Journal of Participatory Medicine最新文献

{"title":"Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation.","authors":"Jennifer Lynn Martindale-Adams,&nbsp;Carolyn Davis Clark,&nbsp;Jessica Roxy Martin,&nbsp;Charles Richard Henderson,&nbsp;Linda Olivia Nichols","doi":"10.2196/35318","DOIUrl":"https://doi.org/10.2196/35318","url":null,"abstract":"<p><strong>Background: </strong>Although there are many interventions to support caregivers, SMS text messaging has not been used widely.</p><p><strong>Objective: </strong>In this paper, we aimed to describe development of the Department of Veterans Affairs (VA) Annie Stress Management SMS text messaging protocol for caregivers of veterans, its pilot test, and subsequent national rollout.</p><p><strong>Methods: </strong>The stress management protocol was developed with text messages focusing on education, motivation, and stress-alleviating activities based on the Resources for Enhancing All Caregivers Health (REACH) VA caregiver intervention. This protocol was then tested in a pilot study. On the basis of the pilot study results, a national rollout of the protocol was executed and evaluated. Caregivers were referred from VA facilities nationally for the pilot and national rollout. Pilot caregivers were interviewed by telephone; national rollout caregivers were sent a web-based evaluation link at 6 months. For both evaluations, questions were scored on a Likert scale ranging from completely disagree to completely agree. For both the pilot and national rollout, quantitative data were analyzed with frequencies and means; themes were identified from open-ended qualitative responses.</p><p><strong>Results: </strong>Of the 22 caregivers in the pilot study, 18 (82%) provided follow-up data. On a 5-point scale, they reported text messages had been useful in managing stress (mean score 3.8, SD 1.1), helping them take care of themselves (mean score 3.7, SD 1.3), and making them feel cared for (mean score 4.1, SD 1.7). Texts were easy to read (mean score 4.5, SD 1.2), did not come at awkward times (mean score 2.2, SD 1.4), were not confusing (mean score 1.1, SD 0.2), and did not cause problems in responding (mean score 1.9, 1.1); however, 83% (15/18) of caregivers did not want to request an activity when stressed. Consequently, the national protocol did not require caregivers to respond. In the national rollout, 22.17% (781/3522) of the eligible caregivers answered the web-based survey and reported that the messages had been useful in managing stress (mean score 4.3, SD 0.8), helping them take care of themselves (mean score 4.3, SD 0.8) and loved ones (mean score 4.2, SD 0.8), and making them feel cared for (mean score 4.5, SD 0.8). Almost two-thirds (509/778, 65.4%) of the participants tried all or most of the strategies. A total of 5 themes were identified. The messages were appreciated, helped with self-care, and made them feel less alone, looking on Annie as a friend. The caregivers reported that the messages were on target and came when they were most needed and did not want them to stop. This success has led to four additional caregiver texting protocols: bereavement, dementia behaviors and stress management, (posttraumatic stress disorder) PTSD behaviors, and taking care of you, with 7274 caregivers enrolled as of February 2022.</p><p><strong>Conclus","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e35318"},"PeriodicalIF":0.0,"publicationDate":"2022-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9623465/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33518878","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":"A Health Equity-Oriented Research Agenda Requires Comprehensive Community Engagement.","authors":"Kevin Rice,&nbsp;Joshua Seidman,&nbsp;Oneil Mahoney","doi":"10.2196/37657","DOIUrl":"https://doi.org/10.2196/37657","url":null,"abstract":"<p><p>Health policy and research communities have taken new approaches to addressing health equity, going beyond traditional methods that often excluded the contributions of health care consumers and persons with lived experience. This reevaluation has the potential to drive critical improvements in how we conduct research and innovate policy toward reducing health and health care disparities in the United States. Such considerations have led Fountain House, the founder of the Clubhouse model for peer-based psychosocial rehabilitation for persons with histories of serious mental illness, to incorporate community-based participatory action research (CBPAR) protocols within their research and service programs. The combination of CBPAR research methods within novel participatory care settings like Clubhouse programs presents unique and informative opportunities for the advancement of innovative health equity approaches to consumer empowerment in health care. In this piece, the authors (two staff researchers and one member researcher) propose how CBPAR research methods conducted in Clubhouses can uniquely advance equity-focused research methods, and how the benefit and enhancements from equity-focused research are continuously applied, practiced, and accountable to the communities within which the research is conducted. Embedding CBPAR practices within participatory care settings like Clubhouses, creates novel opportunities for research work to not only become more equitable but also become a part of the rehabilitative process, empowering the main beneficiaries of the research with the means to sustain and achieve further improvements for themselves. Such experiences are particularly important within rehabilitation settings, where there is a process of reclaiming empowerment and self-efficacy over a disability or illness and the social circumstances surrounding those conditions. Different stakeholders can all play important roles in advancing health equity-oriented research agendas by leveraging CBPAR principles. Academics and others in the research community can more comprehensively embed CBPAR methods into the design of their research studies. A critical link exists among how researchers conduct their studies, how providers organize care delivery and support, and how health plans pay for and evaluate care. CBPAR-generated research needs to fully engage clinical teams to ensure that ongoing community-involved care settings have direct applications to real-world care delivery. It is equally important that providers fully engage with their communities as they adjust their approaches to supporting the populations they serve.