Health Services Research Commons^™

Matters Of Trust: Examination Of The Patient-Provider Relationship In Cancer Care, Krista A. Brown

Capstone Experience: Master of Public Health

Background: The intangible concept of trust is critical in the patient-provider relationship. Cancer patients may experience positive and negative impacts of trust in this relationship to a higher degree due to the inherently serious nature of their disease and the level of dependence upon treatment providers.

Objective: The goal of this study was to compare colorectal cancer patients’ levels of trust in their primary care physician and oncologist, along with examining trust differences associated with demographics and other characteristics.

Methods: Colorectal cancer patients (n=158) treated at Nebraska Medicine and consented into the Integrated Cancer Repository for Cancer Research IRB …

An Exploration Of Barriers To Health Care Access Among Uninsured Patients: Using The Moderating Effect Of Patients’ Enablement, Enedelia L. Jessup

Electronic Theses and Dissertations

ABSTRACT On March 23, 2010, Congress passed the Patient Protection and Affordable Care Act (ACA) to increase value of care, improve clinical outcomes, decrease health care costs, and increase affordability in health care access. The purpose of the study attempts to examine the moderating effects of patient enablement impacting barriers, low socio economic status, and unmet basic needs, toward health care access in uninsured populations post ACA. Only certain aspects of patient enablement in self-management of an individual’s health care goals have been conducted with uninsured populations with barriers toward health care access. The research design was a quantitative, exploratory, …

Addressing Culturally Specific Mental Health Care Needs In The Us: The Asian American Population, Moira Lewerk

Honors Scholar Theses

As the fastest growing minority group in the US, Asian American health needs and disparities are becoming critical areas to address, particularly in the mental health domain (Leong, Park, & Kalibatseva, 2013). Currently, the culturally specific needs of this group are not being adequately met. This includes appropriately serving low English proficiency (LEP) patients who experience different healthcare quality and outcomes than other individuals. Additionally, recognizing culturally unique perspectives, emotional burdens, and immigrant experiences is crucial in developing culturally tailored mental health interventions and shifting mental health toward individualized care. This work aims to examine current policies surrounding culturally competent …

Use Of Urine Antigen Testing For Blastomyces In An Integrated Health System, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

Purpose: Blastomycosis, an endemic fungal infection, mimics many other diseases. We explored the use of Blastomyces urine antigen (BuAg), reportedly the most sensitive noninvasive test, in clinical practice and compared it to other noninvasive tests.

Methods: A total of 836 BuAg tests performed on unique patients (first test only) at one large integrated health system from June 2013 to May 2016 were retrospectively reviewed to examine test characteristics and demographic features. Of these, 100 cases from 2015, a year containing a large local blastomycosis outbreak, were randomly selected for detailed analysis.

Results: Demographics for the BuAg-tested population: mean age 54.9 …

'No Pink Ribbons': How Women's Lived Experiences With Breast Atypia Inform Decisions Involving Risk-Reducing Medications, Sarah L. Goff, Reva Kleppel, Grace Makari-Judson

Journal of Patient-Centered Research and Reviews

Purpose: Atypical hyperplasia (AH) is associated with a nearly 4-fold elevation of lifetime risk for breast cancer, and lobular carcinoma in situ (LCIS) is associated with a 7- to 8-fold risk. Women with AH/LCIS make numerous decisions in the course of treatment, including whether to take a risk-reducing medication, an option relatively few women pursue. We explored women’s decision-making processes through patient narratives in an effort to inform decision supports for AH/LCIS.

Methods: We conducted in-depth interviews with 20 English-speaking women with AH/LCIS and no subsequent diagnosis of invasive breast cancer who had enrolled in the Rays of Hope Center …

Uncertainty And Competing Priorities In Shared Clinical Decision-Making, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

In this issue introduction, the editor-in-chief of Journal of Patient-Centered Research and Reviews observes that a connecting thread among the articles published therein is an element of uncertainty among patients and clinicians. Competing priorities for the patient also may be present. Several approaches to overcoming these prevalent conflicts to delivery of better health care have been proposed, the most important of which may be clinicians embracing a will to practice shared decision-making.

