Linda Treiber, Christie Emerson, Jenna Shackleford
{"title":"COVID for One: Identifying Obstacles to Self-Management of COVID-19 for Single Adults.","authors":"Linda Treiber, Christie Emerson, Jenna Shackleford","doi":"10.1177/23743735241302742","DOIUrl":"10.1177/23743735241302742","url":null,"abstract":"<p><p>Given the complexities of healthcare provision, it is imperative to understand how single adults experience their interactions with medical professionals and health care organizations, manage care and treatment, and navigate the barriers encountered. This study's purpose is to understand physical and mental health experiences in consideration of social determinants of health, barriers, and coping strategies for single adults diagnosed with COVID-19. An interpretive phenomenology study design was used with 12 individuals who were single and living alone during the COVID-19 pandemic. Semi-structured, open-ended interviews revealed important aspects of the COVID-19 illness experience. Interviews were transcribed for coding and thematic analysis. Analysis of patient interview data identified 4 themes: Dealing with Isolation, Dying Alone, Managing Stigma, and Making a Support Plan. The findings offer insight into what it means to have COVID-19 for single adults who live alone. These findings can be used to help improve the illness experiences of those with COVID-19 and other serious or complex conditions.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241302742"},"PeriodicalIF":1.6,"publicationDate":"2024-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11626653/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142802752","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Patient Engagement in Evidence-Based Practice Frameworks.","authors":"Jarrod Dusin, Jill Peltzer","doi":"10.1177/23743735241302941","DOIUrl":"10.1177/23743735241302941","url":null,"abstract":"<p><p>Evidence-based practice (EBP) is the cornerstone of contemporary healthcare, promoting the integration of scientific evidence, clinical expertise, and patient values to inform clinical decision-making and enhance patient outcomes. While patient engagement is recognized as a critical component of EBP, the extent to which it is incorporated in various EBP frameworks is unclear. This study is a secondary analysis of a scoping review which evaluated EBP frameworks used in healthcare settings. In the current study, our objective was to assess the level of patient engagement within those frameworks. To achieve this, we employed a patient engagement framework which characterizes engagement as a continuum, spanning consultation to involvement to shared leadership/partnership, across 3 healthcare domains: direct care, organizational design and governance, and policymaking. Our analysis revealed a gap in integrating patient values and preferences within EBP frameworks. Only 3 of the assessed frameworks showed a high degree of engagement across all domains. Future research should focus on developing strategies for implementing and evaluating meaningful engagement in EBP.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241302941"},"PeriodicalIF":1.6,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618891/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142787410","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Identifying the Barriers to Self-Wound Management in Singapore-A Preliminary Study in the Primary Healthcare Sector.","authors":"Ling Jia Goh, Xiaoli Zhu","doi":"10.1177/23743735241297491","DOIUrl":"10.1177/23743735241297491","url":null,"abstract":"<p><p>Singapore's growing elderly population faces a rising burden of chronic wounds. Studies have shown the beneficial effects of shared wound management where the patient actively manages their wound with guidance from their healthcare professionals. However, this concept faces challenges due to patient resistance. This study investigates barriers hindering patients' participation in self-wound care. Addressing these barriers to aid the development of targeted strategies can increase the uptake of self-wound care. A locally validated survey was conducted among 328 patients in the polyclinics to assess their hesitancy toward self-wound care. A lower score on the scale indicated a high hesitation toward the concept of self-wound care. Forty-five percent of the participants expressed hesitation toward self-care. Strong family support emerged as a crucial factor in encouraging participation. Conversely, concerns about improper technique, missed diagnoses, and wound infection were prevalent. Logistic difficulties also influenced anxieties. Younger patients and those with higher education exhibited less apprehension. Educational interventions, tailored to address anxieties and empower patients with proper techniques, are critical. Fostering communication within families and examining the process of acquiring wound dressing materials are crucial in overcoming these barriers to self-wound care.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241297491"},"PeriodicalIF":1.6,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11603495/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142751982","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Evaluating Patient Experiences with Patient-Centered and Inclusive Care in Academic Obstetrics and Gynecology Outpatient Clinics.","authors":"Julia Bhuiyan, Charisse Loder","doi":"10.1177/23743735241297620","DOIUrl":"10.1177/23743735241297620","url":null,"abstract":"<p><p>Ensuring patient satisfaction is crucial in obstetrics and gynecology (OB/GYN) care. This study aimed to assess patient satisfaction and experiences with respectful and culturally competent care in an institution's OB/GYN clinics following the initiation of diversity, equity, and inclusion programming. A survey was conducted from September 2021 to February 2022 among patients who had completed outpatient OB/GYN visits, focusing on staff and provider cultural competency, treatment discussion, clinic accommodations, and comfort during sensitive exams. Results from 246 participants indicated that most had positive interactions with clinic staff and healthcare providers. However, disparities emerged, with black or African American participants reporting lower satisfaction and a higher incidence of unfair treatment due to race. These findings highlight the need for additional educational endeavors to equip clinical care teams with skills for providing respectful, inclusive, and culturally competent care. Future qualitative research can further explore patient experiences with inclusive practices in OB/GYN care.