Patient Experience Journal (PXJ, The Beryl Institute)
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The experience, satisfaction, and Emergency Department utilization of pediatric patients with sickle cell disease during the Covid-19 pandemic
Get PDFThe COVID-19 pandemic has influenced how patients utilize healthcare. This study examines the utilization, experience, and satisfaction of patients with Sickle Cell Disease (SCD) in the pediatric Emergency Department (ED) during the COVID-19 pandemic compared to the care they had received before the pandemic. The authors surveyed fifty-eight participants ages 14 months to 20 years who presented to the ED for a complaint related to their SCD during the COVID-19 pandemic. The study analyzed five variables: race, SCD severity, hemoglobin (Hgb) genotype, who completed the questionnaire (patient versus parent/guardian), and whether the ED visit resulted in an admission to the hospital. Our results suggest that the COVID-19 pandemic significantly affected the decision of some patients as to whether and when to go to the ED. African Americans and those with severe disease did not wait longer than usual to go to the ED, possibly because these groups are more likely to have more serious and more frequent pain crises. Thus, their decision to present to the ED was driven more by their relatively worse symptoms, rather than such external factors as the pandemic. However, the pandemic did not significantly affect patients’ satisfaction with their ED visit or their baseline SCD symptoms. To our knowledge, this is the first study of how the COVID-19 pandemic has affected patients’ utilization of, experience in, and satisfaction with a pediatric hospital ED.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
“I See What You Do”: A patient’s view of equity
Get PDFAs a Black woman and a patient, the author describes what it is like navigating healthcare as a person of color in the U.S. Fully aware of the disparities that exist in healthcare, she shares her personal roadmap for assessing equity as a patient searching for a new provider. In the absence of standardized ways to assess equitable outcomes, she has created her own metrics and uses them to draw her own conclusions. From her experience as a Patient and Family Advisor, the author provides clues for assessing diversity within healthcare organizations. Imagining a new existence in healthcare, the author calls for organizations to look inside at their practices and policies to do this new thing called equity. A transformed healthcare system can become a reality but only in those organizations where “what you do” matches “what you say.”
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Patients’ and family caregivers’ perceptions of doctor-to-doctor advice and electronic referral notifications in Alberta
Get PDFEffective communication between health professionals and patients is essential to patient safety and quality care. Primary care providers seeking specialist advice to manage patients’ conditions in the community has recently been adopted to improve timely access to specialty care and increase the efficacy of the referral process. To understand patients’ and family caregivers’ perceptions on doctor-to-doctor advice for non-urgent clinical questions and electronic referral communications with patients in Alberta, a mixed method online survey was conducted by Alberta Health Services’ Access Improvement team. A total of 1,422 patients and family caregivers living in Alberta were included in the quantitative and qualitative analysis. Although the majority of participants were comfortable with their doctors seeking advice via secure online messaging systems (93%) and over the phone (89%), about half of the participants did not know if their family doctors had ever obtained advice from a specialist to support their care. Their concerns surrounding doctor-to-doctor, non-urgent advice included the security of transferred information, privacy and confidentiality of patient information, misunderstanding of information, and delayed communication. In addition, 63% of participants reported that email was the most convenient way to receive electronic notifications about their referrals. Increasing patients’ and family caregivers’ awareness of advice services in Alberta will help promote person-centered care and improve communication during the referral and consultation process. Our findings also encourage healthcare providers and policymakers to further evaluate key areas for improvement and implement new strategies to promote better patient and provider communications while enhancing timely access to specialty care.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Exploring mental health experience in individuals living with temporomandibular disorders
Get PDFDespite the evidence supporting deteriorating mental health because of temporomandibular disorders (TMDs) conditions, there is limited evidence of TMD patients\u27 experience regarding how their mental health is affected by the disorders. As a sequence of these conditions, TMD patients suffer from physical and mental complications, not to mention the loss of food enjoyment. In this study, we aim to explore TMD patients\u27 lived experiences who had changed their dietary habits concerning their mental health. Six participants were interviewed to answer open-ended questions during semi-structured interviews regarding their mental health experiences with TMD-related food routine changes. These interviews were held face-to-face with the participants and were recorded and transcribed. Interpretive phenomenology was used to organize and analyze the narrative data collected. We identified three themes amongst participants who have concerns about their mental health that included (i) depraving of favored food, (ii) rethinking in all aspects of their life, and (iii) fear of future. For each of these themes, the participants\u27 mental health was affected by TMD\u27s pain due to diet changes, consequently, lifestyle, daily activities, and hopefulness for a cure. The participants\u27 mental health was mostly unaddressed by their healthcare providers. Our findings highlight the need for healthcare providers to establish nutritional guidelines for TMD individuals at risk of psychological and physiological comorbidities. Also, the need for healthcare for intervention programs to treat people living with chronic TMD pain.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Testing of Patients First in a real-world setting, as a patient experience accreditation tool for hospitals and clinics
Get PDFMany healthcare providers are developing patient experience strategies and investing in this area. Yet, patients have no means to know if a hospital is following proper patient experience standards. For this reason, it is important to certify that hospitals and clinics follow own a patient experience policy and apply patient experience standards. This is the reason why the accreditation Patients First was developed. The goal of this study is to test the accreditations’ feasibility in a real-life environment. The accreditation was tested at the Guadarrama Hospital, nearby Madrid in Spain. A mixed team between Guadarrama staff and the Institute for Patient Experience (IEXP) was set up in order to test each of the seven dimensions of the accreditation with a triple data gathering: documentation, participant observation, workshops with patients and also with staff. The certification has proven its utility to improve existing practices, as well as an instrument to set up new working lines in patient experience. The test also seems to prove that the certification’s methodology is robust form a conceptual and operative point of view. Further research is needed to measure direct impact on patients.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
