Medicine and Health Sciences Commons^™

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, …

Safety Participation At The Direct Care Level: Results Of A Patient Questionnaire, Lenora Duhn, Nathaniel Gumapac, Jennifer Medves

Patient Experience Journal

Understanding how patients can be engaged in safety-related activities at the direct care level is of current relevance given global efforts to reduce harm in hospitals. As part of a multiphase study, including a descriptive, exploratory qualitative study (Duhn & Medves, 2018), patients were asked to respond to a brief questionnaire to quantify how they viewed their patient-reported safety participation behaviours while in hospital. This paper is a summary of those responses. The 8-item questionnaire was, in part, used to help address a secondary research question of the larger qualitative study, specifically: What behaviours do patients report in promoting their …

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 …

A Systems Thinking Framework To Improve Care Of The Terminally Ill: An Australian Case Study, Elizabeth Summerfield

Patient Experience Journal

This paper argues the value of systems thinking to patients, family members and medical practitioners in end-of-life care, particularly as a mechanism for considering when palliative care should be introduced as preferred treatment. It applies a well-established set of tenets in systems thinking retrospectively to a case study of patient care in Australia. This highlights how and where different decisions might have been made, based on a holistic consideration of the patient’s best interests. The case is written from the perspective of a family caregiver. It argues that early, deliberate conversation, framed by systems thinking tenets, can support the call …

Panda: A Case-Study Examining A Successful Audiology And Otology Patient And Public Involvement And Engagement Research Group, Laura Boddy, Richard Allen, Rosalyn Parker, Margaret E. O'Hara, Amy V. Gosling

Patient Experience Journal

There has been increasing involvement of patients and members of the public in research; however, case studies describing patient research groups with hearing loss are non-existent. Such case studies will be valuable, enabling evidence-based dialogue and promoting best practice in the engagement of patients, the public and researchers. This paper aims to discuss this practice. The absence of such dialogue may hinder initial efforts by researchers to realise the potential of Patient and Public Involvement. The objective of this study was to set up and run a patient and public involvement and engagement group in audiology research, use the lessons …

Addressing Social Disconnection Among Frequent Users Of Community Hospital Emergency Departments: A Statewide Implementation Evaluation, A. Rani Elwy, Elisa Koppelman, Victoria Parker, Chris Louis

Patient Experience Journal

We conducted a qualitative exploration and implementation evaluation of a Massachusetts policy initiative, the Community Hospital Acceleration, Revitalization, and Transformation (CHART) investment program, to examine how CHART innovations aimed at reducing unnecessary emergency department (ED) visits also addressed patients’ social disconnection problems according to a social connection framework (structural, functional, quality or multilevel). We performed interviews with 236 stakeholders (hospital managers, CHART providers, staff, and community partners) one-year post CHART implementation. Interviews were analyzed using a directed content analysis approach. Data were then mapped to levels of the social connection framework. Our results support that social disconnection, described as “loneliness” …

Management Of Frequent Ed Users By Community Paramedics Improves Patient Experiences And Reduces Ems Utilization, Oluwakemi Aiyedun Adio, Laura Ikuma, Sonja Wiley

Patient Experience Journal

This study examined a suburban emergency medical system (EMS)-led community paramedicine (CP) program in terms of adherence to protocol, patient-paramedic interactions, patient experience, and cost. Participants (n=57) are frequent emergency department (ED) users (≥ 4 ED visits/year), with a mean age of 59.8±17.6 years and have multiple chronic conditions. Of these, 36 completed a modified Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) survey at 3- and 6-months following program enrollment. The main outcome measures were adherence to intake goals; types, modes, and frequencies of CP interventions; CG-CAHPS patient experience scores; and cost savings. Cost savings compared …

Patient Experience In Outpatient Clinics: Does Appointment Time Impact Satisfaction?, Shikha Shah Modi, Jennifer B. Costigan, Mark Lemak, Sue Feldman

Patient Experience Journal

The objective of this study is to understand patient experience by appointment time by analyzing the Consumer Assessment of Hospital Provider and Systems (CAHPS) scores at a granular level across pre-determined time periods (AM and PM). This study utilized quantitative and qualitative methods. A deidentified secondary data set from the University of Alabama at Birmingham’s Press Ganey website was used to analyze the difference in CAHPS scores across AM and PM time periods. Unstructured survey responses were analyzed as a way to further enrich the quantitative findings. The data sample consisted of 821 responses from a dermatology clinic for the …

Patients’ Experience In Hong Kong Hospitals: A Comparison Between South Asian And Chinese People, Nimisha Vandan, Janet Yuen-Ha Wong Dr., Paul Siu-Fai Yip Chair Professor, Daniel Yee-Tak Fong Dr.

