To explore how Occupational Performance Coaching (OPC) influences self-management in the daily lives of people with Multiple Sclerosis (PwMS).
Methods
A qualitative study involving 10 PwMS who underwent 6 sessions of telephone OPC over ten weeks. Interpretive description was used as the methodological approach. Participants were interviewed pre- and post-intervention, with thematic analysis performed on transcripts.
Results
Pre-intervention themes included resisting MS, living with MS, ongoing challenges, and strategies. Post-intervention, the theme of resisting MS dissipated, with emergent sub-themes of planning ahead, being consistent, and talking about the plan. Participants reported reduced resistance towards their condition, a shift in their focus from problems towards solutions, and an enhancement of existing strategies and/or development of new strategies used to overcome ongoing challenges in living with MS.
Conclusion
OPC may facilitate a shift in focus towards solutions and enhance self-management strategies in PwMS.
Innovation
This study highlights OPC as a promising and innovative approach for addressing the self-management needs of individuals with MS, emphasizing its potential to enhance meaningful participation by fostering effective coping strategies and proactive attitudes.
{"title":"The experience of people with multiple sclerosis who receive occupational performance coaching","authors":"Niloufar Malakouti , Dorothy Kessler , Marcia Finlayson , Samantha Stephens","doi":"10.1016/j.pecinn.2025.100418","DOIUrl":"10.1016/j.pecinn.2025.100418","url":null,"abstract":"<div><h3>Objective</h3><div>To explore how Occupational Performance Coaching (OPC) influences self-management in the daily lives of people with Multiple Sclerosis (PwMS).</div></div><div><h3>Methods</h3><div>A qualitative study involving 10 PwMS who underwent 6 sessions of telephone OPC over ten weeks. Interpretive description was used as the methodological approach. Participants were interviewed pre- and post-intervention, with thematic analysis performed on transcripts.</div></div><div><h3>Results</h3><div>Pre-intervention themes included resisting MS, living with MS, ongoing challenges, and strategies. Post-intervention, the theme of resisting MS dissipated, with emergent sub-themes of planning ahead, being consistent, and talking about the plan. Participants reported reduced resistance towards their condition, a shift in their focus from problems towards solutions, and an enhancement of existing strategies and/or development of new strategies used to overcome ongoing challenges in living with MS.</div></div><div><h3>Conclusion</h3><div>OPC may facilitate a shift in focus towards solutions and enhance self-management strategies in PwMS.</div></div><div><h3>Innovation</h3><div>This study highlights OPC as a promising and innovative approach for addressing the self-management needs of individuals with MS, emphasizing its potential to enhance meaningful participation by fostering effective coping strategies and proactive attitudes.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100418"},"PeriodicalIF":0.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144588961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-28DOI: 10.1016/j.pecinn.2025.100410
Ronald W. Berkowsky , Brandon Almanza , Jasmine Garcia , Noah Graza
Objective
Given the known benefits of enhanced eHealth literacy in promoting patient health, identifying segments of the patient population at risk for low eHealth literacy can provide avenues for health professionals to promote enhanced eHealth skills through targeted outreach and intervention. The purpose of this study was to examine factors associated with eHealth literacy and to identify disparities in eHealth literacy in California.
Methods
Using survey data from the 2020 CALSPEAKS survey, ordinary least squares regression was performed on measures of self-assessed eHealth literacy to identify associated factors (N = 780).
Results
Findings showed that the strongest and most consistent predictors of eHealth literacy included self-rated health, a proxy measure for religiosity, Internet use characteristics, and personality traits (i.e., conscientiousness, neuroticism).
Conclusion
Overall, Californians report relatively high levels of eHealth literacy – but, those seeking to increase eHealth literacy among patients in the state may benefit from tailoring digital health information and eHealth interventions based on the significant associations found.
Innovation
Few studies have examined the impacts of personality characteristics on eHealth literacy using a large sample – findings elucidate innovative pathways to enhancing eHealth literacy (e.g., accommodating online content or training interventions to those reporting low conscientiousness or high neuroticism).
