Patient Experience Journal (PXJ, The Beryl Institute)
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Reconnecting the mind and body: A pilot study of developing compassion for persistent pain
Get PDFAs an alternative to the more typical cognitive behavioural approach to pain management, a novel pain management group based on the principles of compassionate mind training was developed for a particular sub-group of patients. Participants were patients of a community pain clinic, who were invited to participate in this alternative approach to pain management. The eight-week Compassion in Pain Groups included psychoeducation around persistent pain, the underlying principles of compassionate mind training, practical exercises such as diaphragmatic breathing, followed by a series of compassionate imagery exercises and group discussions. Both quantitative and qualitative analyses were undertaken to gain further insights into the usefulness and efficacy of this approach. Firstly, descriptive statistics indicated that participants reported lower scores for pain-related anxiety and depression upon completion of the groups. Participants also reported higher scores for self-kindness and self-compassion, pain willingness and activity engagement. Secondly, qualitative data was collected through audio-recorded reflective group discussions at the end of the final session, which were analysed using interpretative phenomenological analysis. Findings from the qualitative analysis suggested that participants experienced themselves and their pain differently over the course of the group due to self-reflection, self-acceptance and the development of new skills leading to a new found sense of wholeness, integrating their current experiences of pain and past selves. Implications and recommendations are discussed
Evaluating variables of patient experience and the correlation with design
Get PDFThe objective of this paper was to understand the variables of patient experience by analyzing recent and relevant evidence and to identify design solutions within the hospital environment that positively impact those variables. A systematic review of literature published from 2008-present was conducted to identify variables that contribute to patient experience benefits. Identified variables were documented and categorized into a design, organizational, and outcome variable matrix. Interviews were conducted with professionals from healthcare institutions, architecture firms and organizations committed to improving the patient experience. Data from healthcare facilities, with high patient experience scores, was also examined to derive effective design solutions. The results showed patient engagement, satisfaction - patient and staff, clinical effectiveness, personalization, patient safety and, admission and discharge process were the variables that demonstrated a strong correlation with patient experience benefits. Analysis of the variables resulted in a range of design solutions, such as private and public interaction spaces, decentralized care models, designated staff areas etc. that could potentially improve the outcomes associated with each variable. This study illustrates that aspects of patient experience adopted before, during, and after the delivery of care have the ability to affect adherence, communication, and ultimately the relationship with the patient. It also shows that design of the physical space has a significant impact on the model of care and the overall experience of the patient and family
Pushing the boundaries of patient experience
Get PDFThis special issue is designed to push the boundaries of patient experience a little farther. Beyond just examples of applying the critical principles of patient and family centered care or even practices of patient engagement, we have been pushed to move further down the perspective of partnership, to the era of “doing with” in which healthcare now finds itself. The idea of involvement as the descriptor selected to frame this issue, was due to its broad and representative nature. It reflects all the words on involving patients mentioned above, but gets further along to participation and ownership (or activation as many now tend to use) and even beyond partnership to the intimacy involvement connotes. Involvement here gets us to the personal and emotional levels that connects someone to what they are doing and reflects the whole person connected to that experience. That represents the opportunity reflected in this issue and in pieces that have comprised Patient Experience Journal to date. Through these contributions we have realized an opportunity to invite disparate voices and introduce new ideas, to gray the edges of what people deemed patient experience to be, and to push the boundaries of what patient experience truly is
Call for Submissions. Special Issue – July 2018: Patient & Family Experience in Children’s Hospitals and Pediatric Care
Get PDFPatient Experience Journal (PXJ) is excited to announce a call for submission for its special issue scheduled for July 2018 on the topic of patient & family experience in children’s hospitals and pediatric care. This special issue is open to all authors conducting cutting-edge research, implementing innovative practices or with powerful experiences to share around efforts in either children’s hospitals or pediatric care. It is encouraged that articles submitted deal directly with efforts in those care settings. The issue will look for pieces that address evidence-based efforts at improvement, practices that have impact on outcomes or stories that reflect the true meaning and opportunity in a positive patient & family experience in pediatrics. It will provide an opportunity to highlight accomplishments, reveal new findings and contribute to the literature aimed at improving results. The deadline for submissions for this special issue is March 1, 2018. You can begin the submission process here: http://bit.ly/PXJ_Submit
I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis
Get PDFThis study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); (2) Control (no control or some control); (3) Difference/Normalcy (different, normal, normal except for CF); (4) Acceptance/adaptation (acknowledgement of CF, reworking life to accommodate CF). Adolescents did not have just one feeling about CF but felt differently at different times. Younger and/or healthier adolescents were less likely to focus on CF as central to their self-image. When not dealing directly with treatments or clinic visits, these adolescents had identities comprised largely of “typical” adolescent interests such as school, friends, hobbies, and family. CF played a more prominent role in the identities of older and sicker adolescents. Adolescents also found ways to adapt or alter their lives and their CF-related activities to make them feel more like “normal” adolescents. Implications for treatment are provided
Leadership development practices and patient satisfaction: An exploratory study of select U.S. Academic medical centers
Get PDFInterest has been growing among academic medical centers (AMCs) in organization-wide strategies that may improve patient satisfaction. Although leadership development programs have been cited as a potentially useful approach, thus far almost all evidence has come from single-organization case studies. The present study sought to examine potential relationships between leadership development and patient experience across organizations. Data for leadership development practices were obtained from a survey conducted by the National Center for Healthcare Leadership. Patient experience data were obtained from the U.S. Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS). Multivariate analyses (general linear regressions) were performed to examine the influences of leadership development practice on HCAHPS patient satisfaction scores after controlling for organization characteristics. A total of 23 AMCs met criteria for the study. Multivariate regression analyses identified statistically significant relationships between patient satisfaction scores and three leadership development dimensions: incorporating administrative fellowships, strategically aligning leadership development, and the overall composite score. Findings provide preliminary evidence that leadership development practices may be another useful strategy for improving patient experience outcomes. Future studies involving larger samples are needed to determine how generalizable these findings may be, as well as which specific leadership development practices may be most impactful. This is the only study we are aware of that links leadership development practices to patient experience outcomes at the organization level
The paradigm of patient must evolve: Why a false sense of limited capacity can subvert all attempts at patient involvement
Get PDFThis essay reviews the role of paradigms in molding the thoughts of a scientific field and looks rigorously at what two key terms mean – empowered and engaged – and how their interaction points to a new way forward, requiring a re-examination of our “paradigm of patient.” Five years ago, the Institute of Medicine’s Best Care at Lower Cost declared that patient-clinician partnerships are a cornerstone of a learning health system, a declaration that’s foundational to the era of involvement. How can we engineer that era correctly if our conception of “patient” is out of date? And how can we validate whether our model works? In the past eight years, the author has spoken at or participated in over 500 events in sixteen countries, and although declaring himself “just a patient,” he has observed persistent cultural patterns that make one thing clear: there is a need to change our understanding of the role of the patient in achieving best possible care
Integrating person directed care into the client experience
Get PDFCulture Change leaders in long term care have identified creative ways to implement a model of Person Directed Care to improve the client experience by providing choice, instilling dignity, and fostering deep relationships among its community members. One organization created an environment of care called ”The Small House” and educated its’ workforce using the Green House® Project Legacy Alignment program to redesign the organizational structure, experience and environment. Interviews were conducted with elders, staff, and family members (N=20) about their experiences living, working or visiting a Small House as compared to experiences in their previous dwelling, a traditional nursing home. They were asked to describe the biggest difference between the Small House and the traditional nursing home model, and the differences in the two models in terms of the food, personal care, and relationships. Study participants were also asked to rate on a likert scale satisfaction with their experiences in the traditional nursing home and the Small House. Results showed that satisfaction ratings were higher among all groups living, working, or visiting the Small House compared to the traditional nursing home setting. The themes that emerged most often in comparing the Small House homes to the traditional nursing home included choice, homelike atmosphere, positive sensory environment, and evidence of close relationships in the Small House. The Small House homes studied in this qualitative investigation appear to have captured the important elements that create real home and consistent care partners who know the elders deeply to keep them comfortable and engaged
Experience-based co-design: A method for patient and family engagement in system-level quality improvement
Get PDFIntegrating patient and family member needs, wants and preferences in healthcare is of utmost importance. However, a standardized patient and family engagement model to understand these needs, wants and preferences in order to translate into high quality improvement activities is lacking. Experience based co-design (EBCD) is an approach that enables patients, family members and healthcare providers to co-design improvement initiatives together. In this study, EBCD was employed to: 1) assess the current state of information and educational resources at a local oncology center and 2) partner with patients, family members, and healthcare providers to create quality improvement initiatives targeting identified issues. Three focus groups were conducted: 1) patient and family member-specific, 2) healthcare provider-specific, and 3) all participants (including patients, family members and healthcare providers). Discussion questions were focused around current educational resources, barriers encountered throughout the cancer continuum, and recommendations for improvement. Six themes emerged from the two initial focus groups with patients and family members and healthcare providers: 1) patient-provider communication, 2) accessing information, 3) tailored information, 4) side effect information, 5) caregiver information, and 6) partners in care. Themes were presented to participants to ensure findings accurately depicted their experience and five quality improvement projects were created, aligning with the themes. This study provides an example of how EBCD helped to foster a safe environment, where patients, family members, and healthcare providers worked together in order to improve educational resources
Rebalancing the patient experience: 20 years of a pendulum swing
Get PDFThis essay looks back at two decades of the patient experience movement. The evolution of patient experience includes moving from a belief system in which patients and families are solely the recipients of care to a model in which patients and families are co-designing treatment plans, systems and policies. This evolution has taken time and continues to evolve to this day. As the pendulum swings, we see that we have made great progress and, simultaneously, found ourselves with all new challenges to overcome