Medicine and Health Sciences Commons^™

Transforming The American Experience Of Death: What Dreams May Come?, Melinda Xu, Geoffrey A. Silvera Phd, Mha, Lyle Walton, Jane Banaszak-Holl

Patient Experience Journal

There is no means to evaluate the death experience in the US healthcare system. Other countries have established population-wide measures to evaluate and improve the dying experience for patients and their families. With an increasing population of advanced-age persons, changes in sites of death, and a continually fractured healthcare delivery system, there is a need to establish a universal assessment of the quality of death in the US. In this commentary, we outline the need for such an assessment and build off of previous literature on the various existing assessments of the quality of death that have typically been reserved …

Patient-Centered Care Frameworks, Models And Approaches: An Environmental Scan, Aghna Wasim, Maria Sajan, Umair Majid

Patient Experience Journal

Although the definition of patient-centered care (PCC) remains unclear, researchers and healthcare professionals describe the concept as treating the patient as a unique human being with consideration for their physical and psychosocial needs and emphasize the importance of shared-decision making between patients and healthcare professionals. However, discussion around the connection and overlap between PCC and patient and family engagement (PE) has been limited. Some authors describe PE as an operationalization of PCC, while others consider PE a type of PCC. An enhanced understanding of PCC might allow for improvements in implementing PE across healthcare systems. Insight into the operationalization of …

A Concept Analysis Of The Patient Experience, Tanja Avlijas Rn, Mscn, Janet E. Squires Rn, Phd, Michelle Lalonde Rn, Phd, Chantal Backman Rn, Phd

Patient Experience Journal

Patient experience, an essential indicator of quality patient care, is of increasing importance to hospitals that want to improve and maintain strong patient experience metrics to remain competitive in the business of healthcare. The aim of this study was to clarify the concept of the patient experience by identifying its existing definitions, methods of measurement, and underlying themes and attributes, to differentiate it from similar concepts and propose an operational and theoretical definition to guide valid and reliable development of future assessment tools. Walker and Avant’s eight-step methodology served as the framework for this concept analysis. A literature search, using …

Determinants Of Ambulatory Patients’ Satisfaction With Encounter At Core Service Stations In A Tertiary Hospital Of A Developing Country, Ndubuisi Emuka Opurum, Ogaji Samuel Daprim, Felix Emeka Anyiam

Patient Experience Journal

Patients may have different and complex convictions of what their idea of satisfaction is, which may not be addressed regarding what they perceive as satisfaction. Therefore, using the patients’ demographic and clinical characteristics could tailor the individual needs of these patients, hence, providing feedback and recommendations on improvement in services provided. This study examined the determinants of patients’ satisfaction with general outpatient department (GOPD) services of a tertiary hospital in Rivers State, Nigeria. A descriptive cross-sectional study was carried out among new and repeat patients attending the GOPD of the University of Port-Harcourt Teaching Hospital, Rivers State, Nigeria. A structured …

Technology About Me Without Me: An Examination Of The Relationship Between Patient-Facing Technology And Patient Experience, Geoffrey A. Silvera Phd, Mha, Courtney N. Haun Phd, Mph

Patient Experience Journal

To appreciate the role of electronic health records (EHRs) in achieving the goals of patient-centered care, scholars have focused primarily on the influence of EHR capabilities on clinical providers’ behaviors. The objective of this study is to examine the degree to which patient-facing technology (P-Tech) in U.S. hospital EHRs are associated with patient evaluations of their care experience. A cross-sectional OLS regression is executed to examine the relationship between P-Tech and patient experience on a sample of U.S. hospitals (n=1,168) compiled via data from CMS, the American Hospital Association’s (AHA) Annual Survey (2014), and the AHA Health …

Living With Multiple Sclerosis As A Former Marathon Runner: Impact Of Attitude And Past Behaviour On Self-Care Maintenance And Perseverance, Michael Stephanou

Patient Experience Journal

As healthcare professionals, we have a duty to promote the wellbeing of individuals living with chronic diseases and this could be accomplished through the establishment of self-care strategies that are both collaborative and self-directed. Insight into the complex behaviours and backgrounds of individuals who show initiative in dealing with chronic disease could help achieve this by revealing drivers of health-seeking and engaging behaviours. Therefore, by deducing the complex interactions between attitude, past experiences and disease outlook, broader patient welfare could be championed through the implementation of targeted interventions which promote self-care in chronic disease. This article aims to explore these …

