Journal of Participatory Medicine最新文献

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Examining Patient Engagement in Chatbot Development Approaches for Healthy Lifestyle and Mental Wellness Interventions: Scoping Review. 检查患者参与健康生活方式和心理健康干预的聊天机器人开发方法:范围审查。
Journal of Participatory Medicine Pub Date : 2023-05-22 DOI: 10.2196/45772
Chikku Sadasivan, Christofer Cruz, Naomi Dolgoy, Ashley Hyde, Sandra Campbell, Margaret McNeely, Eleni Stroulia, Puneeta Tandon
{"title":"Examining Patient Engagement in Chatbot Development Approaches for Healthy Lifestyle and Mental Wellness Interventions: Scoping Review.","authors":"Chikku Sadasivan, Christofer Cruz, Naomi Dolgoy, Ashley Hyde, Sandra Campbell, Margaret McNeely, Eleni Stroulia, Puneeta Tandon","doi":"10.2196/45772","DOIUrl":"10.2196/45772","url":null,"abstract":"<p><strong>Background: </strong>Chatbots are growing in popularity as they offer a range of potential benefits to end users and service providers.</p><p><strong>Objective: </strong>Our scoping review aimed to explore studies that used 2-way chatbots to support healthy eating, physical activity, and mental wellness interventions. Our objectives were to report the nontechnical (eg, unrelated to software development) approaches for chatbot development and to examine the level of patient engagement in these reported approaches.</p><p><strong>Methods: </strong>Our team conducted a scoping review following the framework proposed by Arksey and O'Malley. Nine electronic databases were searched in July 2022. Studies were selected based on our inclusion and exclusion criteria. Data were then extracted and patient involvement was assessed.</p><p><strong>Results: </strong>16 studies were included in this review. We report several approaches to chatbot development, assess patient involvement where possible, and reveal the limited detail available on reporting of patient involvement in the chatbot implementation process. The reported approaches for development included: collaboration with knowledge experts, co-design workshops, patient interviews, prototype testing, the Wizard of Oz (WoZ) procedure, and literature review. Reporting of patient involvement in development was limited; only 3 of the 16 included studies contained sufficient information to evaluate patient engagement using the Guidance for Reporting Involvement of Patients and Public (GRIPP2).</p><p><strong>Conclusions: </strong>The approaches reported in this review and the identified limitations can guide the inclusion of patient engagement and the improved documentation of engagement in the chatbot development process for future health care research. Given the importance of end user involvement in chatbot development, we hope that future research will more systematically report on chatbot development and more consistently and actively engage patients in the codevelopment process.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"15 ","pages":"e45772"},"PeriodicalIF":0.0,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10242458/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9591129","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}
引用次数: 0
Acceptability of Automated Robotic Clinical Breast Examination: Survey Study. 自动机器人临床乳房检查的可接受性:调查研究。
Journal of Participatory Medicine Pub Date : 2023-04-03 DOI: 10.2196/42704
George P Jenkinson, Natasha Houghton, Nejra van Zalk, Jo Waller, Fernando Bello, Antonia Tzemanaki
{"title":"Acceptability of Automated Robotic Clinical Breast Examination: Survey Study.","authors":"George P Jenkinson, Natasha Houghton, Nejra van Zalk, Jo Waller, Fernando Bello, Antonia Tzemanaki","doi":"10.2196/42704","DOIUrl":"10.2196/42704","url":null,"abstract":"<p><strong>Background: </strong>In the United Kingdom, women aged 50 to 70 years are invited to undergo mammography. However, 10% of invasive breast cancers occur in women aged ≤45 years, representing an unmet need for young women. Identifying a suitable screening modality for this population is challenging; mammography is insufficiently sensitive, whereas alternative diagnostic methods are invasive or costly. Robotic clinical breast examination (R-CBE)-using soft robotic technology and machine learning for fully automated clinical breast examination-is a theoretically promising screening modality with early prototypes under development. Understanding the perspectives of potential users and partnering with patients in the design process from the outset is essential for ensuring the patient-centered design and implementation of this technology.