Journal Article
14 November 2024
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Volume 11, Issue 3 (2024)Read More
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Journal Article
29 April 2024
The Evolution of Patient Experience: From Holistic Care to Human Experience
Patient experience has evolved as a critical concept and outcome in health systems internationally. Evolving from consumer-led movements, coupled with shifts in the positioning of patients among clinical professions, the global focus on patient experience is now evident in nationally mandated measurement tools, the creation of dedicated institutional leadership roles, and outlets such as the Patient Experience Journal. By critically analysing the pivotal factors and milestones that have shaped its evolution throughout healthcare history, this review provides an in-depth exploration of the evolution of patient experience. In doing so, the review provides a critical analysis of the application of patient experience in health systems and future directions required to drive change for improvement.Current Issue - Volume 11, Issue 3
Editorial14 November 2024
Why Human Experience Matters
As we close the 11th volume of Patient Experience Journal and a pivotal year for experience efforts globally, it provides a moment of pause, of reflection, and an opportunity to return to purpose. As a publication accessed in over 220 countries and territories around the world, I am heartened by the fact that what is shared on these pages moves you. That what our amazing authors contribute here truly matters. This issue, with its 24 insightful articles, brings our total publication count to 570 articles. These pieces have informed us, pushed our thinking, and challenged our beliefs. This is the essence of our motto “Evidence. Innovation. Patient Forward.” It reflects our commitment to seek answers, push boundaries, and truly listen to and act on what matters to those in healthcare. I have long shared the idea that in healthcare we are “human beings caring for human beings.” I fundamentally stand by this idea, I am guided by it personally, and we have built our community on this premise and the values that comprise it. At the heart of this idea is a fundamental premise, human experience matters, and it may matter now more than ever. If we can push forward together as human beings caring for human beings, we will truly be unstoppable.Journal Article14 November 2024
Patient Experience (PX) Giants: Pioneers and the Path Forward
This commentary pays tribute to the foundational figures in patient experience (PX) scholarship, acknowledging the "PX Giants" whose contributions have established and expanded the field's core principles. Building upon the analysis in Foundational PX, which identified highly cited works, this piece honors individual contributors who have contributed to the scholarly foundation of PX. It highlights the cumulative impact of both frequently cited and consistently productive scholars, underscoring their essential role in shaping patient-centered care. PX Giants have pioneered frameworks on diverse aspects of PX, such as patient-provider communication, care disparities, and the integration of patient perspectives into quality assessments. Through global collaborations, novel measurement tools, and strategic insights, these leaders have elevated PX as a central healthcare priority. Looking forward, the commentary emphasizes the need for emerging PX leaders to address complex challenges, including workforce shortages, technological advancements, and political and economic pressures. The digital transformation in healthcare, while promising improved access and personalization, poses potential risks to patient-centeredness, necessitating vigilance in maintaining empathetic, human-centered care. Additionally, ensuring equitable PX across fragmented systems requires culturally competent and accessible care models. Through cross-disciplinary collaboration and continued advocacy, the next generation of PX scholars and practitioners will advance this vital work, adapting PX to meet the needs of diverse patient populations and evolving healthcare landscapes.Research14 November 2024
A Quality Improvement Initiative Using Discharge Education Videos to Improve Communication with Families in a Pediatric Urgent Care
Introduction: Effective discharge communication, often given in verbal and written form, during pediatric acute healthcare visits positively impacts caregiver satisfaction and competency in providing at-home care. Institutions are beginning to incorporate evidence-based, and standardized multimedia education to try to further improve these outcomes. Methods: For this QI initiative, educational videos were created and shown to families prior to discharge from a pediatric urgent care. PDSA cycles focused on development of an electronic medical record (EMR) order to provide video education, a best practice alert regarding this order, and recurrent staff education. The primary outcome measure was the percentage of families who responded favorably on a post-visit survey question regarding being given adequate information about at-home care. Process measures included EMR order use and attachment of updated written discharge instructions. Results: Of all eligible encounters who responded to the survey, 69.7\% of those shown a video favorably answered the target question, compared to 66.8\% of those who were not shown a video. The response rate for this question was 9.1\%. 28\% of patients had an EMR order placed for video education; 35\% were discharged home with updated written discharge instructions. Conclusions: There is a positive effect from integrating standardized videos into discharge education on caregiver satisfaction with information provided during an acute care visit. In this study, this effect is likely underrepresented due to the inherent imperfections of a voluntary survey-based outcome measure. Future PDSA cycles will aim to implement interventions with higher levels of reliability.Journal Article14 November 2024