Resource Utilization Among Informal Caregiver Of Lung Cancer Patients Undergoing Treatment, Charlotte T. Lee, Clarelle L. Gonsalves, Jenny Gao-Kang, Wyatt G. Pickrell, Ruth F. Barker

Patient Experience Journal

The objective of this study is to explore patient and caregiver factors that shape the use of available resources to support caregiving for lung cancer patients undergoing treatment. A mixed-method study was conducted at one regional cancer centre within the Province of Ontario, Canada, using concurrent triangulation design. Adult patients with lung cancer (n=46) and their caregivers (n=42) (37 patient-caregiver dyads) were invited to complete a one-time study survey. Informal caregivers (n=20) also participated in a one-time semi-structured interview. Descriptive statistics and Pearson’s correlation were used to examine patterns of resource utilization and associations among study variables. Content analysis was …

Understanding Patient Experiences Before And During The Covid-19 Pandemic: A Quasi-Experimental Comparison Of In-Person And Virtual Cancer Care, Linda Watson, Claire Link, Siwei Qi, Eclair Photitai, Lindsi Chmielewski, Diane Fode, Andrea Deiure

Patient Experience Journal

The COVID-19 pandemic prompted the immediate widespread implementation of virtual care appointments in Cancer Care Alberta (CCA). This study aimed to compare patient experiences and satisfaction with in-person care provided prior to the pandemic and virtual care provided after the COVID-19 outbreak. Surveys were conducted to compare patient satisfaction, using the Your Voice Matters (YVM) experience survey, between patients in the pre-pandemic in-person (baseline) and post-outbreak (virtual) cohorts. Generalized Linear Models (GLMs) with an ordinal logistic link were used, adjusting for self-reported health status and other covariates, to investigate the association between cohort type and patient satisfaction. Despite having higher …

Consumer Experience Of Mental Health Services During The Covid-19 Pandemic: Evidence From An Australian Mental Health System, Sarah Kelshaw, Jason Boyd, Irene Gallagher, Grant Sara

Patient Experience Journal

COVID-19 has increased the need for mental health care but disrupted its delivery. We examined impacts of the first year of the COVID-19 pandemic on consumer experience of NSW hospital and community mental health services, compared to their pre-COVID baseline. We also examined whether increased telehealth use was associated with changes in the quantity or experience of community mental health care. Data were 73,488 Your Experience of Service (YES) surveys from state mental health services in New South Wales (NSW), Australia, grouped into three periods: pre-COVID (January 2018 to March 2020), early-COVID (April to June 2020) and stable-COVID (July to …

Family’S Sufferings From Asymptomatic Covid: Clinicians’ Perspective, Neha Joshi Dr, Jitender Nagpal Dr, Anand Sinha Dr

Patient Experience Journal

Anticipating dire consequences, in 2020 the world braced itself for the unparalleled pandemic by resorting to unprecedented measures including stringent lockdowns, unforeseen social isolations, spotlight focus, resource diversions besides reorganized healthcare systems to name the quintessential few. Such unifocal convergence enhanced the vulnerabilities of patients dependent on non-COVID healthcare assistance. For a nation with a meagre allocation of 0.7 hospital beds per 1000 people and a lopsided doctor-population ratio of 1:1800, COVID-centric measures created unintended complications. Ironically, many succumbed in myriad ways, not due to the pandemic but due to the attributes of the survival measures. While such consequences cannot …

Using A Multidisciplinary Data Approach To Operationalize An Experience Framework, Kevin Spera, Garrett Holmes, Sunni Barnes

Patient Experience Journal

Like many healthcare organizations, Baylor Scott & White Health (BSWH) is awash with data. Often, this data is used in siloed departments to monitor safety and quality, make local business decisions, and motivate staff to improve processes to achieve sustained excellence and market share. As margins get thinner and competition from various disrupters increases, organizations have tried to improve the patient experience to remain viable as part of a calculated strategy. Nevertheless, these entities have struggled to focus limited resources for sustained improvement in patient experience. This article details how a large Texas-based healthcare system "operationalized" The Beryl Institute's Experience …

Patient Engagement In An Academic Community-Based Primary Care Practice’S Management Committee: A Case Study, Emmanuelle Trépanier, Marie-Pascale Pomey, Paule Lebel

Patient Experience Journal

Patient engagement in primary care has been the focus of many studies; however, little research has evaluated its added value to organisational management in an academic community-based primary care practice (ACBPCP). In 2017, managers of an ACBPCP in Montreal, Canada, decided to integrate patients into the organization’s management committee to enhance the quality and relevance of decision-making for clinical services, education and research.