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e37657"},"PeriodicalIF":0.0,"publicationDate":"2022-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9568816/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40385885","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 a Global Assessment Measure Created by Standardized Patients for the Multiple Mini Interview in Medical School Admissions: Mixed Methods Study.","authors":"Ann Blair Kennedy, Cindy Nessim Youssef Riyad, Ryan Ellis, Perry R Fleming, Mallorie Gainey, Kara Templeton, Anna Nourse, Virginia Hardaway, April Brown, Pam Evans, Nabil Natafgi","doi":"10.2196/38209","DOIUrl":"10.2196/38209","url":null,"abstract":"<p><strong>Background: </strong>Standardized patients (SPs) are essential stakeholders in the multiple mini interviews (MMIs) that are increasingly used to assess medical school applicants' interpersonal skills. However, there is little evidence for their inclusion in the development of instruments.</p><p><strong>Objective: </strong>This study aimed to describe the process and evaluate the impact of having SPs co-design and cocreate a global measurement question that assesses medical school applicants' readiness for medical school and acceptance status.</p><p><strong>Methods: </strong>This study used an exploratory, sequential, and mixed methods study design. First, we evaluated the initial MMI program and determined the next quality improvement steps. Second, we held a collaborative workshop with SPs to codevelop the assessment question and response options. Third, we evaluated the created question and the additional MMI rubric items through statistical tests based on 1084 applicants' data from 3 cohorts of applicants starting in the 2018-2019 academic year. The internal reliability of the MMI was measured using a Cronbach α test, and its prediction of admission status was tested using a forward stepwise binary logistic regression.</p><p><strong>Results: </strong>Program evaluation indicated the need for an additional quantitative question to assess applicant readiness for medical school. In total, 3 simulation specialists, 2 researchers, and 21 SPs participated in a workshop leading to a final global assessment question and responses. The Cronbach α's were >0.8 overall and in each cohort year. The final stepwise logistic model for all cohorts combined was statistically significant (P<.001), explained 9.2% (R²) of the variance in acceptance status, and correctly classified 65.5% (637/972) of cases. The final model consisted of 3 variables: empathy, rank of readiness, and opening the encounter.</p><p><strong>Conclusions: </strong>The collaborative nature of this project between stakeholders, including nonacademics and researchers, was vital for the success of this project. The SP-created question had a significant impact on the final model predicting acceptance to medical school. This finding indicates that SPs bring a critical perspective that can improve the process of evaluating medical school applicants.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e38209"},"PeriodicalIF":0.0,"publicationDate":"2022-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9472042/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447291","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":"Moving to Personalized Medicine Requires Personalized Health Plans.","authors":"Adam Powell,&nbsp;Paul Dolan","doi":"10.2196/35798","DOIUrl":"https://doi.org/10.2196/35798","url":null,"abstract":"<p><p>When individuals, families, and employers select health plans in the United States, they are typically only shown the financial structure of the plans and their provider networks. This variation in financial structure can lead patients to have health plans aligned with their financial needs, but not with their underlying nonfinancial preferences. Compounding the challenge is the fact that managed care organizations have historically used a combination of population-level budget impact models, cost-effectiveness analyses, medical necessity criteria, and current medical consensus to make coverage decisions. This approach to creating and presenting health plan options does not consider heterogeneity in patient and family preferences and values, as it treats populations as uniform. Similarly, it does not consider that there are some situations in which patients are price-insensitive. We seek to highlight the challenges posed by presenting health plans to patients in strictly financial terms, and to call for more consideration of nonfinancial patient preferences in the health plan design and selection process.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e35798"},"PeriodicalIF":0.0,"publicationDate":"2022-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9389374/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40680814","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":"Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study.","authors":"Jane Chudleigh,&nbsp;Lynette Shakespeare,&nbsp;Pru Holder,&nbsp;Holly Chinnery,&nbsp;Gemma Hack,&nbsp;Tanya Gill,&nbsp;Rachel Gould,&nbsp;Kevin W Southern,&nbsp;Ellinor K Olander,&nbsp;Stephen Morris,&nbsp;James R Bonham,&nbsp;Alan Simpson,&nbsp;Louise Moody","doi":"10.2196/33485","DOIUrl":"https://doi.org/10.2196/33485","url":null,"abstract":"<p><strong>Background: </strong>Each year in England, almost 10,000 parents are informed of their child's positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress.</p><p><strong>Objective: </strong>This study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents.</p><p><strong>Methods: </strong>An experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62% mothers and 8/21, 38% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform.</p><p><strong>Results: </strong>Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals' communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents' views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results.</p><p><strong>Conclusions: </strong>Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interv","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e33485"},"PeriodicalIF":0.0,"publicationDate":"2022-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9377474/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40566696","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":"In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders","authors":"C. A. Smith, Michelle M. Kelly","doi":"10.2196/37759","DOIUrl":"https://doi.org/10.2196/37759","url":null,"abstract":"Background Patient portals are a health information technology that allows patients and their proxies, such as caregivers and family members, to access designated portions of their electronic health record using mobile devices and web browsers. The Open Notes initiative in the United States, which became federal law in April 2021, has redrawn and expanded the boundaries of medical records. Only a few studies have focused on sharing notes with parents or caregivers of pediatric patients. Objective This study aimed to investigate the anticipated impact of increasing the flow of electronic health record information, specifically physicians’ daily inpatient progress notes, via a patient portal to parents during their child’s acute hospital stay—an understudied population and an understudied setting. Methods A total of 5 in-person focus groups were conducted with 34 stakeholders most likely impacted by sharing of physicians’ inpatient notes with parents of hospitalized children: hospital administrators, hospitalist physicians, interns and resident physicians, nurses, and the parents themselves. Results Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and reinforcement, education, stress reduction, quality control, and improving family-provider relationships. Challenges identified included burden on provider, medical jargon, communication, sensitive content, and decreasing trust. Conclusions Providing patients and, in the case of pediatrics, caregivers with access to medical records via patient portals increases the flow of information and, in turn, their ability to participate in the discourse of their care. Parents in this study demonstrated not only that they act as monitors and guardians of their children’s health but also that they are observers of the clinical processes taking place in the hospital and at their child’s bedside. This includes the clinical documentation process, from the creation of notes to the reading and sharing of the notes. Parents acknowledge not only the importance of notes in the clinicians’ workflow but also their collaboration with providers as part of the health care team.","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43378192","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}

{"title":"Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing.","authors":"Alysha Taxter,&nbsp;Lisa Johnson,&nbsp;Doreen Tabussi,&nbsp;Yukiko Kimura,&nbsp;Brittany Donaldson,&nbsp;Erica Lawson,&nbsp;Vincent Del Gaizo,&nbsp;Daniela Vitelli,&nbsp;Corinne Pinter,&nbsp;Aricca Van Citters,&nbsp;Eugene Nelson,&nbsp;Tzielan Lee","doi":"10.2196/34735","DOIUrl":"https://doi.org/10.2196/34735","url":null,"abstract":"<p><strong>Background: </strong>The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions. Juvenile idiopathic arthritis (JIA), the most common chronic pediatric rheumatic condition, is associated with increased pain, decreased function, and decreased quality of life.</p><p><strong>Objective: </strong>The aim of this study is to design a dashboard prototype for use in coproducing care in patients with JIA. We evaluated the use and needs of end users, obtained a consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction.</p><p><strong>Methods: </strong>A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support the coproduction of care in 4 ambulatory pediatric rheumatology clinics. We engaged a multidisciplinary team (n=18) of patients, parents, clinicians, nurses, and staff during an in-person kick-off meeting followed by biweekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences.</p><p><strong>Results: </strong>Teams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care decisions. Notable themes included the right data in the right place at the right time, data in once for multiple purposes, patient and family self-management components, and the opportunity for education and increased transparency. A final set of 11 dashboard data elements was identified, including patient-reported outcomes, clinical data, and medications. Important design considerations featured the incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper-testing with 36 patients and families yielded positive feedback, with 89% (8/9) to 100% (9/9) of parents (n=9) and 80% (8/10) to 90% (9/10) of clinicians (n=10) strongly agreeing or agreeing that the dashboard was useful during clinic discussions, helped to talk about what mattered most, and informed health care decision-making.</p><p><strong>Conclusions: </","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e34735"},"PeriodicalIF":0.0,"publicationDate":"2022-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9077505/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39761509","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":"Implementing the Co-Immune Open Innovation Program to Address Vaccination Hesitancy and Access to Vaccines: Retrospective Study.","authors":"Camille Masselot, Bastian Greshake Tzovaras, Chris L B Graham, Gary Finnegan, Rathin Jeyaram, Isabelle Vitali, Thomas Landrain, Marc Santolini","doi":"10.2196/32125","DOIUrl":"10.2196/32125","url":null,"abstract":"<p><strong>Background: </strong>The rise of major complex public health problems, such as vaccination hesitancy and access to vaccination, requires innovative, open, and transdisciplinary approaches. Yet, institutional silos and lack of participation on the part of nonacademic citizens in the design of solutions hamper efforts to meet these challenges. Against this background, new solutions have been explored, with participatory research, citizen science, hackathons, and challenge-based approaches being applied in the context of public health.