Patient Experience Journal

Patient experience in hospital is positively associated with both self-rated and objectively measured health outcomes. In many countries ethnic minority patients have more negative experience and bear a disproportionate burden of disease than their majority counterparts. However, hospital experience of ethnic minority patients in Asia is still unexplored. We aimed to explore the hospital experience of South Asian ethnic minority and compare that with local Chinese patients’ experience in Hong Kong. A cross-sectional study sample comprised of 783 participants (388 South Asian and 395 Chinese). Picker Patient Experience-15 (PPE-15) questionnaire was used for data collection. Simple and multiple regressions were …

Responsiveness Of Primary Health Care Services In Nigeria: The Patients’ Perspective, Daprim S. Ogaji, Chinedu B. Egu, Michael Nwakor-Osaji, Amala C. Smart, Emeka F. Anyiam, Faith C. Diorgu

Patient Experience Journal

Health system responsiveness reflects the extent national health systems meet the legitimate expectations of patients. This study assessed the responsiveness of primary health care services in Nigeria from the clients’ perspective. A cross-sectional survey of 379 participants were randomly selected from 7 centers from a sample frame of 20 primary healthcare centers. Descriptive results were presented in frequencies and percentages. The associations between the importance and performance ranking were examined using the Spearman’s ranked correlation coefficient. Multivariate logistic regression was used to identify predictors of responsiveness with p-values ≤ 0.05 considered statistically significant. There were equal proportion of respondents aged≥30 …

Patient Engagement In Action: Timing And Intensity Of Strategies Used To Engage Low Income Depressed Mothers Of Infants And Toddlers, Maureen J. Baker, Beth Perry Black, Linda S. Beeber

Patient Experience Journal

The purpose of this study was to illuminate the process of patient engagement and to determine how components of patient engagement were operationalized in the nurse-patient interpersonal relationship with low income, depressed mothers, a traditionally underserved population. Using a descriptive quantitative design, we examined how components of patient engagement were executed across three phases of the nurse-patient interpersonal relationship. We assessed for differences in engagement strategies used in different phases of the interpersonal relationship and with mothers with varying levels of engagement. Through this study, we observed that patient engagement has several dynamic components varying in intensity and frequency, depending …

Utilising Co-Design To Improve Outpatient Neurological Care In A Rural Setting, Andrew J. Butler, Sarah J. Prior, Sajina Mathew, David Carter, Brad F. Ellem

Patient Experience Journal

It has been identified that the physiotherapy needs of patients with central neurological conditions are specific and that this cohort are generally under-serviced in rural and remote areas in Australia. A quality improvement project was undertaken to improve patient experience in outpatient physiotherapy services in Tasmania, facilitating increased self-efficacy and quality of life, in patients with central chronic neurological conditions.. An experience-based co-design approach was utilised, involving past and current patients as well as physiotherapy staff in the project design, data collection, analysis and evaluation phases. The results suggest that timely access to care and goal achievement are common areas …

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 …

Enhancing Patient Involvement In Quality Improvement: How Complaint Managers See Their Roles And Limitations, Nathalie Clavel, Marie-Pascale Pomey

Patient Experience Journal

Patient involvement is a priority for healthcare organizations seeking to improve the quality of care and services. The contribution that complaint handling can make towards quality improvement has remained underexplored, while healthcare organizations are implementing strategies to effectively involve patients in quality improvement. We conducted a qualitative study to understand how complaint managers see their roles and limitations in enhancing patient involvement in quality improvement. A convenience sample of eleven complaint managers was selected from nine Canadian healthcare organizations with various annual volumes of complaints and situated in different settings (urban, rural, and semi-urban). The data were analyzed using a …

How Information Sharing Can Improve Patient And Family Experience In Critical Care: A Focus Group Study, Jayne Garner, Sioban Kelly, Girendra Sadera, Victoria Treadway

Patient Experience Journal

The experience of being in hospital critical care has major impacts upon the patient, their family and carers. This situation is likely to be stressful, fast changing and challenging for those involved. Crucial to this encounter are factors relating to information sharing between the clinical team, the patient, family and carers. Focus groups at a UK hospital site with former patients, their families and carers provides insight into their journey and the factors that influence this. Issues that emerged included the format of information, how and who delivered this, communication transition out of critical care and leaving hospital. While participants …

Consumer Experiences Of Chronic Obstructive Pulmonary Disease In Regional Australia: A Mixed Methods Study And Logic Model To Identify Consumer-Experience Mechanisms To Avoid Hospital And Enhance Outcomes, Anna Moran, Glenda Chapman, Ron Picard, Janet Chapman, Sally Squire, Guinever Threlkeld, Irene Blackberry