The "ableism'' behind Mental Health Professionals' Perceptions of Support
This paper presents the personal narrative of the author, an individual who has experienced personal and clinical recovery from mental health difficulties. Diagnosed with a mental disorder (NEUROTIC; ICD-10) during my university years, I endured cognitive dysfunction, panic disorder, derangement of ego, suicidal ideation, and depression. Despite these challenges, I have actively engaged in social skills training, supervised virtual reality content, led self-help groups, and published papers on my experiences. I will discuss my own experiences as an expert-by-experience and describe the tendencies of professional ableism consciousness that I encountered during my journey of recovery. Through the lens of my recovery journey, I describe the difference between professionals with a strong ableism mindset and those with a weak ableism mindset. To mitigate ableism, mental health professionals must confront their own biases, as seen in training analyses. They also require an enhanced understanding of recovery and a shift toward recovery orientation. My story underscores the importance of a cautious and humble approach that does not evaluate human superiority or inferiority in the context of ableism. I hope that the readers of this paper will be inspired to think about professional ableism and move in the direction of shaping public opinion toward a decrease in ableism.Research14 November 2024
Experiences of using Electronic Medical Records among Patients from Ethnic Minority Backgrounds: A Rapid Review
This study explores the experiences of individuals from ethnic minority backgrounds using electronic medical records (EMRs) and identifies strategies to improve the inclusivity and usability of EMRs, aiming to reduce the digital divide in their access and use. A rapid review of the literature was conducted using Medline, Embase, and CINAHL databases to identify relevant studies published between 2010 and November 2023, with the assistance of a medical librarian. A total of 44 studies were included in the review, revealing significant disparities in EMR adoption and utilization among ethnic minority groups. Three key themes of inequality were identified: presentation of EMR and patient portal options, the registration and activation process, and the actual use of patient portals. While the review considered all elements of EMR systems, most published research focused specifically on patient portals. To address these disparities, a multifaceted approach is necessary, one that acknowledges linguistic diversity, enhances digital health literacy, and actively incorporates feedback from ethnic minority communities to improve EMR engagement.Research14 November 2024
Patient Engagement and Co-creation in Healthcare Services: A Scoping Review
Objective: The objective of this review was to find literature related to the concepts of patient engagement and co-creation in healthcare services and identify models and/or frameworks that combined these concepts. Methods: We developed the eligibility criteria using the Population-Concept-Context framework applicable to studies with population of patients exploring the concepts of engagement and co-creation in the context of healthcare services. The search was conducted in PubMed, CINAHL, Cochrane, APA PsycINFO, and Ovid MEDLINE. We searched for articles in English with no search limitations on publication dates. Reviewers screened abstracts and full texts to identify articles for data extraction. We developed, piloted, and implemented a data extraction tool to extract key information needed to answer the research questions. Results: Our search yielded 3632 references. Fifty-five studies were included in this review with 26 studies in patient engagement and 29 studies in co-creation. Many identified studies explored the field of healthcare services research. We identified the common principles of patient engagement and co-creation along with the existing models and frameworks that were either applied to guide these studies or proposed through these studies. Conclusion: Though there were several models describing different components and phases of patient engagement and co-creation concepts, there was a lack of unified, domain-agnostic models that described characteristics of these combined concepts. This review suggested the need for an innovative conceptual model that would bring together the concepts of co-creation and the principles of patient engagement applicable to various activities in healthcare such as research, implementation, and evaluation.Research14 November 2024
Laboratory Literacy: Surveying Lab Result Interpretations of a Local Patient Population
A patient's independent interpretation of their medical laboratory data has become an unspoken prerequisite in the current age of medicine. In the outpatient setting, it is anecdotally commonplace for patients to receive their lab results before their physicians, resulting in patients often relying on self-interpretations of their results. This study analyzed the degree to which patients are comfortable interpreting lab results and sought to shed light on the question: How are patients interpreting their laboratory reports? A survey was constructed to include the items from a validated health literacy screening tool, followed by items inquiring about the respondent's experience and comfort interpreting medical lab reports. The survey then contained five sets of two questions, each asking the respondent to interpret a mock-up laboratory report associated with a disease state and to report their level of confidence in their answer. The survey was distributed to 173 patient advisors, of which 61 completed the survey. There was a statistically significant association between one's health literacy and one's confidence in interpreting lab results (p < 0.001). Additionally, respondents with a chronic disease were more confident in interpreting a within-range HbA1c compared to respondents without chronic disease (p < 0.05), although similar comparisons for other lab result types failed to yield statistically significant differences. This study detailed the lessons learned in conducting a health and laboratory literacy survey, a preliminary step towards developing a working knowledge of how patients relate to their lab results.Research14 November 2024