</p><p><strong>Objective: </strong>This study investigated the attitudes and perspectives of women regarding the use of soft robotics and intelligent systems in breast cancer screening. It aimed to determine whether such technology is theoretically acceptable to potential users and identify aspects of the technology and implementation system that are priorities for patients, allowing these to be integrated into technology design.</p><p><strong>Methods: </strong>This study used a mixed methods design. We conducted a 30-minute web-based survey with 155 women in the United Kingdom. The survey comprised an overview of the proposed concept followed by 5 open-ended questions and 17 closed questions. Respondents were recruited through a web-based survey linked to the Cancer Research United Kingdom patient involvement opportunities web page and distributed through research networks' mailing lists. Qualitative data generated via the open-ended questions were analyzed using thematic analysis. Quantitative data were analyzed using 2-sample Kolmogorov-Smirnov tests, 1-tailed t tests, and Pearson coefficients.</p><p><strong>Results: </strong>Most respondents (143/155, 92.3%) indicated that they would definitely or probably use R-CBE, with 82.6% (128/155) willing to be examined for up to 15 minutes. The most popular location for R-CBE was at a primary care setting, whereas the most accepted method for receiving the results was an on-screen display (with an option to print information) immediately after the examination. Thematic analysis of free-text responses identified the following 7 themes: women perceive that R-CBE has the potential to address limitations in current screening services; R-CBE may facilitate increased user choice and autonomy; ethical motivations for supporting R-CBE development; accuracy (and users' perceptions of accuracy) is essential; results management with clear communication is a priority for users; device usability is important; and integration with health services is key.</p><p><strong>Conclusions: </strong>There is a high potential for the acceptance of R-CBE in its target user group and a hig","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"15 ","pages":"e42704"},"PeriodicalIF":0.0,"publicationDate":"2023-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10131668/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9355491","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}
引用次数: 0
Winds of change: Tracking the development of CE over time. A realist qualitative study (Preprint) 变革之风:随时间跟踪CE的发展。现实主义定性研究(预印本)
Journal of Participatory Medicine Pub Date : 2023-03-22 DOI: 10.2196/47500
Esther de Weger, Hanneke Drewes, Katrien Luijkx, Caroline Baan
{"title":"Winds of change: Tracking the development of CE over time. A realist qualitative study (Preprint)","authors":"Esther de Weger, Hanneke Drewes, Katrien Luijkx, Caroline Baan","doi":"10.2196/47500","DOIUrl":"https://doi.org/10.2196/47500","url":null,"abstract":"","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"39 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136275377","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}
引用次数: 0
Enhancing Exposure Treatment for Youths With Chronic Pain: Co-design and Qualitative Approach. 加强对慢性疼痛青少年的暴露治疗:共同设计和定性方法。
Journal of Participatory Medicine Pub Date : 2023-03-09 DOI: 10.2196/41292
Lea Schemer, Courtney W Hess, Amanda R Van Orden, Kathryn A Birnie, Lauren E Harrison, Julia A Glombiewski, Laura E Simons
{"title":"Enhancing Exposure Treatment for Youths With Chronic Pain: Co-design and Qualitative Approach.","authors":"Lea Schemer, Courtney W Hess, Amanda R Van Orden, Kathryn A Birnie, Lauren E Harrison, Julia A Glombiewski, Laura E Simons","doi":"10.2196/41292","DOIUrl":"10.2196/41292","url":null,"abstract":"<p><strong>Background: </strong>Increasing the access to and improving the impact of pain treatments is of utmost importance, especially among youths with chronic pain. The engagement of patients as research partners (in contrast to research participants) provides valuable expertise to collaboratively improve treatment delivery.</p><p><strong>Objective: </strong>This study looked at a multidisciplinary exposure treatment for youths with chronic pain through the lens of patients and caregivers with the aim to explore and validate treatment change processes, prioritize and develop ideas for improvement, and identify particularly helpful treatment elements.</p><p><strong>Methods: </strong>Qualitative exit interviews were conducted with patients and caregivers at their discharge from 2 clinical trials (ClinicalTrials.gov NCT01974791 and NCT03699007). Six independent co-design meetings were held with patients and caregivers as research partners to establish a consensus within and between groups. The results were validated in a wrap-up meeting.