{"title":"Factors predicting eHealth literacy: A profile of California, USA","authors":"Ronald W. Berkowsky , Brandon Almanza , Jasmine Garcia , Noah Graza","doi":"10.1016/j.pecinn.2025.100410","DOIUrl":"10.1016/j.pecinn.2025.100410","url":null,"abstract":"<div><h3>Objective</h3><div>Given the known benefits of enhanced eHealth literacy in promoting patient health, identifying segments of the patient population at risk for low eHealth literacy can provide avenues for health professionals to promote enhanced eHealth skills through targeted outreach and intervention. The purpose of this study was to examine factors associated with eHealth literacy and to identify disparities in eHealth literacy in California.</div></div><div><h3>Methods</h3><div>Using survey data from the 2020 CALSPEAKS survey, ordinary least squares regression was performed on measures of self-assessed eHealth literacy to identify associated factors (<em>N</em> = 780).</div></div><div><h3>Results</h3><div>Findings showed that the strongest and most consistent predictors of eHealth literacy included self-rated health, a proxy measure for religiosity, Internet use characteristics, and personality traits (i.e., conscientiousness, neuroticism).</div></div><div><h3>Conclusion</h3><div>Overall, Californians report relatively high levels of eHealth literacy – but, those seeking to increase eHealth literacy among patients in the state may benefit from tailoring digital health information and eHealth interventions based on the significant associations found.</div></div><div><h3>Innovation</h3><div>Few studies have examined the impacts of personality characteristics on eHealth literacy using a large sample – findings elucidate innovative pathways to enhancing eHealth literacy (e.g., accommodating online content or training interventions to those reporting low conscientiousness or high neuroticism).</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100410"},"PeriodicalIF":0.0,"publicationDate":"2025-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144518195","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-27DOI: 10.1016/j.pecinn.2025.100415
Rebecca K. Rudel , Emma Powers , Kirsten Austad , Shana A.B. Burrowes , Zaire Couloute , Anais E.C. Smith , Christine Prifti , J. Morgan Freiman , Robin Wigmore , Allan Walkey , Jacqueline M. Hicks , Tamar F. Barlam , Mari-Lynn Drainoni
Objective
Patient demand often drives inappropriate antibiotic prescribing for acute respiratory tract infections (ARTI). This study aimed to develop novel culturally- and linguistically-tailored patient education material regarding appropriate ARTI care.
Methods
This qualitative study used a four-phase approach to develop single-page English, Spanish, and Haitian Creole patient education materials for appropriate ARTI treatment designed for clinical use: 1) material development informed by pre-existing materials, 2) learner verification, 3) revision, and 4) transcreation. Patient and provider focus groups and interviews were conducted at three Massachusetts health systems. Transcripts were coded and analyzed using a framework informed by the Patient Education Materials Assessment Tool.
Results
Twenty-six providers and 48 patients (27 English, 10 Spanish, 11 Haitian Creole speaking) participated. Participants suggested improving readability by replacing text blocks with bulleted lists and usability by providing self-care solutions. The transcreation process resulted in literal translations that were unclear to Spanish and Haitian Creole speakers, who provided culturally-appropriate suggestions.
Innovation
Patient education materials are co-created with diverse patient and provider populations to create culturally-tailored materials, available in multiple languages, for ARTI treatment.
Conclusion
Learner verification, revision, and transcreation can result in understandable and actionable materials for patients in multiple languages. Materials may help decrease demand for and rates of inappropriate antibiotic prescribing for ARTI.