Patient Experience Journal

The objective of this study to explore consumer experiences of their care for Chronic Obstructive Pulmonary Disease (COPD) in a regional Australian hospital and to ascertain consumer identified contexts and mechanisms that can enhance consumer-experience outcomes. A sequential, explanatory mixed methods design was employed including a retrospective audit of COPD admissions and re-admissions and semi-structured interviews with a sample of consumers (n=12). Themes were synthesised using a realist framework and the Expanded Chronic Care Model to develop a logic model. Audit data identified above national average hospital admission rates and length of stay for treatment of COPD. Interview data revealed …

Living With Cardiovascular Disease (Cvd): Exploring The Biggest Challenges For People Affected By Cvd In The Uk, And Their Use (Or Not) Of Online Resources, Sarah-Ann Burger, Alan J. Poots, Anna Perris, Helen Crump, Helen Thorne, Sally Hughes, Jacob West

Patient Experience Journal

As death rates decrease, people affected by cardiovascular disease (CVD) continue to live with these diseases and the associated challenges, long-term. We aimed to identify the biggest challenges for people affected by CVD in the UK and explore the sources of support and information used to help manage conditions, to inform future service provision. An online questionnaire was sent and advertised to people over 16 years old in the UK self-identifying as affected by CVD (living with CVD, had risk factors, or a carer). There were 13,885 responses. The top five challenges were: feeling down, sad, or depressed; making changes …

Exploring Peer Mentoring In Pediatric Transition: Perspectives Of Different Stakeholders About Accompanying Patients In Gastroenterology, Guillaume Dumais-Lévesque, Marie-Pascale Pomey

Patient Experience Journal

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In …

Collecting Child-Patient Feedback: A Systematic Review On The Patient-Reported Outcome Measures For Hospitalized Children, Haneen Ali, Astin Cole, Adam Sienkiewicz, Steffie Rosene, Reagan Shaffer, Robert Thames

Patient Experience Journal

Accurate reporting of patient experiences is a crucial resource for hospitals engaged in patient-and-family-centered care (PFCC). However, studies suggest that most children do not respond to patient satisfaction surveys and are instead represented by their parents or guardians. This study reviewed instruments used to obtain feedback from children about their healthcare experiences for two purposes: 1) To understand the limitations of current tools and 2) To determine if creating a new instrument is necessary. A systematic review was performed on PubMed, Medline, CINAHL, and Web of Science to identify peer-reviewed questionnaires designed to collect children's healthcare experiences. Out of the …

Patient Reported Experience Of Inpatient Rehabilitation In Australia, Jacquelin T. Capell, Tara Alexander, Julie Pryor, Murray Fisher

Patient Experience Journal

While the value of patient reported experience is increasingly acknowledged, the measurement of rehabilitation-specific patient reported experiences is an area that is yet to attract a lot of attention. The aim of this study was to examine the patient-reported experience of person-centred inpatient rehabilitation. The study consisted of a multi-site cross sectional survey using the 33-item modified Client Centred Rehabilitation Questionnaire (CCRQ). A total of 408 participants were recruited from 20 inpatient rehabilitation facilities across Australia. Participants were in the final days of their inpatient rehabilitation episode when approached to complete the paper based modified CCRQ. Nineteen of the 33 …

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)

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Cancer Patient Perspectives During The Covid-19 Pandemic: A Thematic Analysis Of Cancer Blog Posts, Matthew A. Hintermayer, Mark Sorin, Joan M. Romero, Sarah M. Maritan, Owen J. Chen, Surabhi Rawal

Patient Experience Journal

The content of online cancer patient blogs has previously been analyzed to inform physicians about the cancer experience and patient concerns. The coronavirus disease 2019 (COVID-19) pandemic has greatly affected cancer patients due to their vulnerable health status, as well as changes in cancer testing and treatment. We sought to qualitatively describe the concerns and experiences expressed online by cancer patients, survivors, and family members in relation to COVID-19. 152 blog posts written by cancer patients, survivors, or family members, were selected using combined Boolean searches and snowball sampling. Reviewers extracted subthemes from blog posts using line-by-line text analysis until …

Solitude And Fear During The Great Coronavirus War, Chiara Catania, Ester Del Signore, Letizia Gianoncelli

Patient Experience Journal

When you get ill, the first thing that comes to your mind is, “Will I make it? Will I survive?". COVID19 has a major impact on mental health. A sadness that inundates us like a river in flood and which we cannot hold back. But the thing that torments is the solitude. Those who struggle towards recovery do it alone, and those who do not make it die alone. An emblematic experience of a sense of loneliness, depression and death during illness is deeply described. We tell how the love of family and friends can help to recover from the …