</p><p><strong>Results: </strong>Patients and caregivers described that exposure treatment helped them better process pain-related emotions, feel empowered, and improve their relationship with each other. The research partners developed and agreed upon 12 ideas for improvement. Major recommendations include that pain exposure treatment should be disseminated more not only among patients and caregivers but also among primary care providers and the general public to facilitate an early referral for treatment. Exposure treatment should allow flexibility in terms of duration, frequency, and delivery mode. The research partners prioritized 13 helpful treatment elements. Most of the research partners agreed that future exposure treatments should continue to empower patients to choose meaningful exposure activities, break long-term goals into smaller steps, and discuss realistic expectations at discharge.</p><p><strong>Conclusions: </strong>The results of this study have the potential to contribute to the refinement of pain treatments more broadly. At their core, they suggest that pain treatments should be disseminated more, flexible, and transparent.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"15 ","pages":"e41292"},"PeriodicalIF":0.0,"publicationDate":"2023-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10037174/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9186528","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}
引用次数: 0
Co-design of the Transgender Health Information Resource: Web-Based Participatory Design. 共同设计变性人健康信息资源:基于网络的参与式设计。
Journal of Participatory Medicine Pub Date : 2023-01-10 DOI: 10.2196/38078
Brad Morse, Andrey Soares, Kate Ytell, Kristen DeSanto, Marvyn Allen, Brooke Dorsey Holliman, Rita S Lee, Bethany M Kwan, Lisa M Schilling
{"title":"Co-design of the Transgender Health Information Resource: Web-Based Participatory Design.","authors":"Brad Morse, Andrey Soares, Kate Ytell, Kristen DeSanto, Marvyn Allen, Brooke Dorsey Holliman, Rita S Lee, Bethany M Kwan, Lisa M Schilling","doi":"10.2196/38078","DOIUrl":"10.2196/38078","url":null,"abstract":"<p><strong>Background: </strong>There is an urgent and unmet need for accessible and credible health information within the transgender and gender-diverse (TGD) community. Currently, TGD individuals often seek and must find relevant resources by vetting social media posts. A resource that provides accessible and credible health-related resources and content via a mobile phone app may have a positive impact on and support the TGD population.</p><p><strong>Objective: </strong>COVID-19 stay-at-home orders forced a shift in the methods used in participatory design. In this paper, we aimed to describe the web-based participatory methods used to develop the Transgender Health Information Resource. We also described and characterized the web-based engagement that occurred during a single session of the overall design process.</p><p><strong>Methods: </strong>We planned and conducted web-based design sessions to replace the proposed in-person sessions. We used web-based collaborative tools, including Zoom (Zoom Video Communications), Mural (Mural), REDCap (Research Electronic Data Capture; Vanderbilt University), and Justinmind (Justinmind), to engage the participants in the design process. Zoom was used as an integrated platform for design activities. Mural was used to perform exercises, such as free listing, brainstorming, and grouping. REDCap allowed us to collect survey responses. Justinmind was used to create prototypes that were shared and discussed via Zoom. Recruitment was led by one of our community partners, One Colorado, who used private Facebook groups in which web-based flyers were dispersed. The design process took place in several workshops over a period of 10 months. We described and characterized engagement during a single design session by tracking the number of influential interactions among participants. We defined an influential interaction as communication, either verbal or web-based content manipulation, that advanced the design process.</p><p><strong>Results: </strong>We presented data from a single design session that lasted 1 hour and 48 minutes and included 4 participants. During the session, there were 301 influential interactions, consisting of 79 verbal comments and 222 web-based content manipulations.