Health Services Research Commons^™

Understanding The Care Experiences And Support Needs Of Uk Adults Treated In Hospital For Meningitis, Harriet Hay, Amy Tallett Dr, Bec Aeddi, Beverley Corbett, Claire Donovan, Jane Blewitt, Juan Abad Madroñero

Patient Experience Journal

Background: Meningitis often results in ongoing and multifaceted after-effects, which can impact many aspects of people's lives, yet relatively little support and follow-up is offered. This study explored post-treatment care experiences of UK adults aged 16 and over following a recent stay in hospital for meningitis. Methods: A survey was designed to ask about hospital discharge, recovery, information provision and aftercare support. The research involved 5 semi-structured, in-depth interviews and a 15-participant online asynchronous focus group. The themes arising from this qualitative stage informed the development of a quantitative 32-item questionnaire which was hosted and promoted online between September 2022 …

Unveiling Patient Satisfaction: Exploring Demographics, Interactions, And Health-Seeking Behavior, Vanessa B. Crowther, Cassandra Shaw-Johnson, Robbya R. Green-Weir, Pia S. Woodley, Marilyn A. Weatherspoon, Errick D. Farmer, Arlesia L. Mathis

Patient Experience Journal

Objective: This study examined the social context of the patient visit (demographics, waiting room experience, patient-provider interaction) and their relationship to satisfaction with the quality of care when seeking medical treatment. It also examined satisfaction as a predictor variable for its effect on three patient behavioral outcomes. Methods: The study was implemented using a cross-sectional quantitative design among adults aged 18 and older. One hundred fifty-eight participants responded to the survey, and the final sample size was n = 147. We employed advanced data analysis, hierarchical regression, three-way ANOVA, linear regression, and logistic regression to examine four outcome variables. Results: …

A Case Study On The Impact Of An Adapted Community Jury In Shaping The Nutrition Standards For Hospital Menus In New South Wales Australia, Tara L. Dimopoulos-Bick, Melanie Schier, Kim Crawley, Kim Sutherland

Patient Experience Journal

Community juries are a form of deliberative democracy and can engage community groups in decision-making about healthcare and service delivery issues and priorities. They can provide insights and value-based perspectives from community groups and are particularly important in resolving perennial and complex system challenges. One such challenge is nutrition in hospitals–where there is a need to balance nutrition support, variety, taste and cost. The New South Wales (NSW) public health system in Australia operates more than 200 public hospitals. When revising the Nutrition Standards in 2021, stakeholders debated the upper limits of sodium (salt) and saturated fat in food products …

Factors Influencing Patient Satisfaction With Zambia's National Health Insurance Scheme: A Systematic Literature Review Using Empirical Evidence From Nigeria And Ghana, Wesley Kapaya Mwambazi, Abubaker Qutieshat

Patient Experience Journal

Universal Health Coverage (UHC) has become important for African nations as they strive to provide equitable healthcare access to all citizens. Implementing a successful National Health Insurance Scheme (NHIS) is crucial to achieving this goal. In pursuit of achieving UHC, Zambia launched the NHIS in 2019 with the ambitious goal of reaching 100% coverage by 2021. Some of those enrolled had reported varying levels of satisfaction with the NHIS services. Understanding patient satisfaction with NHIS-provided services is therefore essential for improving its implementation and enhancing NHIS patient satisfaction. Following PRISMA guidelines, a systematic review of empirical studies from Nigeria and …

Quality Of Outpatient Care In Lebanon: A Cross-Sectional Survey, Georges Choueiry, Anna Maria Henaine, Rayan Darwish, Pascale Salameh

Patient Experience Journal

Patient experience is an important driver of healthcare improvement. Yet, in Lebanon, there is a lack of studies focusing on the satisfaction of outpatients with healthcare quality. This study aims to assess the quality of outpatient care in Lebanon from the patient’s perspective and identify its determinants. A cross-sectional survey was administered, between December 2023 and January 2024, to 265 participants over 18 years old who consulted a healthcare provider, excluding dentists. We used linear regression to determine factors affecting consultation quality as perceived by the participants. Waiting time before consultations typically ranged from 5 to 15 minutes, the average …

An Exploratory Qualitative Study Of Perinatal Experiences In An Acute Setting During Early Phases Of The Covid-19 Pandemic, Sharon Hoosein, Pamela Winchester, Stephanie Babinski, Naomi Smith, Payalben Bhavsar, Susan Law

Patient Experience Journal

The COVID-19 pandemic was highly disruptive for people delivering babies in-hospital and for obstetrical healthcare professionals. The purpose of this study was to explore the experiences of people with or without COVID-19 giving birth in a community-based hospital to provide patient insight to obstetrical care providers regarding the services/policies used during the pandemic. Nine interviews were conducted with participants within six months of giving birth in-hospital – four who tested positive for COVID-19 and five who tested negative. Seven themes were identified in the analysis: conflicting emotions; experiences of COVID-related protocols; altered experiences of pregnancy and birth; other aspects of …

Co-Developing A Paediatric Patient Reported Experience Measure: The Perspectives Of Children And Young People, Karlen R. Barr, Jessica Nikolovski, Les White, Sarah Elliott, Lynn Mccartney, Claire Treadgold, Barb Vernon, James R. John, Valsamma Eapen

Patient Experience Journal

NOTE: A minor correction was made to this article. It was revised on August 6, 2025.