The “wreckage” left by the COVID-19 passage: Thoughts of a palliative care nurse
Get PDFToday, according to Johns Hopkins University, the overall number of global COVID-19 cases has exceeded 244 million with more than four million deaths. Humankind is currently facing an unprecedented global crisis. The impact of this crisis on the healthcare system is potentially far greater than we imagine. This narrative presents a series of stories lived by a palliative care nurse in COVID\u27s time to show how the pandemic itself is a form of inequity and health disparities on the human experience. In my previous narrative, written in April 2020 and published in the Patient Experience Journal Vol. 7, Issue 2, I wrote, “I think how many lives we will lose while we try to maintain life.” Now, we are realizing how many more lives we are going to lose, beside those from COVID-19. Now, we are receiving COVID-19’s spoils and wreckage. Now and in the future, it will be the time for us, as health professionals, to encounter these dramatic stories, the stories of the children of COVID-19, the people who were deeply affected and may have died because of the pandemic but without being infected by the virus.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Patient satisfaction while enrolled in clinical trials: A literature review
Get PDFPatient satisfaction surveys may not adequately reflect organizations that conduct research in patients who enroll in clinical trials. The purpose of this systematic literature review was to summarize the current state of knowledge of patient satisfaction while enrolled in clinical trials utilizing a widely used, validated patient satisfaction instrument. A comprehensive literature search was conducted using CINAHL, EMBASE, PsycInfo, PubMed and Web of Science. Studies were evaluated in terms of clinical trial participation; assessment conducted during or after participation; utilization of a validated instrument; a pharmacological intervention; and the paper was published in English. Only nine studies met this review’s inclusion criteria. Eight studies utilized investigator-developed patient satisfaction instruments and only one study used a widely-used, validated patient satisfaction instrument. Two studies evaluated patient satisfaction during the development of the instrument. Of the nine studies identified, only five patient satisfaction domains were common across the studies and only study evaluated the associations of patient satisfaction responses with clinical outcomes. Given the importance of patient satisfaction surveys, future studies need to focus on this subset of patients enrolled in clinical trials to evaluate a patient’s experience and its impact on protocol compliance and protocol outcomes. Future studies need to focus on domains associated with clinical trial participation and look beyond the current patients’ general expectations about healthcare accessibility, facilities, healthcare team clinical skills, and their ability to focus and listen to the patients’ concerns.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
His Story: “I would be better off dead”
Get PDFA physician shares the story of his brother’s experience in an ICU, how the hospital caring for him failed him as a human being, and how the pain of not being properly cared for and not being treated with dignity and respect left the patient feeling he would be better off dead. In the back of his mind the patient wondered if it was because he is Black. The story prompts the author to reflect on patient rights as a reminder that healthcare is called to serve, to love, to be empathetic, to be respectful, to be humble, to listen, and to be trustworthy. Re-establishing trust with the people and communities that healthcare serves is the hill that all in healthcare must climb together to ensure his brother’s story is never repeated.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Patient and provider perspectives regarding criteria for patient prioritization in two specialized rehabilitation programs
Get PDFTo increase fairness and equity in access to rehabilitation services, a strategy emerging from the literature is patient prioritization. Selecting explicit prioritization criteria is a complex task because it is important to simultaneously consider the objectives of all stakeholders. The of this study was to compare service users’ and service providers’ perspectives regarding patient prioritization criteria in two rehabilitation programs. We conducted a multiple case study in two rehabilitation programs, i.e., a driving evaluation program and a compression garment manufacturing program. We sent a web-based survey asking two groups (patients and providers) to individually produce a set of criteria, then individual answers were coded and combined in a single set of criteria. Stakeholders identified a total of 32 criteria to prioritize patients. Some criteria, such as age, occupation, functional level, pain, absence of caregiver, and time since referral, were considered important by both stakeholders in both programs. Patients and providers tended to have similar opinions about criteria to prioritize patients in waitlists. Taking into consideration the opinions of all stakeholders concerning prioritization criteria is an important part of the decision-making process.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Delivery of patient education and support using an online digital platform for patients undergoing primary hip and knee replacement: The patient’s perspectives
Get PDFThe aim of the present evaluation was to evaluate the use of an online digital platform (ODP) to deliver patient education and support (PES) to patients undergoing total hip replacement (THR) and total knee replacement (TKR) surgery. Six objectives were outlined to assess the following areas: patient engagement; ease of use; understanding of information; quantity of information; aid of recovery; suggestions for improvements. A qualitative service evaluation of the ODP. Participants included patients who were registered to the platform for THR or TKR, were at least 90 days post-surgery and had accessed at least one carepac. Interviews followed a semi-structured schedule and were transcribed and analysed using thematic analysis. A total of 14 participants were interviewed. Three main themes were identified, each with subsequent sub-themes. (1) Health behaviours – internal control of own health, external email prompts, social support. (2) Contribution to recovery – quantity and quality of information available, structured program, suggestions of improvements to better aid recovery. (3) PES delivery – ease of use and accessibility of an ODP, technology advancements, alternative methods of PES. The online PES platform was beneficial for patients undergoing THR and TKR surgery. It aided their understanding of and preparedness for joint replacement surgery, as well as being a supportive tool for rehabilitation and recovery. All patients actively engaged with the ODP and in doing so, developed a greater understanding as a result of the detailed and structured carepacs assigned.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens