搜索结果：Journal of participatory medicine

While adults are actively involved in medical decisions, this has long been neglected in the case of children and adolescents. Traditionally, parents and doctors make decisions for children, as children are often considered lacking cognitive maturity and the ability to make decisions. The involvement of children and adolescents can have many advantages. However, the needs of children and adolescents are not always sufficiently taken into account in the healthcare system. The aim of this study is to explore the opinions of children and adolescents as well as their parents with respect to the extent of participation across the three dimensions prevention, health care, and health research. The data was collected using the dot poster method. The survey was conducted at a public event both on site and online to ensure broad participation. The data was analyzed descriptively. A total of 87 people took part in the survey. Thereof, 30 were under 18 years old (34.5%). Overall, the participation of children and adolescents in areas of the healthcare system was supported. The extent of participation varied depending on the age of the population under consideration and the age of the respondents. Younger respondents tended to be in favor of leaving health decisions to their parents and wanted a lesser form of participation. Respondents over the age of 18 favored a higher degree of participation by children and adolescents, particularly in research. The results of this study emphasize the need to systematically examine and promote the participation of children and adolescents in the healthcare system. The differentiated consideration of the age groups enables a targeted approach and consideration of the different decision-making abilities. The results should serve as a basis for future research projects dealing with the development and implementation of participatory approaches in pediatric care and research.

Sustainment of evidence-based programs within dynamic health care environments requires ongoing adaptation to internal and external changes. Yet, strategies to support the sustainment of large-scale programs in heterogeneous settings are understudied. We developed and implemented a 3-phase participatory approach to support the sustainment of GRECC Connect, a 19-site Veterans Health Administration program that uses a hub-and-spoke model to expand rural access to geriatric specialty care. Our goal is to describe a novel participatory approach for identifying sustainment strategies for large-scale health care programs in complex environments, using our experience with GRECC Connect as an example to illustrate the application of this approach. We implemented the following 3-phase participatory approach with GRECC Connect team members from 19 hub sites. Phase 1: hub site clinicians and staff completed the Program Sustainment Assessment Tool, a publicly available online self-assessment of sustainability capacity. Phase 2: all sites then participated in a virtual retreat to exchange information, knowledge, and experiences related to sustainment strategies. Phase 3: each site submitted a locally-developed sustainment plan created with input from hub site team members. The sustainment plan worksheet included 3 questions asking respondents to reflect on the value of the participatory approach to sustainment. The process and experience of implementing this approach were also documented in structured meeting notes. Responses to Likert scale questions were analyzed with descriptive statistics, and qualitative data were analyzed using conventional content analysis. Overall, there was a high level of participation across all 19 hub sites. In phase 1, a total of 25 individuals from 14 sites responded to the Program Sustainment Assessment Tool survey; in phase 2, a total of 58 individuals from 19 sites attended the retreat; and in phase 3, a total of 17 site sustainment plans were completed. Three primary sustainment paths were proposed and discussed during the retreat. Sites varied in their confidence to sustain program activities, but were able to articulate several barriers and facilitators specific to their site. The level of specificity in the sustainment plans varied considerably across sites. Most sites reported that this participatory approach was "very useful" (ie, ≥7 on a 10-point Likert scale) for planning their program sustainment. This approach offered a framework for sites to learn from one another, anticipate local barriers and facilitators, and move from reflection to identifying next steps for maintaining core program activities. Here, we describe the process used to guide 19 site teams through sustainment activities. We found the process is well-received, with sites reporting that their participation was useful for planning their sustainment journey. In elucidating our process, we provide a blueprint for other programs seeking to support sustainment across heterogeneous health care networks.

BACKGROUND: Uncertainty is an inherent and challenging aspect of medical practice, particularly for first-year residents making the transition from theoretical education to clinical practice. We aimed to identify factors influencing uncertainty experienced by residents practicing within different organizational frameworks, which could serve as potential targets for supportive interventions. METHODS: A qualitative study was conducted using semi-structured interviews with 20 first-year residents across five organizationally and geographically diverse hospitals in Norway. The reflective interviews were informed by participatory observation during emergency department shifts that provided verbal and behavioral cues signaling uncertainty. Data was transcribed and analyzed using Systematic Text Condensation. RESULTS: We found four themes with factors influencing residents’ experiences of uncertainty: 1) Residents’ Competence: level of experience and knowledge affected level of uncertainty and confidence, 2) Clinical Complexity: level of patient complexity affected level of uncertainty and the need for consultative support. 3) Consultative Support: availability and predictability of consultative support from senior physician affected level of uncertainty. 4) Level of responsibility: greater responsibility of residents in rural hospitals, due to limited support, fostered faster learning but with the downside of greater initial uncertainty and suboptimal learning environment. We also found that additional factors outside of physicians control such as the number of concurrent patients, the urgency and severity of clinical cases, and related time pressure, further influenced the residents' experience of uncertainty. CONCLUSION: First-year residents’ experience of uncertainty is influenced by a combination of personal and organizational factors. Rural hospital settings, which offer limited consultative support and greater responsibility, may foster more uncertainty initially but also promote a quicker transition towards autonomous uncertainty management and development of uncertainty tolerance. Urban settings offer more immediate uncertainty management support, but often under higher patient loads and time constraints, limiting residents’ experience with critically ill patients and responsibility in general. These findings can help hospitals, universities and management modify factors affecting residents’ experiences of uncertainty. This can also help in training medical students and residents so they can better understand, tolerate and manage uncertainty. TRIAL REGISTRATION: This is an observational study which does not include any intervention; therefore, it has not been registered.