{"title":"Using learner verification and transcreation to develop multicultural patient education materials for acute respiratory tract infections to decrease inappropriate antibiotic prescribing","authors":"Rebecca K. Rudel , Emma Powers , Kirsten Austad , Shana A.B. Burrowes , Zaire Couloute , Anais E.C. Smith , Christine Prifti , J. Morgan Freiman , Robin Wigmore , Allan Walkey , Jacqueline M. Hicks , Tamar F. Barlam , Mari-Lynn Drainoni","doi":"10.1016/j.pecinn.2025.100415","DOIUrl":"10.1016/j.pecinn.2025.100415","url":null,"abstract":"<div><h3>Objective</h3><div>Patient demand often drives inappropriate antibiotic prescribing for acute respiratory tract infections (ARTI). This study aimed to develop novel culturally- and linguistically-tailored patient education material regarding appropriate ARTI care.</div></div><div><h3>Methods</h3><div>This qualitative study used a four-phase approach to develop single-page English, Spanish, and Haitian Creole patient education materials for appropriate ARTI treatment designed for clinical use: 1) material development informed by pre-existing materials, 2) learner verification, 3) revision, and 4) transcreation. Patient and provider focus groups and interviews were conducted at three Massachusetts health systems. Transcripts were coded and analyzed using a framework informed by the Patient Education Materials Assessment Tool.</div></div><div><h3>Results</h3><div>Twenty-six providers and 48 patients (27 English, 10 Spanish, 11 Haitian Creole speaking) participated. Participants suggested improving readability by replacing text blocks with bulleted lists and usability by providing self-care solutions. The transcreation process resulted in literal translations that were unclear to Spanish and Haitian Creole speakers, who provided culturally-appropriate suggestions.</div></div><div><h3>Innovation</h3><div>Patient education materials are co-created with diverse patient and provider populations to create culturally-tailored materials, available in multiple languages, for ARTI treatment.</div></div><div><h3>Conclusion</h3><div>Learner verification, revision, and transcreation can result in understandable and actionable materials for patients in multiple languages. Materials may help decrease demand for and rates of inappropriate antibiotic prescribing for ARTI.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100415"},"PeriodicalIF":0.0,"publicationDate":"2025-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144534893","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-27DOI: 10.1016/j.pecinn.2025.100417
Sandra L. Carroll , Michael McGillion , Julia Abelson , Alexandre Berkesse , Jeff S. Healey
Objective
We describe a Patient Engagement Day from the Canadian Stroke Prevention Network (C-SPIN). Patients and family members were engaged as patient partners to generate and prioritize future direction for Atrial Fibrillation (AF) research.
Methods
A facilitated group discussion methodology was used that included a nominal group brainstorming and decision-making technique designed to foster participation and idea generation.
Results
Twenty-four patient partners attended. Priorities related to: 1) need for a curative focus and not new medication (84 %), 2) identification of triggers (53 %), and 3) home-based/remote monitoring (53 %). Use of the Public and Patient Engagement Evaluation Tool (PPEET) found patient partners understood the intent of the day, with its objectives being met. Findings highlighted knowledge gaps by patient partners that were previously thought to be understood.
Conclusion
Patient partners could benefit from more focused education about atrial fibrillation. Notably, the priorities identified by patient partners were new to the research team, reinforcing the importance of engaging with the population who will be impacted by the research.
Innovation
Little research has been undertaken examining patient partner priorities regarding atrial fibrillation research. This work highlights patient partners' interest in providing input and shaping future research endeavors.
{"title":"Engaging patient partners to identify research priorities for atrial fibrillation: Results from a patient engagement day","authors":"Sandra L. Carroll , Michael McGillion , Julia Abelson , Alexandre Berkesse , Jeff S. Healey","doi":"10.1016/j.pecinn.2025.100417","DOIUrl":"10.1016/j.pecinn.2025.100417","url":null,"abstract":"<div><h3>Objective</h3><div>We describe a Patient Engagement Day from the Canadian Stroke Prevention Network (C-SPIN). Patients and family members were engaged as patient partners to generate and prioritize future direction for Atrial Fibrillation (AF) research.</div></div><div><h3>Methods</h3><div>A facilitated group discussion methodology was used that included a nominal group brainstorming and decision-making technique designed to foster participation and idea generation.</div></div><div><h3>Results</h3><div>Twenty-four patient partners attended. Priorities related to: 1) need for a curative focus and not new medication (84 %), 2) identification of triggers (53 %), and 3) home-based/remote monitoring (53 %). Use of the Public and Patient Engagement Evaluation Tool (PPEET) found patient partners understood the intent of the day, with its objectives being met. Findings highlighted knowledge gaps by patient partners that were previously thought to be understood.</div></div><div><h3>Conclusion</h3><div>Patient partners could benefit from more focused education about atrial fibrillation. Notably, the priorities identified by patient partners were new to the research team, reinforcing the importance of engaging with the population who will be impacted by the research.</div></div><div><h3>Innovation</h3><div>Little research has been undertaken examining patient partner priorities regarding atrial fibrillation research. This work highlights patient partners' interest in providing input and shaping future research endeavors.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100417"},"PeriodicalIF":0.0,"publicationDate":"2025-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144572552","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-27DOI: 10.1016/j.pecinn.2025.100416
Authors: Lana Kluit , Annechien Beumer , Coen A.M. van Bennekom , Angela G.E.M. de Boer , Astrid de Wind
Background
Clinical Work-Integrating Care (CWIC) brings important attention to issues emerging from the interrelationship between health and work. Yet, for various reasons, CWIC is not routinely delivered in clinical healthcare. This study focuses on why medical specialists do or do not provide CWIC, applying a reasoned action approach.