Quality of Outpatient Care in Lebanon: A Cross-Sectional Survey
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 consultation duration was 20.8 minutes, and the average quality rating of consultations was 8.3/10. Overall, patients expressed satisfaction with the waiting time, physician and staff behavior, outcomes, and instructions received. Up to 40% of the variance in perceived quality could be attributed to physician-modifiable factors, such as friendliness (β = 0.5, p = 0.53), listening skills (β = 0.7, p = 0.14), attentiveness and effort (β = 0.9, p = 0.04), patient comfort (β = 2.3, p < 0.01) and privacy (β = -0.1, p = 0.82), acceptable consultation duration (β = 0.6, p = 0.12), fewer interruptions (β = 0.7, p = 0.03), better appointment scheduling (β = -0.1, p = 0.8), and less patient waiting time (β = 0.7, p < 0.01). In conclusion, Lebanon has a high standard of outpatient care that is mainly influenced by the doctor-patient relationship rather than financial incentives.Research14 November 2024
Patients' Perceptions: A Group Differences Study Twelve Months Before and Twelve Months During a Worldwide Pandemic
Objective: The COVID-19 pandemic subjected healthcare systems' to decreasing operational margins, enhanced regulatory scrutiny, and challenges related to patients' expectations. Until now, there was a lack of empirical evidence studying patients' perceptions prior to versus deep immersion into the pandemic. Methods: This quantitative non-experimental ex post facto causal-comparative study examined if and to what extent there were significant differences in patients' perceptions of the nurses' communications, doctors' communications, overall hospital rating, and willingness to recommend before versus during the COVID-19 pandemic for HCAHPS participating hospitals in California. The final sample size was 292 facilities grouped by two identically matched hospital entity composition for this within-subject group differences analysis. Results: The Wilcoxon Signed-Rank Test revealed statistically significant differences existed between the pre-COVID-19 group and the deeply immersed group on all four research questions: RQ1 Z = 8.66, p < .001; RQ2 Z = 10.089, p < .001; RQ3 Z = 8.44, p < .001; RQ4 Z = 8.81, p < .001. Rejection of the null hypothesis was warranted for all RQs. Conclusions: The importance of this research was applicable to the future of patient safety and quality of care for stakeholders at all levels, patients, family members, healthcare providers, administrators, payer organizations, and regulatory bodies. Whether a payer or health care entity, professionals who utilize HCAHPS results can benefit from this study. It may be time to invest in a recalibration of the HCAHPS associated financial incentives and penalties.Research14 November 2024
Experiences of Psychosocial Support in Group Rehabilitation Interventions from Adults with Chronic Conditions – A Qualitative Systematic Review
Aims and objectives: Psychosocial support is essential in group rehabilitation interventions aiming at supporting adaptation to chronic illness and disability. Aim was to synthesize qualitative evidence on how adults with chronic conditions experience psychosocial support in group rehabilitation interventions. Materials and Methods: Four databases (CINAHL, Medic, Pubmed, Scopus) were searched for qualitative studies published between 2009-2022. Study selection and critical appraisal were independently performed by two authors using the JBI Critical Appraisal Checklist. Study selection and critical appraisal were independently performed by two authors. Data were synthesized through inductive content analysis. Results: The findings from nine studies were synthesized into 105 sub-categories, 15 categories and to six main categories: 1) Management of life; 2) Reflective communication; 3) Group process; 4) Invaluable peer support; 5) Professional as a competent human trainer; and 6) Process of relief. Conclusion: Psychosocial support in group rehabilitation interventions can provide adequate social support and a basis for self-management. Both healthcare professionals and peers have invaluable roles in helping patients with chronic conditions adapt to their life situation. Interventions should facilitate knowledge sharing and help patients take responsibility for self-management. Furthermore, participants should be able to choose the topics of the program. Healthcare professionals have an important role in initiating conversations about topics which may be taboo. Professionals should recognize participants’ individualized needs for information and support, and foster group dynamics by supporting open communication and reflection.Journal Article14 November 2024
Trust Remains the Foundation of my Practice
