Patient Experience Journal (PXJ, The Beryl Institute)
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Family-Centered Care in Pediatric and Neonatal Intensive Care Units: A Systematic Review of Effects on Parental Satisfaction and Length of Stay
Get PDFBackground: Family-centered care (FCC) is essential in pediatric and neonatal intensive care units (PICUs), potentially increasing parent satisfaction and reducing length of hospital stay, but evidence of its effectiveness is inconsistent. Objective: To assess the effects of FCC interventions on parent satisfaction and length of hospital stay in PICUs. Methods: A systematic review was conducted, with 17 studies meeting the established inclusion criteria. The McMaster tool was used to assess the methodological quality of studies, along with an assessment of risk of bias. Results: The review identified a wide range of FCC interventions, including promoting parental involvement and strengthening partnerships with healthcare providers. Significant improvements in parent satisfaction were noted, particularly in interventions that highlighted cooperation between parents and providers. However, data relating to length of hospital stay were more variable. Conclusion: FCC initiatives demonstrate the potential to improve parental satisfaction in pediatric and neonatal ICUs. However, additional studies using robust designs and uniform outcome metrics are needed to improve the evidence base and gain a clearer understanding of their effects on clinical outcomes. Optimizing FCC practices could enhance the overall experience for patients and families in the ICU
Partnership, Collaboration, and Co-Production to Improve Patient Experience Beyond Conducting Surveys – Lessons from the Quebec Model, Canada
Get PDFObjective: The objectives of this article are to present how, in the province of Quebec (Canada), healthcare and service partnerships have been implemented, to take stock of the current situation and to suggest ways to continue strengthening the model over the coming years, in Quebec and elsewhere in the world. Methods: Three methods were mobilized: (1) a review of the literature and reports published in recent years on implementations of partnerships in Quebec; (2) a survey sent to the persons responsible for partnerships in Quebec’s health and social services establishments; and (3) a working committee comprised of patient experts, partnership practitioners and researchers to develop recommendations to further consolidate The Patient Revolution that the province of Quebec is currently experiencing. Results: This Québec model, which has been under development since 2010, is based on the following principles: recognition of: (1) the experiential knowledge of individuals with health or psychosocial conditions who use the healthcare system; (2) the capacity of patients/service users to act as their own caregiver; (3) participation as full members of clinical or psychosocial teams, to complement the information needed to make informed decisions and achieve personal goals; and (4) the ability of individuals to make decisions for themselves, with the support of professionals and family members. The model has been implemented at various levels within the healthcare and social systems, as well as in education, training, and community health. There are also various levels of engagement, ranging from information provision to co-construction. However, in order to continue strengthening the model and support its consistent application throughout the health and social services network, recommendations have been made concerning the overall structure of partnership. Conclusions: The health care and service partnership model has proven to be highly adaptable for application in a variety of contexts. By recognizing the complementarity of scientific, professional, and experiential knowledge, the partnership model supports a levelling of power among stakeholders, both to address health issues as well as for setting priorities in the health system. It therefore offers a path to improving patient experience and outcomes
Communicating Effectively when Engaging People with Lived Experience in Mental Health and Substance use Health Research: A Qualitative Descriptive Study
No full textBackground. People with lived experience of mental health and/or substance use challenges and families (PWLE/F) are increasingly engaged in research, providing positive impacts. However, effective engagement can be challenging, including ensuring effective communication. This qualitative study sought to understand the communication preferences of PWLE/F who are engaged in mental health and substance use health research. Method. A total of 18 participants (aged 19 to 79) took part in one of four focus group discussions. A semi-structured interview guide was used to facilitate the discussions. Focus group transcripts were analyzed using codebook thematic analysis. PWLE/F were engaged in all stages of the study in the form of a PWLE/F Advisory Group. Results. Four themes were generated from the data: 1) Communicate in trusting and respectful ways, 2) Use an accessible communication style, 3) Employ effective communication approaches before, during, and after meetings, and 4) Use technology effectively to support engagement. Each theme is illustrated by several subthemes and representative quotes. Conclusions. Clear communication can help support strong engagement practices, where everyone involved has the opportunity to contribute. Friendly, accessible, jargon-free communication can help people with lived experience and families feel authentically engaged, but departs from typical scientific communication styles and may require specific effort for some groups to achieve. Communication should be continuous, throughout the engagement cycle. Technology can be used to help support this. Attending to clear communication throughout the research and engagement lifecycle is a key consideration that can help achieve an authentic PWLE/F engagement climate