Objective
To examine the associations between attitude, perceived norm, and perceived behavioral control with the provision of CWIC.
Methods
A cross-sectional survey was distributed to Dutch medical specialists. Multivariable regression analysis was used to investigate the associations between attitude, perceived norm, and perceived behavioral control on the ability to provide CWIC with the frequency of actual CWIC provision.
Results
In total, 160 medical specialists completed the survey. The sample consisted of 12 surgical specialists (8 %), 113 non-surgical specialists (71 %), and 35 rehabilitation specialists (22 %). After adjustment for confounders, a favorable attitude was significantly associated with providing CWIC (p < .01), while perceived norm and perceived control were not (p = .74 and p = .85, respectively).
Conclusions
Medical specialists who expressed a favorable attitude towards addressing work during consultations were more likely to provide CWIC. Thus, addressing specialists' attitudes is an important element to implementing CWIC.
{"title":"The association between attitude, perceived norm, and perceived behavioral control with the provision of Clinical Work-Integrating Care: A reasoned action approach","authors":"Authors: Lana Kluit , Annechien Beumer , Coen A.M. van Bennekom , Angela G.E.M. de Boer , Astrid de Wind","doi":"10.1016/j.pecinn.2025.100416","DOIUrl":"10.1016/j.pecinn.2025.100416","url":null,"abstract":"<div><h3>Background</h3><div>Clinical Work-Integrating Care (CWIC) brings important attention to issues emerging from the interrelationship between health and work. Yet, for various reasons, CWIC is not routinely delivered in clinical healthcare. This study focuses on why medical specialists do or do not provide CWIC, applying a reasoned action approach.</div></div><div><h3>Objective</h3><div>To examine the associations between attitude, perceived norm, and perceived behavioral control with the provision of CWIC.</div></div><div><h3>Methods</h3><div>A cross-sectional survey was distributed to Dutch medical specialists. Multivariable regression analysis was used to investigate the associations between attitude, perceived norm, and perceived behavioral control on the ability to provide CWIC with the frequency of actual CWIC provision.</div></div><div><h3>Results</h3><div>In total, 160 medical specialists completed the survey. The sample consisted of 12 surgical specialists (8 %), 113 non-surgical specialists (71 %), and 35 rehabilitation specialists (22 %). After adjustment for confounders, a favorable attitude was significantly associated with providing CWIC (<em>p</em> < .01), while perceived norm and perceived control were not (<em>p</em> = .74 and <em>p</em> = .85, respectively).</div></div><div><h3>Conclusions</h3><div>Medical specialists who expressed a favorable attitude towards addressing work during consultations were more likely to provide CWIC. Thus, addressing specialists' attitudes is an important element to implementing CWIC.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100416"},"PeriodicalIF":0.0,"publicationDate":"2025-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144563783","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-25DOI: 10.1016/j.pecinn.2025.100414
Betsy Sleath , Abena A. Adjei , Jeremy Lowery , Mckenna Knock , Bethany Beznos , Delesha M. Carpenter , Casey R. Tak , Kim James , Michelle Geiser , Nacire Garcia , Charles Lee
Objective
To co-design resources to empower youth to ask questions about vaping and substance use and to disseminate the developed materials in Western North Carolina.
Methods
Two youth advisory boards were formed in Western North Carolina in partnership with two community organizations. Focus groups were conducted with youth, parents, and other stakeholders on what resources to design and how to disseminate them. Dissemination utilized a three-pronged approach which included emailing organizations, in-person events, and social media campaigns. Website analytics were measured utilizing Google Analytics. The intrinsic analytics from X and Instagram were also tracked.
Results
Eleven videos about vaping and substance use were developed along with question prompt lists, a trivia game, and a toolkit for use by educators. There were 1175 impressions on X, and the substance use and vaping content posted on Instagram reached 581 accounts during the dissemination period. The substance use and vaping videos were viewed over 500 times during the dissemination period. Over 10,000 students in Western North Carolina were reached through in-person events.
Conclusion
Videos and other resources on the prevention or cessation of substance use and vaping were created and disseminated using a three-pronged approach. The co-designed materials can be used by youth to empower them to ask health care providers, educators, and other adults questions about vaping and substance use.