Navigating healthcare while managing the complexities of disease, especially in elderly individuals, is challenging for both patients and their families. Physicians play a crucial role as pathfinders in this journey. However, physicians often experience burnout when dealing with patients and families facing complex illnesses. This narrative highlights the characteristics that enable physicians to effectively negotiate with such patients. It describes the experience of an elderly patient during the pandemic, suffering from severe disease complications, and illustrates the uncertainties and fears that families face, feeling as though they are lost in a maze. The physician's role in guiding the patient and family through trust-building is key, achieved through active listening, patience, compassion, availability, and competence. The narrative also emphasizes the importance of a thorough physical examination, which reassures patients that decisions are made after careful evaluation. The first visit of the patient allows the best moment to initially build the trust as patients initially come with recommendation and taking advantage of that initial trust helps to build the trust eventually. Once trust is established, it strengthens the physician-patient relationship, facilitating more straightforward decision-making with families when necessary. This not only reassures patients’ families that the health of their loved ones is valued, but also reduces physician burnout by simplifying the negotiation process.Research14 November 2024
Co-developing a Paediatric Patient Reported Experience Measure: The Perspectives of Children and Young People
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. Individual interviews were conducted with 55 CYP from a diverse range of sociocultural backgrounds, across six Australian hospitals. Interviews were conducted by `Captain Starlight', professional performers who engage with children and positively impact their hospital experience. Reflexive thematic analysis was used to analyse interview responses. CYP favoured hospital experiences where they were included in decision making, had positive relationships with hospital staff, and had effective care and pain management. CYP also discussed the importance of interacting with family and friends, having fun activities, and having a comfortable hospital environment including privacy, decorations, and familiar food. Many CYP indicated that they preferred to provide feedback to the hospital verbally. The needs of CYP must be at the forefront of developing paediatric PREMs. Our co-design approach identified key components of proposed paediatric PREMs. The next stages will be to determine age-group specific question sets, followed by their piloting and validation. Future research will be required to evaluate and monitor the effectiveness of these PREMs.Journal Article14 November 2024
A Case Study on the Impact of an Adapted Community Jury in Shaping the Nutrition Standards for Hospital Menus in New South Wales Australia
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 on hospital menus. Our case study describes how a jury of 12 community members received expert-informed information and deliberated on various evidence sources to reach a verdict, recommending that there should be upper limits on sodium (salt) and saturated fat in food products on hospital menus. It offers practical suggestions on adapting a community jury approach to strengthen patient, family, and community engagement across healthcare systems.Research14 November 2024
Post-Pandemic Needs of Unpaid Family and Friend Caregivers to Effectively Continue Caregiving Duties in one Northern Ontario Health Authority
The Covid-19 pandemic had a significant impact on the support networks for older adults and caregivers as health and social care systems were forced to dramatically change the ways patients and clients interacted with providers, services, and programs. In Northern Ontario, caregivers are older, caring in more intense situations, more likely to be caring for multiple care recipients simultaneously and less likely to be in contact with health professionals. This research sought to explore the post-pandemic needs of caregivers in a Northern Ontario health catchment to better understand the needed supports. Using a collaborative and co-design approach with caregiver advisors within a qualitative description design, seven focus groups were conducted with 36 participants in total in February 2023. Reflexive thematic analysis was used to generate five themes from the transcripts: caregivers as the invisible but vital backbone of health and social care; amplified distress: navigating overwhelming demands; family fault lines exposed; contextualized care: the need for personalized supports; and empowering caregivers through training and supports. Our findings suggest that the pandemic significantly impacted the already vulnerable support networks for older adults and caregivers, as health and social care systems had to adapt to new restrictions and limitations. Caregivers were forced to take on additional responsibilities and cope with social isolation, leading to detrimental effects on their mental health and overall well-being.Research14 November 2024
Factors Influencing Patient Satisfaction with Zambia's National Health Insurance Scheme: A Systematic Literature Review using Empirical Evidence from Nigeria and Ghana
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 Ghana NHIS on patient satisfaction with NHIS-provided services was conducted to understand its factors. Searches on PubMed and Google Scholar identified 108 papers, of which 20 English peer-reviewed articles published between 2011 and 2023 from Nigeria and Ghana were selected for analysis providing insights into factors influencing NHIS patient satisfaction. These factors were analysed, categorised, and consolidated into shared patterns. Income, age, and education were common factors identified at the socio-demographic level. At the health facility level, waiting times, quality of care, staff attitude, dispensary (drugs), diagnostic services, and out-of-pocket were predominant factors identified. At an individual level, NHIS knowledge was a common factor. Finally, at the health insurance provider level, communication and feedback were a predominant factor. Strategies to increase NHIS patient satisfaction include tailoring NHIS programs to social demographics, reducing wait times, increasing drug supply, improving diagnostics services, providing healthcare staff training, educating patients, enhancing communication and feedback, and promoting NHIS literacy.Research14 November 2024