Homeless And Marginally Housed Veteran Perspectives On Participating In A Photo-Elicitation Research Study, Keri L. Rodriguez, Daniel O. Hedayati, Lauren M. Broyles, Melissa E. Wieland, Michael A. Mitchell, James W. Conley, Shaddy K. Saba, Adam J. Gordon

Patient Experience Journal

Photo-elicitation interviewing (PEI) seems a valuable tool for engaging marginalized populations in research despite documented challenges. Given limited data on acceptability of PEI among homeless and marginally housed Veterans, this evaluation aimed to characterize their research experience. Veterans took photographs about health, health behaviors, and health care which facilitated semi-structured interviews. Their research study experience was assessed via a modified Reactions to Research Participation Questionnaire-Revised (RRPQ-R), along with additional survey and open-ended questions. Of the 20 participants who consented and participated, 16 (80%) completed the exit surveys. Most participants (>88%) indicated favorable experiences and limited drawbacks. Respondents disagreed that …

What Are The Most Important Dimensions Of Quality For Addiction And Mental Health Services From The Perspective Of Its Users?, Priscilla Liu, Shawn Currie, Jassandre Adamyk-Simpson

Patient Experience Journal

There is a need to better engage service users in improving their experience with the care received in Addiction and Mental Health (A&MH). Dimensions of patient experience that are most salient to A&MH service users still remain to be properly defined from the patient perspective. This research focuses on identifying key domains of service experience important to patients of Addiction and Mental Health using patient focus groups. In addition, through a patient and family advisory committee, patients were also engaged as co-partners of the research team. The patient advisors had a major role in overseeing the research project, assisting with …

Exploring Workforce Confidence And Patient Experiences: A Quantitative Analysis, Katie M. Owens, Stephanie Keller

Patient Experience Journal

Confidence is recognized as one of the most influential factors to affect performance. Individual, leader, and team confidence play essential roles in achieving success and the absence of confidence has been connected with failure. While confidence is not a substitute for competency, it creates trusting relationships, empowerment, and resiliency to persevere when challenges arise. Objective: In this study, we examined workforce confidence in the patient experience and patient perceptions of their experience of care. Methods: We compared responses to the Patient-Centered Excellence Survey (PCES) from 41 United States hospitals, measuring workforce confidence in the patient experience provided, to patient’s ratings …

Nursing Transfer Of Accountability At The Bedside: Partnering With Patients To Pilot A New Initiative In Ontario Community Hospitals, Kristina Ba Miller, Aden Hamza, Kateryna Metersky, Dianne M. Gaffney

Patient Experience Journal

The transfer of accountability (TOA) for a patient from one nurse to another at change of shift is an important opportunity to exchange essential patient care information, as well as to enhance the safety and quality of patient care. This study was undertaken to explore nurses’, patients’ and family members’ perceptions associated with the implementation of bedside nurse to nurse TOA. Focus groups were conducted pre-implementation (two with nurses and two with patients and family members) and post-implementation (six with nurses and two with patients and family members). The focus groups were audio-recorded, transcribed and analysed using directed content analysis. …

Family-Centered Caregiving From Hospital To Home: Coping With Trauma And Building Capacity With The Hope For Families Model, Anna Newcomb, L Gordon Moore, Holly C. Matto

Patient Experience Journal

Informal caregivers and families play a significant role in the recovery process of trauma survivors. However, the needs and outcomes of orthopedic caregiving family members in the months following traumatic injury have received almost no attention in the literature. Our study sought to understand the factors impacting orthopedic trauma families’ experience and their ability to cope and provide care post-acute hospitalization. Based on these findings, we designed a hospital-based program to enhance family coping and adjustment post-discharge. Caregivers (N=12) of patients with orthopedic trauma injury engaged in three in-depth semi-structured face-to-face interviews to identify their most salient concerns. Once home, …

How Patients View Their Contribution As Partners In The Enhancement Of Patient Safety In Clinical Care, Marie-Pascale Pomey, Nathalie Clavel, Ursulla Aho-Glele, Noemie Ferré, Paloma Fernandez-Mcauley

Patient Experience Journal

Despite the call from the World Health Organization for more active involvement from patients in the prevention of health care-related risks, there is still insufficient evidence about how patients can be more proactive in the safety of their own care. This study helps understand the perspective of patients as partners regarding their roles, as well as their relatively untapped potential in detecting and limiting adverse events (AEs) for patient safety. 17 patients-as-partners were interviewed on five themes: 1) Behavior of patients/relatives for avoiding AEs; 2) Competencies sought in patients/relatives to play an active role in patient safety; 3) Factors limiting …

The Patient Experience With Shared Decision-Making In Lung Cancer: A Survey Of Patients, Significant Others Or Care Givers, Laurie E. Gaspar, Howard J. West, Bonnie J. Addario, D Ross Camidge

Patient Experience Journal

A survey (via SurveyMonkey) was sent to lung cancer patients, their caregivers or significant others asking about their experience in making difficult treatment decisions. Of the 198 respondents, 118 (69%) indicated that they had faced a difficult decision with respect to their lung cancer treatment. Of those, 73% indicated that they would have desired that the decision be made with their physician using a shared decision-making process, and 58% perceived that such a process had occurred. In addition, only 23% of respondents indicated that they had had the right amount of information when making the decision. Fortunately, only 9% of …