</p><p><strong>Objective: </strong>Our aim was to develop a program for creating citizen science and open innovation projects that address the contemporary challenges of vaccination in France and around the globe.</p><p><strong>Methods: </strong>We designed and implemented Co-Immune, a program created to tackle the question of vaccination hesitancy and access to vaccination through an online and offline challenge-based open innovation approach. The program was run on the open science platform Just One Giant Lab.</p><p><strong>Results: </strong>Over a 6-month period, the Co-Immune program gathered 234 participants of diverse backgrounds and 13 partners from the public and private sectors. The program comprised 10 events to facilitate the creation of 20 new projects, as well as the continuation of two existing projects, to address the issues of vaccination hesitancy and access, ranging from app development and data mining to analysis and game design. In an open framework, the projects made their data, code, and solutions publicly available.</p><p><strong>Conclusions: </strong>Co-Immune highlights how open innovation approaches and online platforms can help to gather and coordinate noninstitutional communities in a rapid, distributed, and global way toward solving public health issues. Such initiatives can lead to the production and transfer of knowledge, creating novel solutions in the public health sector. The example of Co-Immune contributes to paving the way for organizations and individuals to collaboratively tackle future global challenges.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e32125"},"PeriodicalIF":0.0,"publicationDate":"2022-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8817221/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39846850","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":"Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis.","authors":"Francine Buchanan,&nbsp;Claudia Lai,&nbsp;Eyal Cohen,&nbsp;Golda Milo-Manson,&nbsp;Aviv Shachak","doi":"10.2196/31699","DOIUrl":"https://doi.org/10.2196/31699","url":null,"abstract":"<p><strong>Background: </strong>Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs.</p><p><strong>Objective: </strong>The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity.</p><p><strong>Methods: </strong>We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context.</p><p><strong>Results: </strong>Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions.</p><p><strong>Conclusions: </strong>Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e31699"},"PeriodicalIF":0.0,"publicationDate":"2022-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8804956/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39828398","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":"A Norm-Creative Method for Co-constructing Personas With Children With Disabilities: Multiphase Design Study.","authors":"Britta Teleman, Petra Svedberg, Ingrid Larsson, Caroline Karlsson, Jens M Nygren","doi":"10.2196/29743","DOIUrl":"10.2196/29743","url":null,"abstract":"<p><strong>Background: </strong>An increase in the demand for child participation in health care requires tools that enable and empower children to be involved in the co-production of their own care. The development of such tools should involve children, but participatory design and research with children have challenges, in particular, when involving children with disabilities where a low level of participation is the norm. Norm-creative and participatory approaches may bring more effective design solutions for this group. \"Personas\" is a methodology for increasing user perspectives in design and offers representation when users are absent. However, research on participatory persona generation in this context is limited.</p><p><strong>Objective: </strong>The objective of this study was to investigate how norm-creative and participatory design approaches can be integrated in a persona generation method to suit children with disabilities in the design of games for health that target this group.</p><p><strong>Methods: </strong>The method development involved interview transcripts and image-based workshops. Sixteen children with various disabilities participated in persona generation through co-creation of characters and scenarios. The results from the workshops were validated together with 8 children without disabilities, 1 young adult with a disability, and 1 rehabilitation professional. A qualitative thematic design analysis was iterated throughout the process.</p><p><strong>Results: </strong>The results consisted of an image-based and iterative co-construction method. It was accompanied by examples of personas that were generated and validated within a games for health case. The method showed effectiveness in enabling flexible co-construction and communication. The data resonated with social model perspectives, and the development is discussed in terms of participation levels, salutogenic descriptions of barriers, and norm-creative tradeoffs.</p><p><strong>Conclusions: </strong>The resulting method may influence future design projects toward more inclusiveness and enable increased representation for children with disabilities in research and design. Using this method to its full potential requires a norm-critical awareness as well as extensive facilitation. Suggestions for further research include the application of the method to design processes in similar contexts or user groups.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e29743"},"PeriodicalIF":0.0,"publicationDate":"2022-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8778551/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39878949","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}