Patient Safety Culture Among Healthcare Settings in Low and Middle-Income Countries: A Systematic Review and Meta-Analysis
Ensuring patient safety is a crucial element in providing high-quality healthcare services. Therefore, this study aimed to assess the current state of patient safety culture in healthcare settings within low- and middle-income countries. A thorough search was conducted across multiple databases, including Science Direct, Scopus, Google Scholar, EMBASE, and PubMed. Data extraction was carried out using Microsoft Excel, and statistical analysis was performed using STATA software (version 14). To evaluate publication bias, methods such as Egger's regression tests, rank tests, and forest plots were utilized. The I2 statistic was used to assess heterogeneity, followed by an overall estimated analysis. Additionally, subgroup analyses were performed based on sample size and type of healthcare. After reviewing 1,143 articles, 21 publications involving 17,782 research participants were selected. The results indicated that the prevalence of patient safety culture in healthcare facilities in low- and middle-income countries was 48.25 percent (95 percent CI: 41.26, 55.24), with an I2 value of 78.8 percent. Among the various dimensions of patient safety culture, teamwork within units received the highest score (67.8%), while non-punitive responses to errors received the lowest score (27.6%). Compared to previous studies, it can be concluded that patient safety cultures in low- and middle-income countries are lacking, underscoring the need for targeted interventions to address this issue.Research14 November 2024
“You May Not Appreciate This Now, But You May Later”: A Qualitative Analysis of the Impact and Meaning of Legacy Interventions as Defined by Bereaved Parents
The death of a child is a significant event that affects the family system. Families of dying children need comprehensive support to help them cope with their trauma and loss. However, there is little research that examines parental preferences and grieving support needs. This study explored bereaved parent mentors' perspectives on legacy interventions to identify preferences and guide best practices for legacy interventions provided by pediatric staff. Legacy interventions can be defined as a practice that encourages families to process, create, and reflect on their experiences, stories, and memories. Six parents whose child died ≥2 years ago and who volunteered as parent mentors at a USA children's hospital's parent mentor program participated in focus groups. Participants were asked open-ended questions related to the patient/family's experience at end of life, including legacy intervention provisions. Focus groups were video recorded, transcribed, and analyzed using thematic analysis. Similar ideas and categories were grouped to generate preliminary categories for coding. Codes were analyzed to identify central themes. Data analysis yielded three themes: 1) Types and Functions of Legacy Items/Activities, 2) Meaningfulness of Legacy Items/Activities, and 3) Process of Providing Legacy Items/Activities. Legacy interventions were reported as meaningful to participants because they connect them to their child, the treating hospital, and other bereaved families. To improve care for families whose child has a serious/terminal illness, professionals should be cognizant of the family's perception of legacy interventions and collaborate with the family's most trusted staff to help discuss and provide legacy interventions.Research14 November 2024
Efficacy of a Communication Toolkit to Optimize Palliative Care Communication in the Surgical Intensive Unit
Data demonstrates patients benefit from the experience of specialty palliative care providers for advance care planning and prioritizing quality of life, regardless of diagnosis or stage of illness. Despite these benefits, many intensive care units (ICUs) show low utilization of palliative care. The purpose of this study was to evaluate the ability of a bedside communication toolkit to improve communication between family members and caregivers of surgical ICU patients and the ICU team, particularly in the context of medical updates and decision-making. A pilot bedside communication tool was completed by fifty family members of trauma and emergency general surgery (EGS) patients. Participants then completed a survey to provide feedback on the toolkit. The majority of family members felt the toolkit helped them to formulate questions for the team and agreed they were more informed as a result of the toolkit. The majority disagreed the toolkit was emotionally upsetting to read through. The perceived benefit by family members/decision makers of surgical ICU patients offers many opportunities for further investigation and integration of the toolkit into practice in the ICU and beyond. A communication toolkit may improve communication between patient providers and family members, particularly in key medical decision-making discussions.Research14 November 2024
An Exploratory Qualitative Study of Perinatal Experiences in an Acute Setting during Early Phases of the COVID-19 Pandemic
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 in-hospital care; support from family and friends; interactions and communications with the healthcare team; and seeking information. Results were positively received by the perinatal clinical team and changes were identified to further improve experiences of care. A deeper understanding of patients' lived experiences of hospital services available during public health emergencies can offer important, actionable information for healthcare providers.Research14 November 2024
Patient, Family, and Health Professional Perspectives of How Families are Involved in Adult Inpatient Traumatic Brain Injury Rehabilitation