Innovation
The vaping and substance use resources were developed for youth by youth. The materials were placed on a website where individuals can anonymously go to learn more about these topics.
{"title":"Co-creating and disseminating substance use and vaping educational videos, question prompt lists, and other resources in partnership with community organizations and youth in Western North Carolina","authors":"Betsy Sleath , Abena A. Adjei , Jeremy Lowery , Mckenna Knock , Bethany Beznos , Delesha M. Carpenter , Casey R. Tak , Kim James , Michelle Geiser , Nacire Garcia , Charles Lee","doi":"10.1016/j.pecinn.2025.100414","DOIUrl":"10.1016/j.pecinn.2025.100414","url":null,"abstract":"<div><h3>Objective</h3><div>To co-design resources to empower youth to ask questions about vaping and substance use and to disseminate the developed materials in Western North Carolina.</div></div><div><h3>Methods</h3><div>Two youth advisory boards were formed in Western North Carolina in partnership with two community organizations. Focus groups were conducted with youth, parents, and other stakeholders on what resources to design and how to disseminate them. Dissemination utilized a three-pronged approach which included emailing organizations, in-person events, and social media campaigns. Website analytics were measured utilizing Google Analytics. The intrinsic analytics from X and Instagram were also tracked.</div></div><div><h3>Results</h3><div>Eleven videos about vaping and substance use were developed along with question prompt lists, a trivia game, and a toolkit for use by educators. There were 1175 impressions on X, and the substance use and vaping content posted on Instagram reached 581 accounts during the dissemination period. The substance use and vaping videos were viewed over 500 times during the dissemination period. Over 10,000 students in Western North Carolina were reached through in-person events.</div></div><div><h3>Conclusion</h3><div>Videos and other resources on the prevention or cessation of substance use and vaping were created and disseminated using a three-pronged approach. The co-designed materials can be used by youth to empower them to ask health care providers, educators, and other adults questions about vaping and substance use.</div></div><div><h3>Innovation</h3><div>The vaping and substance use resources were developed for youth by youth. The materials were placed on a website where individuals can anonymously go to learn more about these topics.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100414"},"PeriodicalIF":0.0,"publicationDate":"2025-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144517179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-24DOI: 10.1016/j.pecinn.2025.100411
Aleksandrina Skvortsova , Stephanie Stiel , Kambiz Afshar , Hanna A.A. Röwer , Claudia Bausewein , Irene Hartigan , Mohamad M. Saab , Sandra Martins Pereira , Pablo Hernández-Marrero , Jan Hrdlička , Jiri Wild , Kateřina Rusinová , Martin Loučka , Lucie Hrdličková , Martin Zielina , Cathy Payne , Liesbeth M. Van Vliet
Objectives
This study investigates i) acceptability, ii) predictors of intention to use, iii) barriers and facilitators, and iv) perceived advantages and disadvantages of incorporating virtual reality (VR) into serious illness communication training from the perspective of health professions educators in Europe.
Methods
An online survey was distributed using snowball sampling across health professions educators involved in the creation and/or delivery of difficult communication courses (as educators, developers, coordinators).
Results
Seventy-five educators from 11 European countries involved in teaching serious illness communication skills completed the survey. While educators viewed VR positively and saw it as useful, their intention to implement it was moderate, possibly, due to low compatibility with current teaching methods and social norms. Major barriers reported by participants included financial constraints (62.7 %) and lack of VR training (54.7 %), while key facilitators were training availability (22 %) and technical support (11 %).
Conclusion/innovation
Educators perceive VR as a potential supplemental tool in difficult communication education; however, overcoming financial, training, and integration barriers is essential for its broader adoption and curricular integration. Further research is necessary to validate VR's effectiveness in developing the nuanced communication skills critical for serious illness communication.
Innovation
VR technology is a promising innovative tool for medical communication training.