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241297620"},"PeriodicalIF":1.6,"publicationDate":"2024-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11583494/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142711421","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rahma Mkuu, Charity Hungu, Francis Makokha, Idethia Harvey, Benda Kithaka, Sharon Mweni, Chemtai Mungo, Daniela Rivero-Mendoza, Jaclyn M Hall, Joystacy Mutegi, Dorothy Ochieng, John Kaindi, Ann K Horsburgh, Carla Fisher, Ramzi G Salloum
{"title":"\"It was not normal, and I had to find a doctor and tell him.\" Kenyan Women's Response to Cervical Cancer Symptoms.","authors":"Rahma Mkuu, Charity Hungu, Francis Makokha, Idethia Harvey, Benda Kithaka, Sharon Mweni, Chemtai Mungo, Daniela Rivero-Mendoza, Jaclyn M Hall, Joystacy Mutegi, Dorothy Ochieng, John Kaindi, Ann K Horsburgh, Carla Fisher, Ramzi G Salloum","doi":"10.1177/23743735241283200","DOIUrl":"10.1177/23743735241283200","url":null,"abstract":"<p><p>This study aimed to characterize the cervical cancer diagnosis experience of Kenyan women undergoing treatment for cervical cancer. We analyzed qualitative interviews with 29 women living in rural Kenya who were currently undergoing cervical cancer treatment at Machakos Cancer Care and Research Centre at Machakos Level 5 Referral Hospital in eastern Kenya. Semistructured qualitative interviews were conducted in Kiswahili and English and then de-identified and translated to English during transcription. The main themes generated were identified through an inductive approach to determine how women experienced cervical cancer symptoms and their process of navigating healthcare. Three themes emerged from the qualitative interviews: (1) delaying seeking care, (2) misinterpreting or misdiagnoses, and (3) grappling with the costly diagnosis process. Women misattributed early signs of cervical cancer to benign conditions. Women sought care only after experiencing severe symptoms. When they sought care, women reported facing lengthy and costly screening processes before receiving a cervical cancer diagnosis. There is a need to educate women on the early symptoms of cervical cancer and to increase the institutional capacity and availability of cervical cancer screening resources in healthcare facilities.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241283200"},"PeriodicalIF":1.6,"publicationDate":"2024-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11580070/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142688763","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sean T Campbell, Joost T P Kortlever, Amanda M Franciscus, Divy Ravindranath, David Ring, Julius A Bishop
{"title":"Factors Associated With Psychiatry Consultation for Musculoskeletal Trauma Patients.","authors":"Sean T Campbell, Joost T P Kortlever, Amanda M Franciscus, Divy Ravindranath, David Ring, Julius A Bishop","doi":"10.1177/23743735241299912","DOIUrl":"10.1177/23743735241299912","url":null,"abstract":"<p><p>In an online, survey-based experiment, musculoskeletal surgeon members of the science of variation group (n = 243) and a group of consult-liaison psychiatrists (n = 18) read 5 hypothetical scenarios of patients recovering from musculoskeletal trauma, each containing 5 randomized patient variables, and indicated their recommendation for psychiatry consultation or not. Factors associated with recommendation for psychiatry consultation included younger age, history of a psychiatric disorder, and pre-injury use of antipsychotic medications, and scenarios involving psychosis, suicidality, hallucinations in the setting of substance withdrawal, and questionable capacity for informed consent, but not with sadness alone. Musculoskeletal surgeons can collaborate with psychiatrists to develop comprehensive care for inpatients with musculoskeletal trauma starting with relatively pressing mental health needs and perhaps expanding into treatment of sadness or worry that can manifest as greater symptom intensity and a delayed recovery trajectory.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241299912"},"PeriodicalIF":1.6,"publicationDate":"2024-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11561979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142628505","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ron D Hays, Julie A Brown, Charleen Mikail, Denise D Quigley
{"title":"Does an \"EZ\" Survey Improve the Data Quality of the Consumer Assessment of Healthcare Providers and Systems (CAHPS<sup>®</sup>) Clinician and Group Survey 3.1?","authors":"Ron D Hays, Julie A Brown, Charleen Mikail, Denise D Quigley","doi":"10.1177/23743735241297622","DOIUrl":"10.1177/23743735241297622","url":null,"abstract":"<p><p>Completing self-administered patient experience surveys is challenging for many patients. We randomized adult patients receiving care from an urban safety net provider to complete the Consumer Assessment of Healthcare Providers and Systems (CAHPS<sup>®</sup>) Clinician and Group Survey 3.1 (CG-CAHPS 3.1), or an \"EZ\" survey created using plain language principles. We compared response rates, item missingness, item-scale correlations, and reliability of patient experience scores based on 264 completed surveys (64% female, 66% Hispanic, 33% high school education or less). The CG-CAHPS 3.1 survey response rate was higher (20% vs 16%), and failure to follow skip instructions was more common for the EZ survey. Internal consistency reliability for multi-item scales was similar, but provider-level reliability was higher for the EZ than for the CG-CAHPS 3.1 survey measures. Cognitive interviews with patients are needed to assess whether the wording of the EZ survey is responsible for the lower response rates and more skip pattern errors. Future studies are also required to provide additional information about the psychometric properties of the CG-CAHPS 3.1 and EZ surveys.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241297622"},"PeriodicalIF":1.6,"publicationDate":"2024-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11565615/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142649261","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rachel Meach, David Carless, Nilihan E M Sanal-Hayes, Marie Mclaughlin, Lawrence D Hayes, Jacqueline L Mair, Jane Ormerod, Natalie Hilliard, Joanne Ingram, Nicholas F Sculthorpe