Objectives were to 1) assess patients’ role and influence on an ACBPCP management committee’s decision-making process; 2) identify the facilitators of and obstacles to patient involvement in this context; and 3) evaluate the impact of this innovative …

Comparing Patient Experience Survey Scores Between Telehealth And In-Person Ambulatory Pediatric Subspecialty Visits, Sean T. Bomher, Matthew Wood, Elizabeth Uhlhorn, Sandro Marques, Lee Kwiatkowski, Natasa Tekic, Cameron D'Alpe, Natalie M. Pageler, Lane F. Donnelly

Patient Experience Journal

To determine the effect of encounter methods on patient experience, we evaluated patient experience survey data comparing scores between telehealth and in-person visits and pre-COVID-19 and COVID-19 time periods. Pediatric subspecialty visits were either in-person or via telehealth and received the same 16-question patient experience survey. Top box (5/5) scores were compared between in-person and telehealth visits for pre-COVID-19 and COVID-19 periods as well as between periods for in-person and telehealth visits. In addition, for both time periods and encounter methods, correlation analysis was performed to evaluate best correlation between likelihood to recommend practice and the 15 other survey questions. …

Consumer Representative Experiences Of Partnership With Health Workers In Australia, Coralie R. Wales, Judith A. Lababedi, Alison Coles, Philip Lee, Emma Clarke

Patient Experience Journal

We examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful …

Building Patient Participation In Quality Of Care Through The Healthcare Stories Project: A Demonstration Program In New York State Hiv Clinics, Abigail Baim-Lance, Freda Coren, Margaret Brown, Hazel Lever, Daniel Tietz, Bruce Agins

Patient Experience Journal

There is growing recognition that patients should play a central role in defining, assessing, and improving the quality of healthcare, thereby enhancing patient experiences. Healthcare organizations struggle to meet these goals, which require becoming more patient-centered and patient-involved. The Healthcare Stories Project (HCSP), a demonstration program of the NYS Department of Health AIDS Institute, aimed to address this. HCSP comprises three, stepwise activities to: 1) Capture how patients define and experience ‘quality of care’ in the clinic; 2) Engage patients and providers as equal partners in understanding and improving the quality of care; and through partnerships, 3) Support the building …

The Right Premtm: Rasch Analysis Of A New Patient Reported Experience Measure For Use By Older People In Hospital, Louise Heuzenroeder, Jyoti Khadka, Alison Kitson

Patient Experience Journal

Healthcare rights exist to protect older people from harm and to empower older people to participate in their care with independence, choice and control. Multiple investigations revealing abuse provide evidence that older people’s rights are being breached. Older people must have the opportunity to report on their experience of care against their rights. The Right PREM^TM is a new instrument designed to measure older people’s experience of care against their healthcare rights. The objective of this cross-sectional validation study was to assess the psychometric properties of a new instrument to measure the experience of care consistent with the healthcare …

Sociodemographic Characteristics And Patient And Family Experience Survey Response Biases, Lauren N. Brinkman, Myra S. Saeed, Andrew F. Beck, Michael C. Ponti-Zins, Ndidi I. Unaka, Mary C. Burkhardt, Jareen Meinzen-Derr, Samuel P. Hanke

Patient Experience Journal

Enhancing Patient and Family Experience (PFE) is vital to the delivery of quality healthcare services. Sociodemographic differences affect health outcomes and experiences, but research is limited on biases in PFE survey methodology. We sought to assess survey participation rates across sociodemographic characteristics. This retrospective study analyzed a health system’s ambulatory PFE survey data, collected January 1 – July 31, 2019. Outcomes of interest were rates of survey response, completion, and comments. Predictors included respondent-reported race, ethnicity, language, and measure of social deprivation attached to a respondent’s home address. Addresses were geocoded to census tracts. The tract’s degree of socioeconomic deprivation …

Testing Of Patients First In A Real-World Setting, As A Patient Experience Accreditation Tool For Hospitals And Clinics, Carlos Bezos, Rosa M. Salazar, María Caballero