{"title":"Acceptability of virtual reality for training health professions students in serious illness communication: A cross-sectional study with educators","authors":"Aleksandrina Skvortsova , Stephanie Stiel , Kambiz Afshar , Hanna A.A. Röwer , Claudia Bausewein , Irene Hartigan , Mohamad M. Saab , Sandra Martins Pereira , Pablo Hernández-Marrero , Jan Hrdlička , Jiri Wild , Kateřina Rusinová , Martin Loučka , Lucie Hrdličková , Martin Zielina , Cathy Payne , Liesbeth M. Van Vliet","doi":"10.1016/j.pecinn.2025.100411","DOIUrl":"10.1016/j.pecinn.2025.100411","url":null,"abstract":"<div><h3>Objectives</h3><div>This study investigates i) acceptability, ii) predictors of intention to use, iii) barriers and facilitators, and iv) perceived advantages and disadvantages of incorporating virtual reality (VR) into serious illness communication training from the perspective of health professions educators in Europe.</div></div><div><h3>Methods</h3><div>An online survey was distributed using snowball sampling across health professions educators involved in the creation and/or delivery of difficult communication courses (as educators, developers, coordinators).</div></div><div><h3>Results</h3><div>Seventy-five educators from 11 European countries involved in teaching serious illness communication skills completed the survey. While educators viewed VR positively and saw it as useful, their intention to implement it was moderate, possibly, due to low compatibility with current teaching methods and social norms. Major barriers reported by participants included financial constraints (62.7 %) and lack of VR training (54.7 %), while key facilitators were training availability (22 %) and technical support (11 %).</div></div><div><h3>Conclusion/innovation</h3><div>Educators perceive VR as a potential supplemental tool in difficult communication education; however, overcoming financial, training, and integration barriers is essential for its broader adoption and curricular integration. Further research is necessary to validate VR's effectiveness in developing the nuanced communication skills critical for serious illness communication.</div></div><div><h3>Innovation</h3><div>VR technology is a promising innovative tool for medical communication training.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100411"},"PeriodicalIF":0.0,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144517814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-24DOI: 10.1016/j.pecinn.2025.100412
Stephanie K. Kukora , Kerry Ryan , Haoyang Yan , Rachel Clarke , Cynthia Arslanian-Engoren , Kenneth Pituch
Objective
To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.
Patient involvement
To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.
Methods
After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.
Results
Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.
Discussion/practical value
Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.
{"title":"Development and acceptability testing of a tracheostomy decision support video for parents","authors":"Stephanie K. Kukora , Kerry Ryan , Haoyang Yan , Rachel Clarke , Cynthia Arslanian-Engoren , Kenneth Pituch","doi":"10.1016/j.pecinn.2025.100412","DOIUrl":"10.1016/j.pecinn.2025.100412","url":null,"abstract":"<div><h3>Objective</h3><div>To develop a clinical, bedside intervention with peer parent narratives to help parents understand the shared decision-making (SDM) process, their role in the decision, and other parents' considerations in this context.</div></div><div><h3>Patient involvement</h3><div>To ensure that the intervention reflected parents' needs, we identified eight parents who had faced a tracheostomy decision for their child and were willing to talk about their experiences on a video recording. Half of the parents had chosen tracheostomy; some children of parents making either choice had died. We included parents of diverse racial backgrounds whose children had different diagnoses. Parent interviews, along with an explanation of SDM for parents, were edited into a 17-min video guided by iterative feedback from parents and clinicians. Additional parents of children with tracheostomies then viewed the video and shared perceptions about acceptability.</div></div><div><h3>Methods</h3><div>After an iterative process of developing the video in partnership with parents, we piloted the video with 18 parents in 16 online interviews (two were couples) who were not part of video development but had faced a tracheostomy decision for their child within the last three years. Participants were asked about their experiences, viewed the video, and provided verbal feedback and reflection on the acceptability of the video and its anticipated clinical use. Interviews were transcribed and qualitatively analyzed, focusing on feedback.</div></div><div><h3>Results</h3><div>Parents who viewed the video provided generally favorable feedback, describing the video as “helpful,” and appreciating the diversity of the cases represented and the perspectives offered. They felt that it could empower parents to ask questions and voice their opinions to the medical team. Parents noted feeling a connection to the emotions expressed by the parents in the video and felt it would help parents facing these decisions to feel less alone.</div></div><div><h3>Discussion/practical value</h3><div>Video education focusing on parents' perspectives may help support the SDM process for pediatric tracheostomy and complement other strategies to support parent engagement. Similar approaches may be valuable in explaining SDM to patients or families facing other serious decisions.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100412"},"PeriodicalIF":0.0,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144534829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-24DOI: 10.1016/j.pecinn.2025.100413
Isabel Hamm , Kerstin Dittmer , Frank Vitinius , David Reinert , Marc Hoemberg , Remo Kamm-Thonwart , Rainer Misgeld , Theresia Krieger
Objectives
The study aimed to (1) gain a comprehensive, multi-perspective understanding of the preparation, transmission and follow-up of Breaking Bad News (BBN) in pediatric oncology, and (2) to develop and weigh recommendations for BBN in pediatric oncology.