Objective: We aimed to answer the following research question: From the perspectives of patients, family members, and health professionals, how are families involved in the rehabilitation of adult patients with Traumatic Brain Injury at an inpatient Acquired Brain Injury service within an adult rehabilitation centre? Methods: We used an interpretive qualitative approach, from a constructivist view. This approach allowed us to understand and describe family involvement from the perspectives of patients with Traumatic Brain Injury, family members, and health professionals. We conducted one-on-one interviews with patients, family members, and health professionals. We used a three-step analysis method: data reduction, data display, and conclusions/verifications. Results: Six patients, four family members, and ten health professionals participated. Participants described how families are involved in supporting and encouraging the patient, seeking and exchanging information, making decisions, and care and therapy. Conclusion: Overall, patients and family members perceived family involvement as critical, while health professionals viewed it as not always necessary. This study also revealed that patients and family members shared similar understandings of family involvement but had different understandings than health professionals. Recognizing that the adult population and rehabilitation processes are unique and complex, we need to understand how to support family involvement, through patient- and family-centered care, in this type of setting. We also need to understand how to better facilitate patient-family-health professional collaboration.Research14 November 2024
Consumers', Family Members', and Health Practitioners' Perspectives on Increasing Activity Engagement of Older Patients Admitted to Geriatric Hospital Units
The aim of this study was to explore the perspective of consumers, family members, and health practitioners on increasing patient activity engagement in a Geriatric Evaluation and Management (GEM) Unit. This study followed a qualitative phenomenology approach. Semi-structured interviews were conducted, audio-recorded and transcribed verbatim with consenting patients (n = 12), family members (n = 3), and health practitioners (n = 5) admitted to the GEM Unit of a tertiary metropolitan hospital in Melbourne, Victoria, Australia between August 2017 and March 2018. Data were analysed using spiral content analysis. From the 20 interviews, three themes emerged: 1. What can I do, 2. What I want to do, and 3. What can we do? Patients received limited opportunities to be active during hospitalisation. They were often faced with nothing to do and unsure what to do. Patients frequently reported higher activity levels at home. Activities that were enjoyable, beneficial, and of their own choice drove their desire to engage. Family members and health practitioners played an essential role in facilitating patients' engagement and required knowledge and skills to do so. Other Australian hospitals have used environmental enrichment strategies to increase patients' activity. Implementing such strategies, including tailored individual and communal activities to increase activity participation should align with patients' preferences and needs.Research14 November 2024
Driving Healthy Behaviors through Social Support: The Role of Co-Responsibility in Weight Loss and Maintenance
Objective: The effectiveness of out of hospital lifestyle interventions in healthcare is likely co-dependent on social support from involved one's. We sought to investigate the interrelationships between patient-partner Co-responsibility, Spousal Support, and Self-efficacy and the mechanisms through which they contribute to health behaviors and outcomes relevant to weight loss and maintenance. Methods: Co-responsibility, Spousal Support, self-efficacy, health outcomes and health behaviors like total weight loss, physical activity, OBESI-Q, and health satisfaction were assessed through a questionnaire among 868 individuals attempting to lose weight. Full and semi-partial correlations were used to understand the association between Co-responsibility, Spousal Support, Self-efficacy and health outcomes and behaviors. Results: Results showed that increased Co-responsibility was associated with improved health outcomes and that it extended the construct of Spousal Support. The underlying pathway of associations between Co-responsibility and health outcomes was found to be through Self-efficacy. Finally, it was revealed that increased Co-responsibility caused an improvement in Self-efficacy. Conclusion: Understanding Co-responsibility among patients and their involved one's could provide valuable information to health care professionals to tailor care trajectories and achieve better patient health outcomes.Research14 November 2024
Exploring Consumer and Clinician Attitudes towards Patient Reported Outcome Measures (PROMs) in an Australian Inpatient Musculoskeletal Rehabilitation Unit: A Qualitative Pilot Study
Objective: This pilot qualitative study explores consumers' and clinicians' perspectives about the relevance and utility of patient reported outcome measures (PROMs) in an Australian inpatient rehabilitation unit. Methods: Two focus groups, were recruited via convenience sampling, comprising English speaking rehabilitation clinicians (n = 5) and consumers (n = 6) who had recent experience of inpatient musculoskeletal rehabilitation in a large, privately funded, rehabilitation hospital in Melbourne Australia, in 2020. The focus groups were conducted via videoconference, moderated by two experienced rehabilitation clinician-researchers, following semi-structured interview guides. Focus group recordings were professionally transcribed for coding and thematic analysis by two researchers, with consensus reached about final themes. Results: Rehabilitation clinicians and consumers identified potential utility in measuring PROs at the patient level to improve patient-centred care and team coordination, and at the system level through quality improvement, benchmarking and