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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. 2020 The University of Hong Kong

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 2020 Africa Centre for Public Health and Toxicological Research, University of Port Harcourt

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 2020 University of North Carolina at Chapel Hill

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 2020 Tasmanian Health Service

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 2020 Eastern International College

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 2020 McGill University

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 2020 Edge Hill University

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 2020 University of Melbourne / Albury Wodonga Health

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 2020 Picker Institute Europe

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 2020 Laval University, Quebec city

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 2020 Auburn University

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 2020 Australian Health Services Research Institute,University of Wollongong, Wollongong NSW Australia

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 2020 East Carolina University Brody School of Medicine

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)


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 2020 McGill University

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 2020 1Division of Thoracic Oncology, IEO, European Institute of Oncology, IRCCS, Italy, Via Ripamonti 435 Milan Italy

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 …


Patient-Centric Culture And Implications For Patient Engagement During The Covid-19 Pandemic, Umair Majid, Aghna Wasim 2020 University of Toronto

Patient-Centric Culture And Implications For Patient Engagement During The Covid-19 Pandemic, Umair Majid, Aghna Wasim

Patient Experience Journal

Some consider patient engagement as the “holy grail” of healthcare because of its potential to revolutionize how we view and address health system problems. Multiple efforts around the world have attempted to cultivate a patient-centric culture whereby health services are grounded by the needs and preferences of patients. Recently, health service organizations are engaging patients in a wide array of activities including research and quality improvement. There are many ethical imperatives and economic and social benefits to patient engagement such as higher patient self-esteem and trust, and a more cost-efficient system. However, these benefits have been realized in some contexts …


Moving Forward To The Future Of Healthcare, Jason A. Wolf 2020 The Beryl Institute / Patient Experience Journal

Moving Forward To The Future Of Healthcare, Jason A. Wolf

Patient Experience Journal

To say this moment in our shared global history feels shaky or uncertain for so many is not a statement of despair. Rather, it is acknowledging a reality through which we can best act and hopefully step through. As of the time this editorial will publish, well over 50 million cases of COVID-19 will have been reported. This is a reality all of humanity is sharing together; it is a challenge that healthcare is being called on to tackle. The work of people around the world to care for the sick, to find the right treatments and vaccines and the …


Substance Use Among Rural And Urban Youth And Young Adults, Jennifer D. Lenardson MHS, Nathan Paluso MPH, Erika C. Ziller PhD 2020 University of Southern Maine, Maine Rural Health Research Center

Substance Use Among Rural And Urban Youth And Young Adults, Jennifer D. Lenardson Mhs, Nathan Paluso Mph, Erika C. Ziller Phd

Mental Health / Substance Use Disorders

Rural youth and young adults have historically had higher use rates of alcohol and other substances than their urban counterparts. Recent research suggests that rates of youth and young adult alcohol and other substance use have declined over the past two decades, but we have limited knowledge of whether and how current rural and urban substance use patterns may differ. As national substance use rates decline, it is important to re-assess differences in use among rural versus urban youth and young adults. This study uses data from the National Survey of Drug Use and Health (NSDUH) to examine rural-urban differences …


Using Participatory Mapping To Diagnose Upstream Determinants Of Health And Prescribe Downstream Policy-Based Interventions, Jason A. Douglas, Andrew M. Subica, Laresha Franks, Gilbert Johnson, Carlos Leon, Sandra Villanueva, Cheryl T. Grills 2020 Chapman University

Using Participatory Mapping To Diagnose Upstream Determinants Of Health And Prescribe Downstream Policy-Based Interventions, Jason A. Douglas, Andrew M. Subica, Laresha Franks, Gilbert Johnson, Carlos Leon, Sandra Villanueva, Cheryl T. Grills

Health Sciences and Kinesiology Faculty Articles

Participatory mapping is a powerful methodology for working with community residents to examine social and environmental determinants of public health disparities. However, this empowering methodology has only been applied sparingly in public health research and practice, with limited examples in the literature. To address this literature gap, we 1) review participatory mapping approaches that may be applied to exploring place-based factors that affect community health, and 2) present a mixed-methods participatory geographic information systems (PGIS) examination of neighborhood assets (eg, streetlights) and challenges (eg, spaces of crime and violence) related to access to public parks in South Los Angeles, California. …


Risky Substance Use Behaviors Among Adolescents Residing In Non-Metropolitan And Metropolitan Counties In The United States, 2017-2018, Tyrone F. Borders, Michael D. Singleton, Katherine Youngen 2020 University of Kentucky

Risky Substance Use Behaviors Among Adolescents Residing In Non-Metropolitan And Metropolitan Counties In The United States, 2017-2018, Tyrone F. Borders, Michael D. Singleton, Katherine Youngen

Rural & Underserved Health Research Center Publications

Overview of Key Findings

Tobacco Use. The prevalence of any past year tobacco use was significantly higher among non-metropolitan than metropolitan adolescents (13.9% vs. 8.3%). Daily cigarette use in the past 30 days was more than 3 times more prevalent among non-metropolitan than metropolitan adolescents (1.0% vs. 0.3%) and the difference was also statistically significant.

Alcohol Use. Alcohol was the most commonly used substance among both non-metropolitan and metropolitan adolescents, although the differences in prevalence rates for past year and past 30-day alcohol use were not statistically significant. In the past year, 21.8% of non-metropolitan and 21.7% of …


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