Paediatric Patient Reported Experience Measures (PREMs) are tools that capture what children and young people (CYP) value in their healthcare and promote their involvement in clinical decision-making. A standardised paediatric PREM could improve quality of care for CYP across hospital settings, but CYP are rarely included in the development of PREMs. This study aimed to explore CYP's perspectives regarding their experiences of hospitals as the initial stage of developing the first self-reported paediatric PREM for use in Australia, including the perspectives of vulnerable populations. …

Research Imitates Life: Researching Within Your Lived Experience, Bethany Donaghy, Delane Linkiewich

Patient Experience Journal

This personal narrative article seeks to bring awareness to and provide an overview of the various aspects that come with being a lived experience researcher including the host of benefits and challenges that come with conducting research within one's own area of lived experience. Throughout this narrative, we (Bethany Donaghy, an autistic person, and Delane Linkiewich a person living with chronic pain) share our perspectives on what it is like to be lived experience researchers. Our narratives discuss how the many identities we hold both improve the impact and relevance of our research while also posing challenges for us like …

Refining Successful Implementation Strategies For The Surgical Safety Checklist In High-Income Contexts: Results Of An International Mixed Methods Study, Meagan E. Elam, Christopher J. Louis, Jonathan Woodson, Nathan Turley, Denisa Urban, Mary E. Brindle, Jacey A. Greece

Patient Experience Journal

The WHO Surgical Safety Checklist (SSC) continues to show inconsistent success in reducing surgical complications in high-income settings. Previous implementation research identified potential barriers and facilitators to success, but it primarily consists of qualitative studies with small sample sizes in limited geographic areas. We conducted a multi-country mixed-methods study of barriers and facilitators to SSC implementation to better inform policies and practices for improving SSC buy-in and use to maximize its impact. This convergent parallel mixed-methods study utilized survey and interview data from surgical team members practicing in five countries. Survey data were analyzed using χ² analysis or Fisher’s …

Psychometric Properties Of The Impact Index In Patients With Chronic Conditions, Kd Valentine, Suzanne Brodney, Carol Cosenza, J. Lee Hargraves, Karen Sepucha, Susan Edgman-Levitan, Michael Barry

Patient Experience Journal

The purpose of this paper was to extend the generalizability of the patient-reported Impact Index by assessing convergent validity in patients with common chronic conditions. We conducted a cross-sectional survey of 1,000 English-speaking patients aged 21 and older who visited their provider in the past 6 months and were included in one or more of a hospital’s chronic condition registries. Patients completed a survey that included the Impact Index (4-item measure of how impacted a patient is by their health condition: range 0-12, higher score indicating greater negative impact on quality of life), overall health, and self-report of diagnosis of …

‘Making It Meaningful’: Co-Designing An Intervention To Improve Medication Safety For People From Culturally And Linguistically Diverse Backgrounds Accessing Cancer Services., Ashfaq Chauhan, Bronwyn Newman, Elsa Roberto, Ramesh Lahiru Walpola, Holly Seale, Melvin Chin, Reema Harrison

Patient Experience Journal

This study reports on the process of using an adapted Experienced-Based Co-Design (EBCD) conducted with culturally and linguistically diverse (CALD) consumers and cancer service staff to co-design the novel ‘Making it Meaningful’(MiM) instrument at a cancer service in Australia. Multi-source experiential and contextual information was gathered in phase 1 of the co-design and this evidence, coupled with knowledge gathered via a feedback event was used to inform three co-design workshops in phase 2. A series of meetings were conducted prior to and in between the workshops. Theory was progressively integrated into the workshop content. Two Mandarin speaking CALD consumers and …

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 …

Digital Patient Engagement At A Perioperative Surgical Home Implemented Community Hospital, Srinivasan Sridhar, Amy Mount Hunter, Bernadette Mccrory

Patient Experience Journal

Patients in rural areas typically require more perioperative ‘optimization’ for surgery. The rural healthcare systems often overwhelmed with coordinating perioperative services and deliver less than optimal surgical outcomes. This is due to limited supporting microsystems and ability to effectively engage and track patients over the 120-day perioperative period to limit post-surgical complications. The study assessed longitudinal patient engagement within a newly established Perioperative Surgical Home (PSH) at a rural community hospital serving 10+ surrounding counties to identify barriers and best practices for engagement. A digital patient engagement platform was implemented and used to assess longitudinal patient outcomes and engagement from …