research. Benefits were viewed as contingent on a clearly articulated rationale for measurement, careful selection of PRO instruments and specific application in target populations, with doubts expressed over their specific utility in musculoskeletal rehabilitation. Risks associated with PROMs were also identified, including procedural burden, emotional distress, psychological safety, incomplete forms and opportunity-cost. Clinicians and consumers expressed concern over the validity, reliability and representativeness of PROM data. Conclusions: While the potential benefits of PROMs were recognised, numerous risks and logistical challenges were also identified. The current lack of confidence from both clinicians and consumers in the inherent value of PROM data and its ability to improve patient care or quality standards will likely impede successful incorporation into routine rehabilitation care.Research14 November 2024
A Role Discovered: Exploring Northwell Health's Patient Experience Structure and Leadership Characteristics
Examining the evolution of healthcare, leaders in patient experience (PX) have played a pivotal role in shaping a more compassionate and human-centered landscape. This three-part multi-modal descriptive study aimed to investigate shared traits, skills, and characteristics among PX leaders in hospital settings. Employing a transformational leadership self-assessment tool and a guided interview process, recurring themes surfaced. The majority of participants reported employing a transformational leadership style. PX leaders emphasized the significance of communication, empathy, adaptability, teamwork, presence, and relationship-building in their roles. While hospital executive leaders had a slightly varied perspective on essential PX leader skillsets, they underscored the importance of analysis, execution, and collaboration. As the role of PX leaders continues to evolve, an understanding and awareness of these behavioral competencies can aid in the identification, development, and retention of PX talent.Most Accessed Articles
Journal Article
20 November 2014
Customer service vs. Patient care
In a competitive market where financial resources are limited, many of the popular approaches to improving the patient experience involve large capital investments in such things as hotel style amenities and expensive technology. The author argues that marketing based on a model of the patient as a traditional ‘customer’ is ill conceived and contributes unnecessarily to the high cost of healthcare while lacking a true understanding of, or an appropriate response to, the most basic needs of hospitalized patients that lead to patient satisfaction. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework [http://bit.ly/ExperienceFramework]) * Access other PXJ articles [https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Patient%2C%20Family%20%26%20Community%20Engagement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D] related to this lens. * Access other resources [https://www.theberylinstitute.org/page/Ecosystem-PatientFamilyCommunityEngagement] related to this lens.Journal Article
30 April 2014
Defining Patient Experience
In recent years, perceptions of performance and quality of healthcare organizations have begun to move beyond examining the provision of excellent clinical care, alone, and to consider and embrace the patient experience as an important indicator. There is a need to determine the extent to which clear and formal definitions exist, have common overarching themes, and/or have unique, but important constructs that should be considered more widely. In this article, we provide a 14-year synthesis of existing literature and other sources (2000-2014) that have been used to define patient experience. A total of 18 sources (articles or organizational websites) were identified that provided a tangible, explicit definition of patient experience. A narrative synthesis was undertaken to categorize literature (and other sources) according to constructs of the definitions provided. The objectives of the synthesis were to: (1) identify the key elements, constructs, and themes that were commonly and frequently cited in existing definitions of ‘patient experience,’ (2) summarize these findings into what might be considered a common shared definition, and (3) identify important constructs that may be missing from and may enhance existing definition(s). The overarching premise was to identify and promote a working definition of patient experience that is applicable and practical for research, quality improvement efforts, and general clinical practice. Our findings identified several concepts and recommendations to consider with regard to the definition of patient experience. First, the patient experience reflects occurrences and events that happen independently and collectively across the continuum of care. Also, it is important to move beyond results from surveys, for example those that specifically capture concepts such as ‘patient satisfaction,’ because patient experience is more than satisfaction alone. Embedded within patient experience is a focus on individualized care and tailoring of services to meet patient needs and engage them as partners in their care. Next, the patient experience is strongly tied to patients’ expectations and whether they were positively realized (beyond clinical outcomes or health status). Finally, the patient experience is integrally tied to the principles and practice of patient- and family- centered care. As patient experience continues to emerge as an important focus area across healthcare globally, the need for a standard consistent definition becomes even more evident, making it critical to ensure patient experience remains a viable, respected, and highly embraced part of the healthcare conversation. Experience Framework This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework [http://bit.ly/ExperienceFramework]) * Access other PXJ articles [https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Culture%20%26%20Leadership%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D] related to this lens. * Access other resources [https://www.theberylinstitute.org/page/Ecosystem-CultureLeadership] related to this lens.Journal Article
