Medicine and Health Sciences Commons^™

The Use Of Patient Stories As A Knowledge Translation Strategy To Facilitate The Sustainability Of Evidence-Based Interventions (Ebis) In Healthcare, Rachel Flynn, Lauren Dobson, Ella Milne, Alyson Campbell, Kelly Mrklas, Tracy Wasylak, Shannon D. Scott

Patient Experience Journal

Background: Patient stories are real-life experiences told from a patient’s or their family’s perspective. In the past, patient stories have served many purposes in healthcare, such as spreading knowledge, educating providers, or conveying the patient experience. Patient stories are increasingly used as a knowledge translation (KT) strategy to improve the uptake of evidence-based interventions (EBIs) into clinical healthcare practices by embodying the patient experience. However, little is known about the use of patient stories to support the sustainability of EBIs in healthcare practices. There is a need to understand how patient stories can be used for the long-term use and …

Looking Back To Move Forward: The Next Decade And Beyond For Human Experience, Jason A. Wolf

Patient Experience Journal

This issue comes out at an important moment for the experience conversation. It was ten years ago from the publication date of this issue on April 30, 2014, that the first issue of Patient Experience Journal (PXJ) was released. PXJ was intended to be a gathering place. A virtual town square for the experience movement where people could and would come together to share ideas and proven practice. This value of collaboration is at the foundation of our very efforts as a global community through The Beryl Institute. Experience is not some secret competitive ingredient in the world of healthcare. …

Meaningful Engagement Of Patients And Families In A Complex Trial Of Advance Care Planning In Primary Care, Angela K. Combe, Deborah L. Dokken, Mary M. Minniti, Annette M. Totten

Patient Experience Journal

Engagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder’s (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data …

Informative Material For Patient Empowerment In Sensitive Situations, Iris Reychav, Lin Zhu, Avi Parush, Roger Mchaney, Daphne R. Raban, Amy Lauren Shapira, Rami Moshonov

Patient Experience Journal

Women diagnosed with HPV face a hard-to-understand disease that may impact their psychological and physical health and may pose challenges communicating with healthcare providers in sensitive settings. We posit patient empowerment through targeted educational materials can improve sensitive communication and lead to better health outcomes. This study measured the impact of a patient-empowerment process used in a gynecology clinic for HPV patients to improve sensitive communication during medical-related meetings and on subsequent patient empowerment outcomes. The empowerment process was based on expert-vetted informative material made accessible in the physician’s waiting room on tablet devices. Communication between physicians and patients was …

Medicine And Kindness, A Glorious Concurrence?, Araya Gautam

Patient Experience Journal

This article unfolds the journey of a 28-year-old junior doctor entangled in the throes of a pernicious anemia diagnosis during her travels abroad, a scenario exacerbated by the grip of a COVID-19 lockdown. Adrift without medical insurance and distant from her family, she found herself under the care of a compassionate on-call resident, emphasizing the crucial role of kindness and compassion in her predicament. Her treatment regimen encompassed a series of CBC tests meticulously tracking cobalamin and ferritin levels, complemented by extensive examinations for iron deficiency and a regimen of vital vitamin B12 injections, all carried out under vigilant scrutiny …

Part Of The Team: Effecting Change And Sharing Power In Healthcare Settings, Jessica Stanier, Rachel Purtell, Dave Thomas, William Murray

Patient Experience Journal

In 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were able to co-identify common concerns and together develop a distinctive narrative framework for effecting change by sharing patient experiences. This narrative framework is designed to help patients position themselves as ‘part of their healthcare team,’ emphasising roles and responsibilities between patients and health practitioners to compare ideals with reality in patient experiences. While the project was promising, several factors …

Non-Covid-19 Hospitalizations: Patients’ Experiences During The Covid-19 Pandemic, Julia Patrick

Patient Experience Journal

The purpose of this Qualitative Descriptive study was to describe the experience of hospitalized adults during the pandemic who did not have COVID-19. Semi-structured interviews were conducted with 20 English-speaking adults who were hospitalized on a medical or surgical floor after April 1, 2020 and were negative for COVID-19 throughout their entire hospital stay. The interview questions focused on the overall hospital experience, the nurse’s role in their experience, comfort needs, and the experience of having comfort needs met during the hospitalization. Conventional content analysis of the transcribed transcripts revealed five main themes related to the hospital experience: I don’t …