Methods
A mixed-methods Participatory Group Delphi (PGD) study was conducted to develop recommendations for the preparation, transmission, and follow-up of BBN. Practice-based evidence (PBE) was collected from four groups (N = 14 organizations) with different BBN experiences: (1) patient and family representatives, (2) healthcare providers, (3) psychosocial supporters, and (4) health services researchers.
Results
The PGD process (16 interviews, three focus group discussions and two surveys) resulted in 166 recommendations (preparation: 55; transmission: 45; follow-up: 66).
Conclusion
The PGD approach provided a structured framework for collecting PBE and developing, refining and consolidating recommendations on BBN in pediatric oncology. Involving all affected by BBN was crucial for addressing the complexity of BBN in the recommendations. The mixed-methods design enhanced the reliability and practical applicability of the recommendations.
Innovation
To our knowledge, no prior research in pediatric oncology has systematically integrated existing PBE into a structured set of recommendations in Germany. This study introduces a novel PGD process in this field in Germany, incorporating three key innovations: (1) a participatory methodology ensuring active stakeholder engagement, (2) a uniquely diverse expert panel including those affected by pediatric cancer, and (3) a systematic, iterative recommendation development approach rooted in PBE. This methodology results in a Delphi process that diverges significantly from classical approaches, offering a collaborative and structured framework for evidence synthesis.
目的本研究旨在(1)全面、多角度地了解儿科肿瘤学突发坏消息（Breaking Bad News， BBN）的准备、传播和随访；(2)制定和权衡儿科肿瘤学中BBN的建议。方法采用混合方法参与组德尔菲（PGD）研究，对BBN的制备、传播和随访提出建议。基于实践的证据（PBE）来自四组（N = 14个组织），他们具有不同的BBN经验：(1)患者和家属代表，(2)医疗保健提供者，(3)社会心理支持者，(4)卫生服务研究人员。PGD过程（16次访谈，3次焦点小组讨论和2次调查）产生166条建议(准备：55；传输:45;追问:66)。结论PGD方法为收集PBE和制定、完善和巩固儿科肿瘤学BBN建议提供了一个结构化框架。让所有受BBN影响的人参与进来，对于在建议中处理BBN的复杂性至关重要。混合方法的设计提高了建议的可靠性和实用性。据我们所知，在德国还没有儿科肿瘤学的研究将现有的PBE系统地整合到一套结构化的建议中。本研究在德国该领域引入了一种新颖的PGD流程，包括三个关键创新：(1)确保利益相关者积极参与的参与式方法，(2)包括儿童癌症患者在内的独特多样化专家小组，以及(3)基于PBE的系统，迭代的建议开发方法。这种方法产生的德尔菲过程与经典方法有很大的不同，为证据合成提供了一个协作和结构化的框架。
{"title":"Developing multi-perspective practice-based evidence theses for breaking bad news in the German pediatric oncology: A participatory group Delphi study","authors":"Isabel Hamm , Kerstin Dittmer , Frank Vitinius , David Reinert , Marc Hoemberg , Remo Kamm-Thonwart , Rainer Misgeld , Theresia Krieger","doi":"10.1016/j.pecinn.2025.100413","DOIUrl":"10.1016/j.pecinn.2025.100413","url":null,"abstract":"<div><h3>Objectives</h3><div>The study aimed to (1) gain a comprehensive, multi-perspective understanding of the preparation, transmission and follow-up of Breaking Bad News (BBN) in pediatric oncology, and (2) to develop and weigh recommendations for BBN in pediatric oncology.</div></div><div><h3>Methods</h3><div>A mixed-methods Participatory Group Delphi (PGD) study was conducted to develop recommendations for the preparation, transmission, and follow-up of BBN. Practice-based evidence (PBE) was collected from four groups (<em>N</em> = 14 organizations) with different BBN experiences: (1) patient and family representatives, (2) healthcare providers, (3) psychosocial supporters, and (4) health services researchers.</div></div><div><h3>Results</h3><div>The PGD process (16 interviews, three focus group discussions and two surveys) resulted in 166 recommendations (preparation: 55; transmission: 45; follow-up: 66).</div></div><div><h3>Conclusion</h3><div>The PGD approach provided a structured framework for collecting PBE and developing, refining and consolidating recommendations on BBN in pediatric oncology. Involving all affected by BBN was crucial for addressing the complexity of BBN in the recommendations. The mixed-methods design enhanced the reliability and practical applicability of the recommendations.</div></div><div><h3>Innovation</h3><div>To our knowledge, no prior research in pediatric oncology has systematically integrated existing PBE into a structured set of recommendations in Germany. This study introduces a novel PGD process in this field in Germany, incorporating three key innovations: (1) a participatory methodology ensuring active stakeholder engagement, (2) a uniquely diverse expert panel including those affected by pediatric cancer, and (3) a systematic, iterative recommendation development approach rooted in PBE. This methodology results in a Delphi process that diverges significantly from classical approaches, offering a collaborative and structured framework for evidence synthesis.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100413"},"PeriodicalIF":0.0,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144522411","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-06-07DOI: 10.1016/j.pecinn.2025.100409