Barriers And Facilitators To Family Participation In The Care Of Their Hospitalized Loved Ones, Lynda Bélanger, Marie Desmartis, Martin Coulombe

Patient Experience Journal

This study’s objective was to better understand family members’ experiences in order to identify how healthcare organizations can facilitate their participation in the care of a hospitalized loved one. Eighteen individuals at the bedside of a hospitalized loved one were interviewed individually. Roles at the bedside and factors that facilitated their participation or represented barriers were examined. A qualitative analysis using a mixed inductive/deductive approach was performed. Reassurance and emotional support, as well as sharing information with the healthcare team emerged as main roles. Quality and timeliness of the information received about the patient’s condition, prognosis and changes in medical …

A Framework For Conceptualizing How Narratives From Health-Care Consumers Might Improve Or Impede The Use Of Information About Provider Quality, Melissa L. Finucane, Steven C. Martino, Andrew M. Parker, Mark Schlesinger, Rachel Grob, Jennifer L. Cerully, Lise Rybowski, Dale Shaller

Patient Experience Journal

Consumers choosing a health-care provider have access to diverse information including narratives by patients about their prior experiences. However, little research has examined how narratives might improve or impede the use of information about the quality of providers’ performance. This paper describes a conceptual framework for examining mechanisms by which narrative information might influence consumer judgments and decisions about providers. We conducted a conceptual review of risk communication and behavioral decision research. We synthesized the literature to form the foundation of a conceptual framework for assessing how narrative information about provider quality impacts consumer decisions about providers. We identified four …

Patients’ Stories Of Encounters With Doctors: Expectations And Anxieties, Daniella Arieli, Batya Tamir

Patient Experience Journal

The study contributes to the understanding of how patients experience encounters with doctors. The study is based on the gathering and analysis of subjective stories of 'healthy' patients who live in Israel about their encounters with doctors. On the one hand, medical encounters were described as functional ritualistic events, and the doctor was described as an indifferent clerk. On the other hand, and often at the same time, medical encounters were perceived as incredibly meaningful and potentially fateful events, and the doctor as a supreme authority. Four main inter-connected expressions of this were: 1. The encounter as a ritual: A …

The Gift Of Pain With Transformative Possibilities, Richard B. Hovey

Patient Experience Journal

This personal narrative explores the experiences of pain metaphorically as a gift. The intention of this article is to offer alternative ways to reflect on pain, life and taking risks to move from health literacy toward health agency with help. I describe my approach to decision making using the hermeneutic wager which provides a means to imagine possibilities while mindfully assessing risk. Learning to manage pain and learning to live well with pain is a gift that we are not always aware is within our grasp.

The Sherpa Meets Maslow: Medicine And The Hierarchy Of Needs, Rana Lee Adawi Awdish Md Fccp

Patient Experience Journal

A critical care physician returning to medicine after her own critical illness experiences a crisis of orientation. She finds she can no longer serve as the Voice of Medicine. She replaces the former construct with a more humble model, in which the physician serves as an intermediary. She equates this new role to that of the Sherpas of Nepal. Maslow’s hierarchy of needs forms the mountain, as she reimagines her role in her patients’ lives.

The Consumer Has Spoken: Patient Experience Is Now Healthcare’S Core Differentiator, Jason A. Wolf Phd

Patient Experience Journal

In just a few days we will celebrate Patient Experience Journal’s (PXJ) 4^th anniversary since our inaugural publication. In these 4 short and quick years we have seen 163 articles published in our first four volumes that have stirred a significant focus on building the evidence base in patient experience. Not only has PXJ served as the central clearing house for thoughtful research, measurable cases, and insightful narratives, but it also has reinforced the breadth and depth of what patient experience truly encompasses. This integrated view was reinforced by the very voices of healthcare’s consumers in The Beryl Institute’s …

Research Support Infrastructure: Implementing A Clinical Research Coordinating Center, Julio A. Ramirez, Paula Peyrani, William A. Mattingly, Forest W. Arnold, Timothy L. Wiemken, Robert R. Kelley, Leslie A. Wolf, Ruth M. Carrico, Andrea Reyes-Vega

Faculty and Staff Scholarship

Insufficient infrastructure is one of the challenges facing investigators in the field of clinical research. At the University of Louisville (UofL) Division of Infectious Diseases, we developed a multidisciplinary coordinating center with the aim to support investigators in all aspects of the clinical research process. The objective of this article is to describe the composition and the role of the different units of the UofL Clinical Research Coordinating Center. The different components of the Center can serve as a template for institutions interested in developing a clinical research support infrastructure.