30 April 2014
Evaluation and measurement of patient experience
Despite the increasing presence of a variety of measures of patient health care experiences in research and policy, there remains a lack of consensus regarding measurement. The objectives of this paper were to: (1) explore and describe what is known about measures and measurement of patient experience and (2) describe evaluation approaches/methods used to assess patient experience. Patient-experience does not simply reflect clinical outcomes or adherence–driven outcomes; rather it seeks to represent a unique encompassing dimension that is challenging to measure. Several challenges exist when measuring patient experience, in part, because it is a complex, ambiguous concept that lacks a common or ubiquitous definition and also because there are multiple cross-cutting terms (e.g., satisfaction, engagement, perceptions, and preferences) in health care that make conceptual distinction (and therefore measurement) difficult. However, there are many measurement and evaluation approaches that can be used to obtain meaningful insights that can generate actionable strategies and plans. Measuring patient experience can be accomplished using mixed methods, quantitative, or qualitative approaches. The strength of the mixed methods design lies not only in obtaining the “full picture,” but in triangulating (i.e., cross-validating) qualitative and quantitative data to see if and where findings converge, and what can be learned about patient experience from each method. Similar to deciding which measures to use, and which approaches to utilize in measurement, the timing of measurement must also fit the need at hand, and make both practical and purposeful sense and be interpreted in light of the timeframe context. Eliciting feedback from patients and engaging them in their care and health care delivery affords an opportunity to highlight and address aspects of the care experience that need improvement, and to monitor performance with regard to meeting patient experience goals in the delivery of care. The use of core patient-reported measures of patient experience as part of systematic measurement and performance monitoring in health care settings would markedly improve measurement of the ‘total’ patient experience and would heighten our understanding of the patient experience within and across settings. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework [http://bit.ly/ExperienceFramework]) * Access other PXJ articles [https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Policy%20%26%20Measurement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D] related to this lens. * Access other resources [https://www.theberylinstitute.org/page/Ecosystem-PolicyMeasurement] related to this lens.Research
6 November 2018
Barriers and enablers of patient and family centred care in an Australian acute care hospital: Perspectives of health managers
The aim of this study was to identify and explore organisational barriers to, and enablers of, patient and family centred care within an Australian acute care hospital from the perspective of that hospital’s management staff. A qualitative study, incorporating purposive sampling and semi-structured interviews was undertaken in a 215-bed metropolitan acute care public hospital in Sydney, Australia. Fifteen health managers from a broad range of professional groups, including Medicine, Nursing, Allied Health and non-clinical services were interviewed. Interview data were recorded, transcribed, and analysed for key themes using the Framework Approach. The key barriers to patient and family centred care were: i) staffing constraints and reduced levels of staff experience, ii) high staff workloads and time pressures, iii) physical resource and environment constraints and iv) unsupportive staff attitudes. The key enablers of patient and family centred care were: i) leadership focus on patient and family centred care, ii) staff satisfaction and positive staff relations, iii) formal structures and processes to support patient and family centred care, iv) staff cultural diversity and v) health professional values and role expectations. This study provides an understanding of the factors that restrict and enhance patient and family centred care specific to an Australian acute care hospital setting. Implementation of strategies targeted at these factors may help the study site, and potentially other hospitals in similar settings, to improve patient and family centred care. In turn, this may lead to improved outcomes for patients, families, staff and healthcare organisations.Journal Article
12 November 2015
The critical role of family in patient experience
In this commentary Brian Boyle raises a simple, yet critical point about the value of family in the care experience. He offers, “When you are focusing on the goals for the patient's recovery, the doctors work with the nurses, specialists, and patient’s family to decide on the appropriate care plan for the patient on both a short- and long-term basis. It is vital that this multi-disciplinary approach occurs during the formation of the care plan and is frequently updated as time goes on. The loved ones of a patient may not have a medical license or healthcare background, but their voice and presence matters in the hospital room.” This reflection is grounded in the author’s personal journey from tragedy to recovery and offers some thoughtful insights not only into the value of family in the patient experience overall, but also how to be intentional in our efforts to engage the family members of those being cared for in healthcare today.Journal Article
20 November 2014