Health Services Research Commons^™

First, Do No Harm: The Patient's Experience Of Avoidable Suffering As Harm, Ashley Bauer Mha

Patient Experience Journal

Although my entire career has been spent in Patient Experience, nothing I have learned from data, evidence-based practice, or experience-based correlations, has been near as impactful as what I learned from being a patient. This article discusses my own experiences as a patient. I ask readers to consider instances of avoidable suffering as sources of harm that negatively impact patient perceptions, erode trust in care providers and healthcare delivery systems, and create barriers to engaging patients in their care. Recognizing how avoidable suffering creates harm challenges traditional views of Patient Experience as hospitality-based “soft skills” and helps to establish patient …

Elevating The Discourse On Experience In Healthcare’S Uncertain Times, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

Over the last five years, we have been inspired by the breadth of contributions that have helped shape the experience landscape through PXJ as well as the reach that the conversation on patient experience has had. Both the authors and readers of PXJ reinforce that the conversation on patient experience and the human experience in healthcare is not one dominated by national intent or even policy. While for some motivation has come in some part from mandated action, for most tackling this idea in healthcare is it grounded in two core realities. The first, in healthcare at its core we …

Call For Submissions - Special Issue July 2019: The Role Of Technology And Innovation In Patient Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2019 special issue on the topic of the role of technology in patient & family experience. A focus on technology and innovation will be essential in healthcare experience, requiring new ways of thinking and doing and the technologies and tools to ensure efficiencies, expand capacities and extend boundaries of care.

This special issue is open to all authors conducting cutting-edge research, implementing innovative practices or with powerful experiences to share around efforts in either creating or implementing technology focused on positively impacting the patient experience …

Wait Time Reality Check: The Convergence Of Process, Perception, And Expectation, Marian Hill, Lorianne Classen, Andrea Romay, Erika Diaz

Patient Experience Journal

There are few experiences as ubiquitous to patients as the experience of waiting. It is an occurrence that transcends diagnosis, is common to all demographics, and is shared across the continuum of care. The experience can be frustrating and full of ambiguity for patients and their families. Wait time and delays can lead to patients sensing a loss of control and magnify the feelings of anxiety they may already be suffering. In an effort to improve patient experience, a framework was developed to examine patient satisfaction as a function of expectations, perceptions, and reality. The process domain focused on the …

Family Experience Tracers: Patient Family Advisor Led Interviews Generating Detailed Qualitative Feedback To Influence Performance Improvement, Kathryn Taff, Sheryl Chadwick, Deejo Miller

Patient Experience Journal

Patient Family Advisors (PFAs) are integral partners in quality improvement processes at Children’s Mercy Kansas City. Mimicking Joint Commission patient tracers, the Family Experience Tracer program was created to gather perspectives from end users of care and provide valuable insights regarding the patient experience. The Patient and Family Engagement team collaborates with departmental and organizational leadership to define the scope of the tracer project and determine meaningful topics to elicit feedback from patients and families. Tracers are conducted across the continuum of care and are led by a Patient Family Advisor to establish an immediate peer relationship. Patients and families …

What Constitutes The Patient Experience Of Children? Findings From The Photo Elicitation And The Video Diary Study, Nina Karisalmi, Hanna Stenhammar, Johanna Kaipio

Patient Experience Journal

Patient experience (PX) is getting attention among researchers and healthcare service providers, but little is known about the experiences of child patients and how to explore those. This paper reports findings from a study in which two participatory research methods, photo elicitation and video diary, were applied to investigate the elements of children’s PX in the context of children’s hospital. The aim was to find out what elements constitute the PX of children aged 7–16 years. The research data were gathered in 2016–2017. Twenty-two child patients participated in the study: eight children aged between 7 and 10 in the photo …

What Medicine Can Learn From Pediatrics: A Mother's Perspective, Nancy Michaels

Patient Experience Journal

As a mother of a young adult child with Aspergers syndrome, as well as being a long-term patient myself (liver transplant in 2005), I have extensive experience in both camps. Recently my 20-year old son was admitted to a children’s hospital for a twisted colon that had to be surgically reduced. As the parent of a child with special needs and related physical health-related issues connected to him being on the autism spectrum, I was naturally very concerned about him entering a hospital (perhaps PTSD based on my own experience at moments). Surprising to me, the experience was a very …