Global Child And Family-Centered Care Fellowship, Education And Mentorship For Pediatric Healthcare Professionals: A Literature Review, Ashley Zheng, Bobbijo Pansier

Patient Experience Journal

Child- and family-centered care (FCC) is increasingly accepted and implemented to optimize the healthcare experience for patients, their families, and healthcare professionals. Standish Foundation for Children, a 501(c)(3) non-profit, has designed and piloted a fellowship to educate pediatric healthcare professionals in FCC & psychosocial care via an inquiry and mentorship model in Tbilisis, Georgia. This review aimed to evaluate and synthesize existing literature on psychosocial and FCC mentorship for pediatric healthcare professionals in four parts: ongoing need, effects on healthcare professionals, effects on children and their families and/or caregivers, and in cross-country healthcare settings. Reviewers searched open-source databases for articles …

Understanding Modern Drivers Of The Employee Experience In Healthcare, Antonio Pangallo, Tim Atwell, Kristi Roe, Adrienne Boissy

Patient Experience Journal

Employee engagement has been considered the guiding metric to convey the health, loyalty, and performance of the healthcare workforce. However, the pandemic created new challenges and stimulated deeper conversations around remote work, systemic racism, inclusivity, trust, well-being, and mental illness, which calls into question whether engagement alone is enough. Using an employee experience model deployed in other industries, we identified key drivers of six employee experience (EX) outcomes. We conducted a panel study with close to 5,000 nurses and physicians to identify and prioritize current key drivers specific to the healthcare employee experience. Relative weights analyses suggest that being treated …

Virtual Cardiac Rehabilitation: A Rapid Shift In Care Delivery In Response To The Covid-19 Pandemic, Clare Koning, Brigitte Friesen, Justin Daigle, Anita Ytsma

Patient Experience Journal

Cardiac rehabilitation is an integral part of recovery from a critical cardiac life event. This preventative strategy involves exercise rehabilitation, education, lifestyle modification, and self-management coaching – preparing patients for lifelong changes. Prior to the COVID-19 pandemic, these activities were supervised by clinicians in-person, on hospital grounds, and in large groups. However, due to pandemic regulations in Canada imposed in March 2020, all in-person group activities were restricted. Within the first two months of the pandemic, almost half of cardiac rehabilitation services in Canada closed and half of their employees were deployed to other areas. To continue to provide patient …

The Use Of Patient Experience Data For Quality Improvement In Hospitals: A Scoping Review, Lauren Cadel, Michelle Marcinow, Harprit Singh, Kerry Kuluski

Patient Experience Journal

In this paper we identified what was reported in the literature on qualitative and quantitative approaches used to capture and improve patient experiences in a hospital setting. For inclusion, articles were required to describe an embedded strategy for capturing patient experiences that was used to inform quality improvement in a hospital setting. Articles also had to be published in English between January 2004 and December 2020. Six databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Health and Psychosocial Instruments and Cochrane Library) and grey literature (relevant hospital and government websites) were searched. All articles were screened by two reviewers and any disagreements were …

Beyond Hcahps: Analysis Of Patients’ Comments Provides An Expanded View Of Their Hospital Experiences, Andrew S. Gallan, Rakesh Niraj, Awanindra Singh

Patient Experience Journal

An important concern for health care professionals is that standardized patient surveys may not fully capture all the topics that are important to patients. As a result, health care professionals may not have a complete picture of what their patients experience. The purpose of this research is to utilize a state-of-the-art Natural Language Processing technique to make sense of patients’ solicited, unstructured comments to gain a deeper and broader understanding of their experiences in the hospital. We analyzed a large dataset of inpatient survey responses (48,592 patients generating 65,998 comments) by a patient experience survey vendor for an eleven-hospital health …

What Are The Sources Of Patient Experience Feedback In The Uk Prison Setting, And What Do Patients And Healthcare Staff Think About Giving And Receiving Feedback In Prison? A Qualitative Study, Frances Hankins, George Charlesworth, Philippa Hearty, Nat Wright, Laura Sheard Dr