Living With Covid-19 In The Community During The First Wave Of The Pandemic: Lessons From Patients For Healthcare Providers And Policy Makers, Linda Rozmovits, Michelle Marcinow, Ilja Ormel, Terence Tang, Elizabeth Mansfield, Kerry Kuluski, Seema Marwaha, Susan Law Dr

Patient Experience Journal

This qualitative descriptive study explores patients’ experiences of living with COVID-19, in the community, during the early stages of the pandemic. Between October 2020 and April 2021, fifteen semi-structured, video-recorded interviews were conducted, via Zoom, with participants in five Canadian provinces. Participants self-identified as having had a confirmed or suspected case of COVID-19. The constant comparative method was used to produce a thematic analysis of findings. Key findings include 1) PCR tests were not widely available in Canada, during the first wave, so many participants lacked a confirmed diagnosis and, subsequently, encountered challenges accessing specialist medical care; 2) Rapidly changing …

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 …

Public Satisfaction With Covid-19 Vaccination Program In Saudi Arabia, Muhammad Waseem Shahzad, Adel Al-Shabaan, Ammar Mattar, Bilal Salameh, Eman M. Alturaiki, Waleed A. Alqarni, Khalid A. Alharbi, Turki M. Alhumaidany

Patient Experience Journal

The challenges posed by the ongoing COVID-19 pandemic have required the introduction of new care delivery models and procedures. For the foreseeable future, vaccine administration will be a key part of the patient experience journey. It is important therefore to understand and evaluate experiences of individuals taking the vaccination, an area which requires considerable attention. To address this, the COVID-19 Vaccination Satisfaction survey was developed and administered at several healthcare facilities across Saudi Arabia. Between January 2021 and end of December 2021, a total of 1,699,177 completed surveys were collected. The survey results suggest high satisfaction among participants taking the …

Going From An Academic Medical Center To A Community Hospital: Patient Experiences With Transfers, Alexander Kazberouk, Nicole Boyd, Sandra Oreper, Michael Chang, James D. Harrison, Priya A. Prasad, Ari Hoffman

Patient Experience Journal

Academic medical centers (AMCs) often operate at or near full capacity, which leads to delays in care while smaller community hospitals may have excess capacity. To address this issue and to match patient needs to care acuity, patients may be transferred from an AMC emergency department for direct admission to a community hospital. We aimed to explore the experiences and perspectives of patients who were transferred. We randomly selected patients transferred between February 2019 and February 2020. We conducted structured thirty-minute interviews containing fixed response and open-ended questions focusing on the transfer rationale and experience, care quality, and patient financial …

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 …

Patient Experience Of The Electronic Health Record (Ehr) In A Maternity Unit In Ireland, Joye Mckernan, Paul Corcoran Dr, Richard A. Greene Professor

Patient Experience Journal

The introduction of the Electronic Health Records (EHRs) for maternity services in Ireland provided an opportunity to examine patient satisfaction and to examine what patients require from an Electronic Health Record. The implementation of the EHR in Ireland started in 2016, and at present, four of the 19 maternity units are digital. Patients at antenatal booking visits in an Irish maternity unit were invited to participate in the project. The invite was taken up by 201 women. The survey took 10-15 minutes to complete. The survey was conducted nine months following the implementation of the MN-CMS. The survey was anonymous …

Development Of An Experienced Quality Measure For Clients, Informal And Formal Caregivers In Home Care In The Netherlands: A Participatory Action Research, Roy Haex, Theresa Thoma-Lürken Phd, Anna J.H.M. Beurskens Phd, Sandra M.G. Zwakhalen Phd, Rn

Patient Experience Journal

To optimise home care provision and to identify potential improvements in the care process, it is important to gain insight into the care experiences that influence care quality. The aim was to develop a qualitative experienced quality measure for home care in The Netherlands, facilitating conversations between clients and caregivers in generating possible points of improvement for the primary care process. A participatory action research design to develop the measure following three iterative cycles, using various data sources in evaluating requirements related to the goal, feasibility in care setting, and usability in the care process. The final design comprises an …

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 …

Current Prom And Prem Use In Health System Performance Measurement: Still A Way To Go, Claudia Bull, Emily J. Callander

Patient Experience Journal

There is a growing impetus to “measure what matters” to enable health systems to optimise value-based, person-centred healthcare. This paper describes the critical importance of patient-reported outcome and experience measures (PROMs and PREMs) in this pursuit and provides an in-depth overview of how PROM and PREM programs differ between England, the United States, and Australia. A comprehensive timeline of PROM, PREM, legislation/policy, and value-based purchasing (pay-for-performance) program implementation accompanies this discussion. Importantly, this paper highlights disparities between these nations’ PROMs and PREMs programs, evidencing that we still have a way to go towards equal health system performance measurement globally.

Experience …

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 …