Patient Experience Journal

Many healthcare providers are developing patient experience strategies and investing in this area. Yet, patients have no means to know if a hospital is following proper patient experience standards. For this reason, it is important to certify that hospitals and clinics follow own a patient experience policy and apply patient experience standards. This is the reason why the accreditation Patients First was developed. The goal of this study is to test the accreditations’ feasibility in a real-life environment. The accreditation was tested at the Guadarrama Hospital, nearby Madrid in Spain. A mixed team between Guadarrama staff and the Institute for …

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 …

Exploring Mental Health Experience In Individuals Living With Temporomandibular Disorders, Wafaa Safour, Richard Hovey

Patient Experience Journal

Despite the evidence supporting deteriorating mental health because of temporomandibular disorders (TMDs) conditions, there is limited evidence of TMD patients' experience regarding how their mental health is affected by the disorders. As a sequence of these conditions, TMD patients suffer from physical and mental complications, not to mention the loss of food enjoyment. In this study, we aim to explore TMD patients' lived experiences who had changed their dietary habits concerning their mental health. Six participants were interviewed to answer open-ended questions during semi-structured interviews regarding their mental health experiences with TMD-related food routine changes. These interviews were held face-to-face …

Co-Production Of The Quality Of Patient-Centered Outcomes Research Partnerships Instrument For People With Mental Health Conditions, Karen L. Fortuna, Amanda Myers, Jessica Brooks, Caroline Collins-Pisano, Skyla Marceau, Sarah Pratt, Kathy Lyons, Robert Walker, Shavon Thompson, Kaycie Greene, Willie Pringle, Katina Carter

Patient Experience Journal

Mounting scientific evidence over the past decades in the field of psychiatry has shown community engagement in research produces more relevant research, increased uptake of research findings, and better clinical outcomes. Despite the need for the integration of community engagement methodologies into the scientific method, doctoral and master's level competencies in the field of psychiatry commonly do not include dedicated training or coursework on community engagement methodologies. Without appropriate training or research experience, attempts to facilitate community engagement are often ineffective and burdensome and leave stakeholders feeling disenfranchised. The goal of this study was to co-produce an instrument designed to …

The Experiences Of Rural British Columbians Accessing Surgical And Obstetrical Care, Aria Jazdarehee, Anshu Parajulee, Jude Kornelsen

Patient Experience Journal

The attrition of small volume surgical and maternity services in rural Canada over the past three decades has made access to these services especially challenging for rural citizens. While many of these closures have occurred as consequences of regionalization, a strategy to regionally centralize healthcare services, many studies investigating outcomes of regionalization have focused on costs and medical endpoints rather than the direct experiences of the rural patients affected. In this study, we aimed to understand and document the experiences of rural residents accessing procedural and maternity care both locally and away from home. This study is part of a …

Needle Phobia: How To Improve The Child's Experience During Blood Drawing, Maria D. Navarro, Helena Illera, Bonaventura Ruíz, Montserrat Naudó, Núria Serrallonga, Sonia Tordera, David Kornmehl, Lola Crevillén, Ana Bosque, David Nadal, Mercedes Jabalera

Patient Experience Journal

Pediatric diseases, pain and hospitalization have an important impact on children and their families. This is especially significant when considering common invasive procedures, such as blood drawing. The objectives of the study were to assess the experience of children and families during the blood drawing procedure and suggest methods for improvement. The study was conducted in a children’s hospital in Barcelona, Spain, between 2018 and 2020. A mix-method design or combination of qualitative and quantitative methodologies was developed. We carried out a search of the literature, a design thinking approach, and a survey. Results from the qualitative approach identified areas …

Surveying Pediatric Caregivers’ Readiness For Dyad Isolation In The Hospital During Covid-19, Shanqing Yin, Mei Zi Quek, Celestine Mun Ting Yeo, Sylvia Mun, Ronghui Li, Derrick Chan

Patient Experience Journal

The onset of any emerging outbreak is stressful for everyone. Singapore was one of many countries affected early by COVID-19. In response, many precautionary measures were quickly initiated, including the isolation of suspected COVID-19 pediatric cases, and their caregivers were isolated together with their hospitalized children as a result. Caregivers play an important role in facilitating their child’s health in the hospital. Rooming in with their children during hospitalization promotes the benefits of parental presence and reduces separation effects. However, sudden admission with strict movement restrictions poses stress to these caregivers too. This study ran a 3-part paper-based survey to …