Patient Experience Journal

Background: The collection of patient experience feedback (PEF) has seen a marked global increase in the past decade. Research about PEF has concentrated mainly on hospital settings albeit a recent interest in primary care. There has been minimal research about PEF in the prison healthcare setting. The aim of this study was to explore the role of prison PEF, the different forms it might take and the perceptions of healthcare staff and people in prison. Methods: Qualitative face to face interview study involving 24 participants across two prisons (male and female) in the North of England, involving 12 healthcare staff …

The Quantitative Assessment Of Patient Satisfaction In The Covid-19 Epidemic Compared To The Epidemic-Free Period, Vesna Zupančič, Ajda Rogelj

Patient Experience Journal

Surveying patient satisfaction is considered an important part of any systematic program of quality assurance. Quality of healthcare service and patient satisfaction has been affected by the current COVID-19 epidemic. The purpose of the study was to determine how COVID-19 epidemic has affected patients in Slovenia as it is evident via permanently available questionnaire and from studying this data source to improve our response to future crises and to improve the resilience of healthcare systems. A secondary analysis of 12,756 completed questionnaires was performed via freely available patient satisfaction questionnaire in the period from October 2019 to June 2021. The …

Adapting And Responding To A Pandemic: Patient And Family Advisory Councils In Children's Hospitals During Covid-19, Pam Dardess, Deborah L. Dokken, Ndidi I. Unaka, Jesse Hsu, Mindy Hoang, Andrew F. Beck, Beverley H. Johnson

Patient Experience Journal

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid …

Patient And Provider Perspectives Regarding Criteria For Patient Prioritization In Two Specialized Rehabilitation Programs, Julien Déry, Angel Ruiz, François Routhier, Marie-Pierre Gagnon, André Côté, Daoud Ait-Kadi, Valérie Bélanger, Marie-Eve Lamontagne

Patient Experience Journal

To increase fairness and equity in access to rehabilitation services, a strategy emerging from the literature is patient prioritization. Selecting explicit prioritization criteria is a complex task because it is important to simultaneously consider the objectives of all stakeholders. The of this study was to compare service users’ and service providers’ perspectives regarding patient prioritization criteria in two rehabilitation programs. We conducted a multiple case study in two rehabilitation programs, i.e., a driving evaluation program and a compression garment manufacturing program. We sent a web-based survey asking two groups (patients and providers) to individually produce a set of criteria, then …

Perceptions Of Care & Patient-Provider Communication By Varying Identity Groups In A Collegiate Health Clinic, Yewande O. Addie, Tatiana Maser, Cecilia Luna, Casey Rayfield, Kelli R. Agrawal

Patient Experience Journal

LGBTQ patients experience discrimination and poor access to quality health care, but there is little inquiry on the experiences of LGBTQ patients in student health clinic. The purpose of this study was to examine the quality of patient-provider communication (PPC) among sexual and gender minority patients, especially those who have intersecting minority identities, in a student healthcare setting. An online survey measured PPC using the Communication Assessment Tool (CAT) and contextual questions regarding identity and perceptions of judgment. Analysis tested intersectional variance in both. A convenience and snowball sample of 102 respondents, 18+, that utilized health services at a public …

Factors Associated With Patient Rating Of Physician Communication Effectiveness And Satisfaction In Musculoskeletal Care, Amirreza Fatehi, Amanda Gonzalez Md, David Bandell, Joost Kortlever, Léon Rijk, David Ring

Patient Experience Journal

Effective communication is associated with adherence to healthy habits. This study sought factors associated with communication effectiveness and satisfaction with musculoskeletal specialty care in order to inform efforts to improve communication effectiveness using measurement, feedback, and coaching. After a new or return upper extremity specialist visit, 146 adult patients completed a survey recording demographics, measures of catastrophic thinking in response to nociception, symptoms of depression, and symptoms of anxiety, and they rated communication effectiveness (5 questions answered on a 4-point Likert scale) and satisfaction with the visit (slider with anchors of 0 and 100). Patients also provided text answers to …

