monitoring determines repositioning needs of NH residents in order to prevent pressure ulcer development, and 2) describing how staff perceive using this technology for repositioning intervals and identify challenges to its implementation.

Contribution to Symptom Science and Adaptive Leadership 
This project applies the Adaptive Leadership framework as a lens to enable collaboration and adaptive processes between staff to facilitate resident repositioning regimens. We use Leaf® Healthcare technology to allow staff to forgo technical challenges of reaching residents in a timely manner, records repositioning care when it is actually delivered, and expedite adaptive approaches to support residents in need of immediate repositioning.

Trajectory of Symptoms and Adaptive Challenges of Adults Living with Low Grade Gliomas (1/1/15 – 06/30/16)
Pilot Investigators: Mary Lou Affronti, DNP, RN, ANP, MHSc and Susan M. Schneider, PhD, RN, FAAN

Glioblastoma is the most common and lethal type of brain tumors. While much attention is given to this highly aggressive grade glioma, less is known about the adaptability of a patient with low grade or slow growing gliomas, where patients survive longer but with significant deficits. Adults with low grade gliomas experience a range of distressing symptoms, such as fatigue, pain, seizures, and cognitive changes; that persist for many months to years, increase the need for medical intervention, and negatively impact the quality of life. The key problematic aspect of the symptom experience is the challenges that result from these symptoms, including challenges to the individuals and family’s ability to cope, recuperate, resume activities of daily living, and vocational goals. The trajectory of symptoms for adults living with low grade glioma is not well documented. Further, the particular adaptive challenges associated with these symptoms are not known.

Contribution to Symptom Science and Adaptive Leadership
The study aims to describe the patterns in trajectory of symptoms during months 2,4, and 6 post diagnosis, identify and describe the technical and adaptive challenges and adaptive work across the trajectory of symptoms during the first 6 months post diagnosis, and describe the relationship between patient characteristics and interpersonal relationships with symptom trajectory patterns, adaptive challenges and adaptive work among adults with low grade glioma. 

Implementing a Deliberate Practice Approach to Support Adaptive Dementia Care:  A Comparison study between the U.S. and China (1/1/15 - 12/30/16)
Pilot Investigator: Eleanor S. McConnell, PhD, RN, GCNS-BC

Adoption of adaptive cueing by staff providing care for individuals with dementia has been slow. Because adaptive cueing requires that staff implement specific cueing techniques in response to fluctuating levels of cognition, a key barrier to adoption may be lack of training models sufficient to reliably train large number s of staff in adaptive care. Deliberate practice is an evidence-based, systematic approach to psychomotor skills acquisition and retention that emphasizes distributed practice with expert feedback that holds promise as an approach to develop staff competency in adaptive care for individuals with dementia.

Contribution to Symptom Science and Adaptive Leadership
This study examines the feasibility of using deliberate practice to teach adaptive cueing for dementia care to master trainers in both the US and China, as a strategy for larger scale workforce development in dementia care. 

Establishing Inter-Rater Reliability for Video Coding of Hand-feeding Techniques for Persons with Dementia in the Nursing Home (1/1/14 - 12/30/14)
Pilot Investigator: Melissa Batchelor-Murphy, PhD, RN-BC, FNP-BC

In Nursing Homes (NHs) in the United States, malnutrition, dehydration, and weight loss remains one of the largest, silent epidemics. A major risk factor is cognitive impairment (dementia), and with approximately 65% of NH residents having some form of dementia, they often require assistance with feeding. Adverse outcomes can arise when persons with dementia demonstrate “aversive” feeding behaviors (e.g. clamping mouth shut or refusing to swallow). In the current long-term care system, NH staff are not adequately trained to handle feeding difficulties and often interpret dementia-related mealtime behaviors as “resistive”, and cease attempts at hand feeding.  

Contribution to Symptom Science and Adaptive Leadership
The investigator is comparing three different hand feeding techniques – Direct hand feeding, Over hand feeding, and Under hand feeding - as intervention(s) that might improve a resident’s meal intake. This study aims to establish inter-rater reliability of the video coding scheme used in the mealtime interaction analysis, where one of the three hand feeding techniques were used in preliminary data collection.  

The Adaptive Leadership Framework in Mobile Health: A Pilot Study for Weight Loss (1/1/14 - 12/30/14)
Pilot Investigator: Ryan J. Shaw, PhD, RN

Obesity is a serious condition affecting nearly 34% of Americans and is associated with multiple chronic diseases including type 2 diabetes, cancer, and cardiovascular illnesses. Due to the low cost and ubiquity of cell phones, healthcare communicated through mobile technology, mHealth, can be particularly useful for obesity management and weight loss. With the aid of mobile devices, we’re now able receive and send data on a daily and hourly basis, which allows for personalized health interventions in real time, regardless of geographic location. This immediate access to data may be especially helpful for the management of obesity, where behavior change is a daily, if not hourly, undertaking that involves multiple overlapping factors that may interact and shift in importance over time

Contribution to Symptom Science and Adaptive Leadership
The Adaptive Leadership framework will be used to help structure collaboration and adaptive processes between patients and clinicians to facilitate weight loss using mHealth. This study will use mHealth in a synergistic work relationship to further both the adaptive work of patients and the technical and adaptive approaches of clinicians. In this model, patients and their providers collaborate to monitor symptoms, assess challenges, and plan the work needed to help the patient meet their weight loss goals. mHealth allows providers to reach patients very quickly, wherever they are, and expedite adaptive approaches to support patients in real time--as weight loss behaviors and decisions actually occur.

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