Caroline Salafia , Smita Banerjee , Jada G. Hamilton , Elizabeth Schofield , Yuelin Li , David B. Buller , Keith Hunley , Andrew L. Sussman , Dolores D. Guest , Kimberly A. Kaphingst , Marianne Berwick , Jennifer L. Hay
Objective
Given the promise of family communication to prompt cancer risk awareness, we examined how an offer for skin cancer genetic testing may prompt family cancer communication.
Methods
Primary care patients (N = 415, 45 % Hispanic) in New Mexico were randomized to a melanocortin-1 receptor (MC1R) genetic test invitation or usual care. We assessed whether family communication (frequency, targets of communication, and topics) differed based on whether participants were randomized to usual care, refused genetic testing, were tested and received either average- or higher-risk feedback.
Results
Findings showed no significant differences in frequency of family communication based on intervention exposure. Those who were tested and received higher-risk feedback displayed the highest levels of communication with certain targets, such as fathers. Some communication topics, such as the participant's risk of skin cancer, were discussed more by participants who were tested (both average- and higher-risk feedback) than those in usual care.
Conclusion
Findings highlight that an offer for skin cancer genetic testing may prompt aspects of family communication, such as discussion surrounding personal skin cancer risk.
Innovation
This study examined various elements of family communication after an offer for skin cancer genetic testing.
{"title":"Prospective changes in primary care patients' family communication after skin cancer genetic test offer","authors":"Caroline Salafia , Smita Banerjee , Jada G. Hamilton , Elizabeth Schofield , Yuelin Li , David B. Buller , Keith Hunley , Andrew L. Sussman , Dolores D. Guest , Kimberly A. Kaphingst , Marianne Berwick , Jennifer L. Hay","doi":"10.1016/j.pecinn.2025.100409","DOIUrl":"10.1016/j.pecinn.2025.100409","url":null,"abstract":"<div><h3>Objective</h3><div>Given the promise of family communication to prompt cancer risk awareness, we examined how an offer for skin cancer genetic testing may prompt family cancer communication.</div></div><div><h3>Methods</h3><div>Primary care patients (<em>N</em> = 415, 45 % Hispanic) in New Mexico were randomized to a melanocortin-1 receptor (<em>MC1R)</em> genetic test invitation or usual care. We assessed whether family communication (frequency, targets of communication, and topics) differed based on whether participants were randomized to usual care, refused genetic testing, were tested and received either average- or higher-risk feedback.</div></div><div><h3>Results</h3><div>Findings showed no significant differences in frequency of family communication based on intervention exposure. Those who were tested and received higher-risk feedback displayed the highest levels of communication with certain targets, such as fathers. Some communication topics, such as the participant's risk of skin cancer, were discussed more by participants who were tested (both average- and higher-risk feedback) than those in usual care.</div></div><div><h3>Conclusion</h3><div>Findings highlight that an offer for skin cancer genetic testing may prompt aspects of family communication, such as discussion surrounding personal skin cancer risk.</div></div><div><h3>Innovation</h3><div>This study examined various elements of family communication after an offer for skin cancer genetic testing.</div></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"7 ","pages":"Article 100409"},"PeriodicalIF":0.0,"publicationDate":"2025-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144270751","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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