Patient Participation Strategies: The Nursing Bedside Handover, Irene Decelie

Patient Experience Journal

Patient participation is an important goal in today’s health care and considered necessary to achieve safe and quality patient care. The purpose of this paper is to discuss the historical and theoretical background surrounding the concept of patient participation in health care and specifically to examine patient participation strategies which have been reported to be of influence when employed during the nurse to nurse and patient to nurse activities encompassed in the bedside handover. The bedside handover is the nursing activity of transferring primary nursing responsibility of care from one nurse to another. Encouraging patients to participate during this process …

The Impact Of Parental Presence In The Nicu On Hospital Alienation And Other Distress Measures, Katherine D. Taylor, Lindsey Mclaughlin, Devon Kuehn, Justin Campbell, John Kohler Sr, Jason Higginson

Patient Experience Journal

Parental presence in the neonatal intensive care unit (NICU) positively impacts infant development. Few studies have examined the impact of presence on parental distress. Alienation, or lack of trust in the healthcare team, may occur independently from other forms of distress. Increased parental presence was hypothesized to reduce alienation by allowing for more positive in-person interaction with hospital staff. Parents of infants born < 28 weeks or < 1000 grams were prospectively enrolled and completed several surveys measuring distress prior to discharge, including a novel hospital alienation questionnaire. Spearman correlation was used to compare distress measures and visitation rates of 68 mothers and 6 fathers. Alienation was rarely reported and was uncorrelated with other distress measures. Maternal presence was most strongly correlated with anxiety, though this was not statistically significant. Fathers who were more alienated were present in the NICU less and correlation between maternal and paternal alienation was strong. These results were not statistically significant, however. Though statistically significant results were not produced in this research, hospital alienation does appear to be a distinct concept that has been unstudied previously.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

• Access other PXJ articles related to this lens.
• Access other resources related to this …

Special Issue – July 2021 The Impact Of Inequity & Health Disparities On The Human Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2021 special issue on the impact of racial inequality, health disparities, and discrimination on the human experience. The world now finds itself in the grips of a global pandemic that is taking its toll on communities socially and economically, placing strain on healthcare workers and revealing the very systemic weaknesses and inherent biases that have been resting just beneath the surface of our society for years. The challenge of disparity and inequity is not unique to healthcare, but in the era of COVID-19, what many …

My Six-Word Story: Power To Reconnect And Connect, Alexie Puran

Patient Experience Journal

The COVID-19 global pandemic is a threat to the well-being of our healthcare professionals. Recent studies on the mental health effects of healthcare professionals from China and Italy have revealed higher levels of depression, anxiety and psychological distress. As a Pediatric Emergency Medicine physician working on the frontline and a H3 (Helping Healers Heal) Peer Champion, I sought to support my staff’s well-being and emotional resilience. My Six-Word Story, a simple and meaningful activity was designed to support the psycho-social well-being of those on the frontline providing care. This new project was implemented in the Pediatric Emergency Department at NYC …

Finding Common Threads: How Patients, Physicians And Nurses Perceive The Patient Gown, Christy M. Lucas, Cheryl Dellasega

Patient Experience Journal

Evidence-based care is standard practice in medicine, but the patient gown has fallen outside the scope of scholarly research. The current gown renders a patient vulnerable, diminishing patients’ sense of identity, agency, and dignity with its one-size-fits-none design. The impact on providers is similarly neglected. Our objective was to explore how patients and providers derive meaning from patient gowns. A convenience sample at an academic medical center was interviewed utilizing a standardized framework developed by a medical student and two PhD-prepared researchers with experience in qualitative methods. The study was inductive in nature, seeking to understand perceptions of the patient …

Patient Feedback: Listening And Responding To Patient Voices, Simon J. Radmore, Kathy Eljiz, David Greenfield

Patient Experience Journal

The study aim was to identify key strategies to improve organisational systems and care experiences, to confront the challenges of achieving effective patient feedback throughout a large healthcare organisation. A mixed methods exploratory approach was used. Purposive and snowball sampling, semi-structured interviews with key stakeholders, and document analysis of existing feedback processes was utilised. The setting was a large metropolitan Local Health District in Sydney, Australia. Data was examined using thematic and content analysis. Participants identified no single feedback process was able to adequately gather all feedback necessary to reflect the patient experience. Patient feedback processes that are most useful: …