Partners For Excellence: Committed To Meaningful Partnerships With Patients And Families In Pediatrics, Rachel Biblow, Msw, Sara Toomey Md, Mphil, Mph, Msc

Patient Experience Journal

Although the landscape in pediatrics continues to shift and change, one of the keys to our continued success remains the same… it’s about partnership. It’s clear the element of partnership is well woven through our organizations as illustrated by many of us having patient and family advisory councils, family consultants, and family partners. While this foundation is strong and essential, we must do more to truly listen, recognize the value of patient and family involvement, act upon the information shared, openly discuss issues, and strive for better together. True partnership with patients and families requires us to shift the paradigm …

Lessons For Patient Experience From The Voices Of Pediatrics And Children’S Hospitals, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

This special issue on patient & family experience in children’s hospitals and pediatric care underlines pediatrics’ position as a leader in the experience journey. In pediatrics and children’s hospitals significant efforts are made to the ensure the environment is welcoming and comfortable, there is a commitment to communicating to patients – the children that are cared for – in a way they can understand, and there is a clear intention of engaging family members as an integral part of the care experience. In acknowledging that this is a special issue on pediatrics, we would miss a significant opportunity if we …

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 …

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 …

“We Were Learning Together And It Felt Good That Way.” A Case Study Of A Participatory Group Music Program For Cancer Patients, Laurie Sadowski

Patient Experience Journal

Though there are similarities to music therapy, the field of community music in healthcare, while in its infancy, is steadily growing. This case study explored how semi-formal, active music-making can play a role in illness and recovery and provide patients with a sense of voice, connection, and community, and the efficacy of community music programming in a hospital. Six participants began and three participants completed a 6-week music class learning the ukulele. Interpretative Phenomenological Analysis (IPA) was used as a method for data analysis from semi-structured pre-questionnaires, transcribed classes, transcribed post-interviews, and weekly questionnaires from both the participants and the …

Using Appreciative Inquiry As A Framework To Enhance The Patient Experience, Kerry Moorer Mba, Schawan Kunupakaphun, Elilzabeth Delgado, Matthew Moody, Christina Wolf Msn, Rn, Cnl, Karen Moore Rn, Ms, Fache, Pracha Eamranond Md, Mph

Patient Experience Journal

The following case depicts the journey of a non-profit hospital in an under-served community and its attempts to turn around suffering patient experience. The Hospital turned to the theories of Appreciative Inquiry and the power of a strengths-based approach to create a framework to support the patient experience initiatives. Hospital leadership led the formation of a Patient Experience Team to implement ten initiatives in order increase the top box score in the domain of willingness to recommend the hospital, as that was selected as a global measure of success for the overall improvement project.

Operationalizing Person-Centered Care Practices In Long-Term Care: Recommendations From A “Resident For A Day” Experience, Jennifer L. Johs-Artisensi

Patient Experience Journal

As the senior population continues to age, long-term care is positioned for growth and care recipients are demanding more person-centered care. While long-term care leaders may understand and believe in the value of person-centered care, sometimes operationalizing practices to ensure its delivery can be challenging. Using an ethnographic approach, over three years, 159 long-term care administrator-in-training practicum students each lived as a resident for 24 hours in a nursing home. Following the experience, using the Picker Institute’s framework, each participant identified and justified an Always Experience® – an optimal experience they believed should routinely occur for every long-term care resident. …

Healthcare Providers Versus Patients' Understanding Of Health Beliefs And Values, Betty M. Kennedy, Matloob Rehman, William D. Johnson, Michelle B. Magee, Robert Leonard, Peter T. Katzmarzyk

Patient Experience Journal

This study examined how well healthcare providers perceive and understand their patients’ health beliefs and values compared to patients’ actual beliefs, and to determine if communication relationships maybe improved as a result of healthcare providers’ understanding of their patients’ illness from their perspective. A total of 61 participants (7 healthcare providers and 54 patients) were enrolled in the study. Healthcare providers and patients individually completed survey instruments and each participated in a structured focus group. Healthcare provider and patient differences revealed that patients perceived greater meaning of their illness (p = 0.038), and a greater preference for partnership (p = …

Rebalancing The Patient Experience: 20 Years Of A Pendulum Swing, Tiffany Christensen

Patient Experience Journal

This essay looks back at two decades of the patient experience movement. The evolution of patient experience includes moving from a belief system in which patients and families are solely the recipients of care to a model in which patients and families are co-designing treatment plans, systems and policies. This evolution has taken time and continues to evolve to this day. As the pendulum swings, we see that we have made great progress and, simultaneously, found ourselves with all new challenges to overcome.