</p><p><strong>Conclusions: </strong>Web-based participatory design can elicit input and decisions from participants to develop a health information resource, such as a mobile app user interface. Overall, participants were highly engaged. This approach maintained the benefits and fidelity of traditional in-person design sessions, mitigated deficits, and exploited the previously unconsidered benefits of web-based methods, such as enhancing the ability to participate for those who live far from academic institutions. The web-based approach to participatory design was an efficient and feasible methodological design approach.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"15 ","pages":"e38078"},"PeriodicalIF":0.0,"publicationDate":"2023-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9874991/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10329069","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}
引用次数: 0
Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers. 面对自我管理的负担:调查病患与非正式照护者授权行为的质性研究。
Journal of Participatory Medicine Pub Date : 2022-11-16 DOI: 10.2196/39174
Therese Scott Duncan, Jon Engström, Sara Riggare, Maria Hägglund, Sabine Koch
{"title":"Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers.","authors":"Therese Scott Duncan,&nbsp;Jon Engström,&nbsp;Sara Riggare,&nbsp;Maria Hägglund,&nbsp;Sabine Koch","doi":"10.2196/39174","DOIUrl":"https://doi.org/10.2196/39174","url":null,"abstract":"<p><strong>Background: </strong>Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce.</p><p><strong>Objective: </strong>We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better.</p><p><strong>Methods: </strong>We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews.</p><p><strong>Results: </strong>A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals.</p><p><strong>Conclusions: </strong>To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e39174"},"PeriodicalIF":0.0,"publicationDate":"2022-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9713617/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40490551","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}
引用次数: 2
From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care. 从个人到系统和对创造的贡献:通过召集健康和卫生保健中心来绘制个人努力的新框架。
Journal of Participatory Medicine Pub Date : 2022-11-03 DOI: 10.2196/39339
Dana Lewis, Liz Salmi, Alicia Staley, John Harlow
{"title":"From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care.","authors":"Dana Lewis,&nbsp;Liz Salmi,&nbsp;Alicia Staley,&nbsp;John Harlow","doi":"10.2196/39339","DOIUrl":"https://doi.org/10.2196/39339","url":null,"abstract":"<p><strong>Background: </strong>People with lived health care experiences (often referred to as \"patients\") are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care.</p><p><strong>Objective: </strong>Convening The Center aimed to bring together \"people known as patients\"-the center of health care-to address priorities as they defined them.</p><p><strong>Methods: </strong>According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation.</p><p><strong>Results: </strong>The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients' involvement, ranging from individual to community to systemic involvement.</p><p><strong>Conclusions: </strong>The descriptors of patients in academic literature typically focus on what health care providers think patients \"are\" rather than on what patients \"do.\" The primary result of this project is a framework for mapping what patients \"do\" and \"where\" they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e39339"},"PeriodicalIF":0.0,"publicationDate":"2022-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9672994/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40442214","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}
引用次数: 1
Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation. 在卫生保健系统中支持护理人员的短信:发展、试点和全国推广评估。
Journal of Participatory Medicine Pub Date : 2022-10-17 DOI: 10.2196/35318
Jennifer Lynn Martindale-Adams, Carolyn Davis Clark, Jessica Roxy Martin, Charles Richard Henderson, Linda Olivia Nichols
{"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}
引用次数: 1
A Health Equity-Oriented Research Agenda Requires Comprehensive Community Engagement. 以卫生公平为导向的研究议程需要全面的社区参与。
Journal of Participatory Medicine Pub Date : 2022-09-30 DOI: 10.2196/37657
Kevin Rice, Joshua Seidman, Oneil Mahoney
{"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}
引用次数: 0
Evaluating a Global Assessment Measure Created by Standardized Patients for the Multiple Mini Interview in Medical School Admissions: Mixed Methods Study. 评估由标准化患者为医学院入学考试中的多重小型面试创建的全球评估量表:混合方法研究。
Journal of Participatory Medicine Pub Date : 2022-08-30 DOI: 10.2196/38209
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
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