Service User Interview Panels For Recruitment To Uk Child And Adolescent Mental Health Services: A Questionnaire Study Exploring The Experiences Of Young People, Staff And Candidates, Sophie M. Allan Ms, Emma Travers-Hill Dr

Patient Experience Journal

Service user involvement is increasingly important in health and social care policy, including in Child and Adolescent Mental Health Services (CAMHS), but evidence evaluating involvement initiatives is lacking. This questionnaire study evaluated the use of young people’s (YP) interview panels in the recruitment of CAMHS staff, from the perspectives of YP, candidates and members of the staff interview panels. Self-report questionnaires were administered to YP, candidates and staff interview panel. This included quantitative and qualitative “free text” responses. YP’s panels were found to be important in hearing the voices of YP; participants all stated they would like YP to take …

Is It Fair To Compare? A Patient And Family Experience Of Two Healthcare Systems And Neurosurgical Teams Within A Two-Week Period, Laura Miller Cpxp

Patient Experience Journal

As the mother of a 28-year-old son with cerebral palsy and hydrocephalus, and as a healthcare consultant focused on patient experience and professional development, I have a unique perspective and skill set. Recently he experienced symptoms that included an excruciating headache, neck pain and lethargy. Fearing his ventriculoperitoneal shunt had malfunctioned, he went to the emergency room and was later admitted on the neuro inpatient floor for a three-day hospitalization. His original shunt had been placed in 1991, and he never had an issue with until August 2018. While in the hospital, he was informed that he was no longer …

Nhs England Always Events® Program: Developing A National Model For Co-Production, Claire Marshall, Angela Zambeaux, Esther Ainley, David Mcnally, Jenny King Miss, Lorraine Wolfenden, Helen Lee

Patient Experience Journal

NHS England, the Institute for Healthcare Improvement, Picker and NHS Improvement started the work described in this article to strengthen how patients, carers and staff working together in co-design and co-production can make a real difference in improving experience of care. Always Events®, which is an improvement methodology for the co-design and consistent implementation of those aspects of patient experience that matter most to patients in a health care setting, was chosen. The approach has been to first test the methodology with three organizations then to spread to a substantial proportion of acute health care providers, with concurrent scale-up within …

A Case Study Of The Patient Wait Experience In An Emergency Department With Therapy Dogs, Colleen A. Dell, James Stempien, Lindsey Broberg, Alicia Husband, Lacey Jurke, Betty Rohr, Jane Smith, Joseph Rubin, Susan Tupper, Donna Goodridge, Cathie Fornssler, Logan Fele-Slaferek

Patient Experience Journal

The quality of patient healthcare is a growing concern in Canada’s hospital emergency departments (ED) due to increasing wait times and associated adverse outcomes. A developing body of literature indicates that therapy dogs can positively impact the patient experience. In 2016, members of our team partnered with the Royal University Hospital (RUH) in Saskatchewan to become the first ED in Canada to integrate a visiting therapy dog to positively impact the patient wait experience. The aim of this preliminary case study was to examine if and how this unique initiative impacted patients’ feelings during their ED wait. A brief questionnaire …

Developing The First Pan-Canadian Acute Care Patient Experiences Survey, Salima Hadibhai, Jeanie Lacroix, Kira Leeb

Patient Experience Journal

The Canadian Institute for Health Information (CIHI) in partnership with stakeholders sought to develop the first pan-Canadian patient experiences survey for inpatient care (CPES-IC). The goal was to provide a national survey standard for comparative patient experience measures to facilitate benchmarking for quality improvement. A cognitive and pilot testing study design was performed using survey data from adult inpatient care settings. Participants included the inter-jurisdictional members (IJ), survey subject matter experts and CIHI (The Group). Cognitive testing of the survey took place in three Canadian jurisdictions in English and French languages. Thirty-nine individuals participated in one-on-one interviews. During pilot testing, …

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 …