Patients’ And Family Caregivers’ Perceptions Of Doctor-To-Doctor Advice And Electronic Referral Notifications In Alberta, Yong Li, Annabelle Wong

Patient Experience Journal

Effective communication between health professionals and patients is essential to patient safety and quality care. Primary care providers seeking specialist advice to manage patients’ conditions in the community has recently been adopted to improve timely access to specialty care and increase the efficacy of the referral process. To understand patients’ and family caregivers’ perceptions on doctor-to-doctor advice for non-urgent clinical questions and electronic referral communications with patients in Alberta, a mixed method online survey was conducted by Alberta Health Services’ Access Improvement team. A total of 1,422 patients and family caregivers living in Alberta were included in the quantitative and …

The Association Between An Established Chief Experience Officer Role And Hospital Patient Experience Scores, William Breen, Seongwon Choi, Kristina "Ria" Hearld, Stephen J. O'Connor, Edward Rafalski, Nancy Borkowski

Patient Experience Journal

The healthcare industry is currently reacting to multiple stakeholders demanding improvements to the patient experience. Some healthcare organizations are implementing new management structures, i.e., the role of Chief Experience Officer (CXO). This study statistically reviewed descriptors associated with hospitals that have and have not created and filled the role of CXO and, more importantly, measured the association between the CXO role and results of patients’ perceptions of their experience of care as measured by publicly reported Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) results. This study was conducted utilizing data gather on hospitals in three states, California, Florida, …

An Evidence-Based Tool (Pe For Ps) For Healthcare Managers To Assess Patient Engagement For Patient Safety In Healthcare Organizations, Ursulla Aho-Glele, Marie-Pascale Pomey, Maiana Regina Gomes De Sousa, Khayreddine Bouabida

Patient Experience Journal

In 1999, the Institute of Medicine had already warned that medical errors caused between 44,000 and 98,000 avoidable deaths per year in the United States. A similar situation was subsequently in 2000, documented in Canadian hospitals. According to a Canadian Patient Safety Institute report (2016), incidents in both acute and home care settings resulted in additional costs of $2.75 billion each year. Research suggests that Patient Engagement (PE) for Patient Safety (PS) can help address this issue. However, the use of PE in various strategies to promote PS has yet to be fully integrated across healthcare systems in OECD countries. …

No Visitors Allowed: How Health Systems Can Better Engage Patients’ Families During A Pandemic, Jennifer Schlimgen, Amy Frye

Patient Experience Journal

The ravages of COVID -19 and the no visitor policies that accompany it have forged a tectonic shift in the patient and family experience. This hit home for me with a recent family member health event and hospitalization, leading me to think “we HAVE to do better!” Why should hospitals and health systems care about family involvement during COVID-19?

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

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The Paradoxical Injunctions Of Partnership In Care: Patient Engagement And Partnership Between Issues And Challenges, Khayreddine Bouabida, Marie-Pascale Pomey, Genevieve Cyr, Ursulla Aho-Glele, Breitner Gomes Chaves

Patient Experience Journal

Partnership in care and patient engagement is an expanding approach and tremendously promising for improving the quality of healthcare services. However, the approach could be subject to many issues and challenges of various kinds. In this paper, we develop a reflection of the challenges and issues that the approach of patient engagement and partnership in care is facing. After a brief presentation of certain key concepts of partnership in care and patient engagement, we discuss in this paper the most worthy of consideration issues that we identified and classified as follows: Political, Financial, Organizational, Clinical, and Ethical Issues. We then …

The Use Of Organizational Assessments In Improving Patient And Staff Experiences In The Ambulatory Care Setting, Linda C. Lombardi, Andrew B. Wallach Md, Paula A. Wilson Mba

Patient Experience Journal

As the needs of patients evolve, healthcare organizations must diversify their approach to improving patient experience. Their programs should encompass the medical, mental, spiritual, and emotional needs of patients and their family members and the staff who care for patients. This case study examines the results of the evaluation to assess the effectiveness of organizational patient experience efforts. The Beryl Institute’s Experience Assessment was the evaluation tool administered and revealed the areas in which the organization was performing well and where improvements were needed. In collaboration with Ambulatory Care and Finance, the Office of Patient Experience targeted the Adult Primary …