Accelerating Patient Experience Performance: Collaboration And Engagement As Drivers For Success, Sidney Klajner

Patient Experience Journal

The efforts at Albert Einstein Jewish Hospital in São Paulo, Brazil have been focused on principles of excellence for many years as realized in engagement in and commitment to some of the leading global healthcare practices over the last decade. In reinforcing a commitment to excellence and continuous improvement, the patient experience efforts at Einstein have evolved from an operating structure for patient experience efforts to a truly integrated program for action in address all elements in the organization impacting and ultimately driving patient experience outcomes. By grounded efforts in core evidence-based practice, while engaging the hearts and minds of …

The Patchwork Perspective: A New View For Patient Experience, Jason A. Wolf Phd

Patient Experience Journal

As Patient Experience Journal has continued to contribute to the expanding patient experience conversation, we too recognize this has been a significant year of progress for the patient experience movement. This progress has emerged in a number of ways in research, practice and programs that reveal a comprehensive and integrated approach is now more than ever a central consideration in a commitment to experience. This idea of interwoven efforts, begins to frame an image – a patchwork of clear, critical and comprehensive pieces that while operating distinctly each have value, yet when bringing them together have an exponential opportunity to …

Call For Submissions. Special Issue – July 2018: Patient & Family Experience In Children’S Hospitals And Pediatric Care, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce a call for submission for its special issue scheduled for July 2018 on the topic of patient & family experience in children’s hospitals and pediatric care. This special issue is open to all authors conducting cutting-edge research, implementing innovative practices or with powerful experiences to share around efforts in either children’s hospitals or pediatric care. It is encouraged that articles submitted deal directly with efforts in those care settings. The issue will look for pieces that address evidence-based efforts at improvement, practices that have impact on outcomes or stories that reflect …

Experience-Based Co-Design: A Method For Patient And Family Engagement In System-Level Quality Improvement, Bianca Fucile, Erica Bridge, Charlene Duliban, Madelyn P. Law Dr.

Patient Experience Journal

Integrating patient and family member needs, wants and preferences in healthcare is of utmost importance. However, a standardized patient and family engagement model to understand these needs, wants and preferences in order to translate into high quality improvement activities is lacking. Experience based co-design (EBCD) is an approach that enables patients, family members and healthcare providers to co-design improvement initiatives together. In this study, EBCD was employed to: 1) assess the current state of information and educational resources at a local oncology center and 2) partner with patients, family members, and healthcare providers to create quality improvement initiatives targeting identified …

Lack Of Patient Involvement In Care Decisions And Not Receiving Written Discharge Instructions Are Associated With Unplanned Readmissions Up To One Year, Kyle A. Kemp, Hude Quan, Maria J. Santana

Patient Experience Journal

This retrospective, cross-sectional study examined the relationship between aspects of inpatient communication and discharge instructions and unplanned, all-cause readmissions using individual-level data up to one-year post-discharge. Patients completed the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) telephone survey within 6 weeks of hospital discharge in Alberta, Canada. Survey data were linked to corresponding inpatient records. Independent variables included selected demographic characteristics, clinical variables, and five survey questions: a) patient involvement in care decisions, b) receiving written information at discharge, c) understanding the purpose of taking medications, d) understanding responsibility for one’s health, and e) discussing help needed when …

A Trip To Healthcare, David E. Matz

Patient Experience Journal

This narrative shares how my experience with two colonoscopies and three surgeries in one year taught me that I am not so good at engaging in treatment decisions. I thought I was. This essay sets out where I made my mistakes, why I believe I made those mistakes, and how the hospitals, intentionally or not, made good decision-making harder. I offer two suggestions for enhancing the role of the patient in decision-making including 1) Every doctor in a diagnostic-decision-making interview should use the sentence “You have some choices here.” The doctor will have preferences, of course, but the patient needs …