{"title":"An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app.","authors":"Rachel Meach, David Carless, Nilihan E M Sanal-Hayes, Marie Mclaughlin, Lawrence D Hayes, Jacqueline L Mair, Jane Ormerod, Natalie Hilliard, Joanne Ingram, Nicholas F Sculthorpe","doi":"10.1177/23743735241272158","DOIUrl":"https://doi.org/10.1177/23743735241272158","url":null,"abstract":"<p><p>Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. Adaptive pacing can help people with myalgic encephalomyelitis/chronic fatigue syndrome learn how to manage their energy expenditure thereby reducing their risk of post-exertional malaise (PEM) and other symptoms. Given some symptom similarity, AP also has rehabilitation potential for people experiencing disability from long COVID. The purpose of this study was to explore patient experiences of an AP intervention (the \"PaceMe\" app) to determine its value for individuals experiencing long COVID. Twenty-five participants each took part in two narrative interviews (at intervention start point and at 3-6 months). Data were analyzed using narrative thematic analysis. Our analysis identified 4 themes relating to key benefits of the PaceMe app: (1) PEM management, (2) Support, (3) Validation, and (4) Control and Agency. By illuminating the critical facts and centring patient voices, these findings contribute a better understanding of the experiences and needs of those with long COVID and highlight the value of a digital health intervention as a vital component of rehabilitation.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241272158"},"PeriodicalIF":1.6,"publicationDate":"2024-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11552046/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142628088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Dennis Gurfinkel, Vanessa Owen, Carlee Kreisel, Patrick Hosokawa, Samantha Kluger, Courtney Legge, Jacqueline Calderone, Alisha Eskew, Maryann Waugh, Jay H Shore, Shandra M Brown Levey, Jodi Summers Holtrop
{"title":"Patient Perspectives of Integrated Behavioral Health in Primary Care: A Mixed Methods Analysis.","authors":"Dennis Gurfinkel, Vanessa Owen, Carlee Kreisel, Patrick Hosokawa, Samantha Kluger, Courtney Legge, Jacqueline Calderone, Alisha Eskew, Maryann Waugh, Jay H Shore, Shandra M Brown Levey, Jodi Summers Holtrop","doi":"10.1177/23743735241293877","DOIUrl":"10.1177/23743735241293877","url":null,"abstract":"<p><p>Integrated and collaborative care models, in which mental/behavioral health providers work closely with primary care providers within a primary care setting, help support the quadruple aim of improved health outcomes, patient satisfaction, provider experience, and lower cost. In this paper, we describe patients' general perspectives of integrated care and their unique experiences accessing this care within one health system. Qualitative (interviews with patients) and quantitative (surveys with patients) methods were used to collect and analyze these results separately and together. The results highlight important features to the provision of integrated care from the perspective of patients using integrated care. They include the importance and experience of access, whole-person care and a team-based approach, the availability and use of telehealth when appropriate, having high quality mental health providers, scheduling and service usage suggestions, and means to connect with longer-term services for ongoing mental health care when needed.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241293877"},"PeriodicalIF":1.6,"publicationDate":"2024-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11533315/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142576994","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Behind the Scenes of Isotretinoin: My Journey and Recommendations.","authors":"Nupur Singh","doi":"10.1177/23743735241297488","DOIUrl":"10.1177/23743735241297488","url":null,"abstract":"<p><p>Isotretinoin is a form of Vitamin A used in treatment of severe, refractory acne vulgaris with treatment duration ranging anywhere from 3 to 12 months. The side effects of isotretinoin require monthly dermatologist visits and utilize a risk-management program called iPLEDGE REMS run by the Federal Drug Administration (FDA), which verifies that patients are not pregnant while starting or while taking isotretinoin. The physical and mental side effects experienced on isotretinoin are unique to each patient and can be severely debilitating. My own experience taking isotretinoin for 8 months was filled with multiple unexpected side effects that affected both my physical and mental health. As a result, I strongly believe dermatologists should help patients in analyzing the risk versus benefit profile of isotretinoin, present all other options, and ultimately emphasize patient-provider shared-decision making. Furthermore, at monthly visits dermatologists should be required to implement open dialogue regarding side effects to avoid patient feelings of fear and shame. Additionally, the iPLEDGE REMS system should consider creating a systematic documentation of symptoms to help normalize experiences and guide treatment plans.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241297488"},"PeriodicalIF":1.6,"publicationDate":"2024-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11533305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142576991","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}