Enhancing System-Level Quality Improvement through Patient-Inclusive Teamwork: A Review
No full textEngaging patients in quality improvement (QI) initiatives offers significant advantages, including increased patient satisfaction, improved outcomes, and the integration of creative insights from patient perspectives. This review synthesizes findings from 14 peer-reviewed articles retrieved from PubMed and Google Scholar, focusing on patient-inclusive teamwork in healthcare settings. Despite the recognized benefits, patient involvement remains limited due to cultural and professional barriers, logistical challenges, and the need for structured training programs. The review contrasts conventional provider-centered approaches with patient-centered models, emphasizing the importance of policy reform, organizational culture change, and supportive training to enhance patient engagement. Traditional QI strategies often overlook patient input, which can lead to dissatisfaction and misalignment with patient needs. Conversely, patient-centered strategies foster greater satisfaction, treatment adherence, and innovation. However, successful implementation requires overcoming systemic obstacles through cultural transformation, skill development, and logistical support. The literature underscores that technology, organizational readiness, and policy frameworks play a pivotal role in enabling meaningful patient participation. The findings highlight the need for an integrated quality improvement approach that prioritizes patient collaboration. Future recommendations include implementing digital literacy initiatives and cultural competency training to ensure inclusive, effective, and sustainable patient engagement in healthcare improvement efforts
Triad: A Novel Team Structure Pilot and its Impact on Patient Experience in the Pediatric Emergency Department
No full textIntroduction: Patient experience is inextricably tied to effective communication between the care team and patient. Published trials designed to improve communication and therefore patient experience in the pediatric emergency department setting are lacking. Methods: This is a novel care team reorganization in a single tertiary care pediatric emergency department. A Triad team consisted of a nurse, emergency technician (Tech), and physician or advanced practice practitioner (APP). The team was designed and trained with an emphasis on closed loop communication with the team and patient to test whether improving effective communication can subsequently improve the patient experience. Using a real-time survey, patient responses were compared among three groups: Pre-Intervention, Triad, and Non-Triad intervention. Results: Triad team survey responses were generally as good as or better than comparison Triad survey groups, especially on questions related to care team communication. Responses were found to be statistically significant (p \u3c .05) for two questions: ``How long ED care may take\u27\u27 and ``Updates on delays in treatment\u27\u27. The Triad survey was also compared to the standard institutional patient experience survey. Patients and families scored their experience much lower on these as compared to all Triad surveys. Conclusions: Reorganizing our teams had a clear impact on certain experience metrics and may serve as a basis for future efforts to improve patient experience through care team reorganization. It also highlighted the challenges of deviating from our ED\u27s standard team configuration
PXJ Volume 12 – Key Theme Summary and Article Index
No full textVolume 12 of the Patient Experience Journal showcases a global dedication to advancing human experience in healthcare, illuminating both existing challenges and crucial emerging practices. The content, spanning three issues, emphasizes that improving the human experience is not a temporary initiative but rather the essential foundation for building trust, ensuring safety, facilitating healing, and sustaining organizational resilience. The overarching message of Volume 12 is that human experience is the heart of healthcare. It is actively shaped through shared purpose, design, empathy, communication, and partnership. The journal calls for a future where every voice is heard, every story matters, every partnership is authentic, and every system is designed around people. Experience excellence is defined not as a destination, but as an ongoing promise and commitment. This article provides a summary of key themes and a full interactive index of all articles in Volume 12 of PXJ.
You can access the full summary via this link: https://surveys.theberylinstitute.org/jfe/form/SV_6opY8W5D2K5tjv
Re-Recruitment: An Essential Aspect of Human Experience
Get PDFHealthcare staffing is a major issue facing leaders at all levels and is affected by turnover rates in ``The Great Resignation,\u27\u27 as well as the issue of burnout, moral injury, and turnover. In seeking to deal with defining and making human experience as reality, these factors affect every level, from patient experience to workforce experience to community experience, all of which are related to not just adequate staffing and preventing turnover but doing so with our highest performing ``A Team\u27\u27 members. Using the tool of re-recruitment of these high-level professionals and team members can be critical to retaining talent, while providing an improved human experience at every level of the organization. This entails continuously re-recruiting A Team members, coaching and mentoring B Team members to re-join the A Team through specific disciplines, and considering whether C Team members are able to change. Specific examples and tools are demonstrated
Psychosocial Dimensions of Living with Hep B: Notes from the Field: The Lived Experience of a Mother Raising a Daughter with Hepatitis B
Get PDFWhat follows is based on the interweaving of three points of view each of which contributes to an understanding of the experience of living with Hepatitis B: (i) as the mother of a daughter who was diagnosed with HBV at 5 months and who still, at age 22, carries traces of the surface antigen in her blood; (ii) as a participant in the Hepatitis B Foundation’s (HBF) “Storytellers” program in which those impacted by the disease meet with others to share experiences and narrate a short video posted on the HBF website; and (iii) as a PhD research psychologist-turned-psychoanalyst interested in both conscious and unconscious beliefs, emotions and motives which float in and out of awareness and drive behavior. The intent of this paper is to describe 5 psychosocial dimensions for examining the stressful experience of those living with Hepatitis B: (i) Stigma/Shame; (ii) Anxiety; (iii) Guilt/Envy, (iv) Conflict with the Caretaker; and (v) Loss vs. Engagement. This framework is put forth for probing more deeply the nature of the psychosocial impact on those living with Hepatitis B
A Patient’s Journey: Navigating Life with Type 1 Diabetes
Get PDFWe are all patients. This article represents my views from my personal experience with type 1 diabetes for 25 years, in combination with my professional experience over the past 10 years as I have worked in patient support, health promotion and improving the patients’ experience. I aim to provide an outlook on the patient perspective, how the physician encounter translates to them and finally, what are some gaps that need to be filled in order to have a better experience and better health outcomes as a result. As I wrote the article, I shared my perspective building on my personal encounters and reflected on what I personally believe could be added to the journey of patients in order to improve it
Is Timing Everything?: The Role of Time on the Relationship between Patient-Centered Communication and Provider Empathy
Get PDFSeveral studies have indicated that providers that successfully implement patient-centered communication (PCC) practices related to health literacy and exemplify higher levels of empathy improve patient health outcomes. Time is frequently noted as a barrier when implementing PCC practices. The purpose of this study was to examine the role of time on the relationship between PCC and provider empathy. A cross-sectional study design was employed utilizing data from the 2019 Medical Expenditure Panel Survey-Household Component (MEPS-HC) and a supplemental survey, Self-Administered Questionnaire (SAQ), including a total of 6,459 patient respondents (N = 6,459). Structural Equation Modeling (SEM) was utilized for the analysis including PCC as the independent variable, time adequacy as the mediating variable, and provider empathy as the dependent variable. The results indicated the relationship between PCC and provider empathy is partially mediated, 54%, by time adequacy. These findings suggest that patients are not only concerned with the amount of time spent with providers, but also how that time is utilized by providers. Additionally, it suggests that for providers to be perceived as empathetic, spending more time with patients should not be the only priority. Quality improvement efforts of health care organizations should be aimed at including more PCC practices related to health literacy