BACKGROUND: There is limited research on cancer screening, prevention and treatment in the remote areas of Northeastern Uganda. Specifically, there is limited research presenting cancer control stakeholder perspectives in remote settings, whereas stakeholders’ perspectives are critical for an engaged participatory approach to cancer control. This study therefore aimed to establish the community (patients, caretakers, opinion leaders, health managers and policy makers) perspectives on cancer surveillance, prevention, treatment and identify priorities for cancer research in Northeastern Uganda. METHODS: This qualitative research was part of a stakeholder’s consultation on cancer research priorities in Northeastern Uganda for Wellcome Trust research grant application, conducted by a consortium of research partners. Six semi-structured Key Informant Interviews (KIIs), two focus group discussions (FGDs) and one community dialogue meeting were conducted between July and August 2025. Thematic data analysis was conducted to identify emergent themes from the interviews. Findings are presented using the key emergent themes, supporting quotes, and are presented in tables and text. This study is reported in accordance with Consolidated Criteria for Reporting Qualitative Research (COREQ). KEY FINDINGS: There was delayed diagnosis in most cases for cancer patients. After the cancer diagnosis, patients were referred to Mulago Hospital, approximately 300Km away from their homes for further treatment, with many hesitations and incapacity to go to Mulago due to many social and economic challenges. There is no stand-alone cancer surveillance system in the country and currently it depends on health facility data which have lots of weaknesses including incompleteness and inaccuracy. Health facilities are ill-prepared to respond to the growing burden of cancers. Priorities for cancer research include epidemiology and etiology of cancer and a focus on population-based registry for unique populations in Uganda and strengthening cancer surveillance systems. CONCLUSION: This study highlights the importance of an engaged approach based on Participatory Action Research theory to identify problems. Through this approach, the research team was able to accurately understand the research context, identify research issues, and priorities. Priorities for cancer research identified by this study include epidemiology and etiology of cancer, including the incidence studies and geographical mapping of these cancers, conducting cancer disease surveillance at the landing site and investigating the contribution of the locally available foods and environment to cancers. There is need for community sensitization and screening for cancers in the entire region. Involvement of community team leaders such as village health teams (VHTs), local council I (LCIs), traditional and church leaders in cancer surveillance should be encouraged and the community case definitions of common cancers should be refined and the capacity of the community workers (VHTs) built to detect cancers at community level. Through this preliminary research, the groundwork for science anchored on the realities of the affected people has been firmly laid upon which science can build on to solve the problem in a sustainable and equitable way.

The integration of patient input into drug research & development (R&D) enables the production of medicines that better meet the needs of patients. While momentum for advancing the science of patient input has continued to grow, there remain a host of barriers to full implementation and integration of systematic approaches for collecting and using robust and meaningful patient input data to inform decision-making. To help address these barriers, the Advancing the Science of Patient Input Action Collaborative (the collaborative), an activity associated with the National Academies of Sciences, Engineering, and Medicine (National Academies) Forum on Drug Discovery, Development, and Translation, organized a multi-stakeholder endeavor to identify and address key barriers to implementation through a series of information-gathering efforts. The collaborative engaged a wide range of perspectives to seek out practical paths forward to better align drug discovery, development, and regulation with patient priorities for disease management and treatment. Collaborative participants focused on three overarching research priorities which, if effectively addressed, would help advance the science of patient input: 1) understanding the patient experience over the course of a given disease or medical condition, 2) capturing the patient perspectives and priorities on benefit-risk, and 3) incorporating patient input into clinical trial design and continuous improvement. Addressing these research priorities would help decision makers shift away from using patient input in particular cases or for one-off applications and towards the integration of patient input as part of everyday medical research and practice. Building upon existing guidances and strategies, and sharing lessons learned from use cases, a comprehensive patient input framework would serve as a critical step towards reimagining and enriching the science of patient input throughout the drug R&D process, enabling a future in which medicines more fully meet the needs of patients.

Co-design methods, which create innovation tailored to the end-user needs and setting, are increasingly used to improve research uptake and impact. Peer review and methodologists have emphasised the need for early, meaningful, and continuous involvement of stakeholders, and the transparent and detailed reporting of co-design methods. The implementation of both complex interventions (such as an integrated care pathway), and technology, into healthcare is difficult and has high failure rates. Designing, implementing, and adapting interventions to ensure they work in the local context requires in-depth understanding of multiple end-users' needs, processes, and contexts. Achieving this requires early, meaningful, and continuous engagement between multiple end-users. This study aimed to contribute to co-design research by reporting the: 1) process used to develop and test Participatory Rapid Appraisal and Focus Groups methods to co-design integrated care. 2) details of how the method was applied in the GERONTE project. 3) core steps involved in this co-design method (to facilitate use and/ or adaptation of the method). The study aimed to develop, test, and evaluate a co-design method that: I. enabled early, continuous, and meaningful engagement of multiple end-users in different locations and across different design iterations. II. enabled timely feedback and checking between the end-users and design team. III. optimised end-users participation by being flexible in the time, duration, and method of data collection and feedback. The Participatory Rapid Appraisal and Focus Group to co-design integrated care method was developed in four stages. The first stage involved defining the project's co-design needs and reviewing the co-design literature to identify how to meet these. GERONTE aimed to co-design, evaluate, and prepare for EU-wide deployment, an integrated technology-supported care pathway for older adults with cancer and other morbidities. Focus Groups and Participatory Rapid Appraisal, in combination, were chosen as an empirically-based and practical approach. Focus Groups (FG) provided a participatory-based way to collect data in order to identify and agree multiple stakeholders' needs and collective priorities. Participatory Rapid Appraisal (PRA) provided a timely way; to gain participant feedback on the data collected; and, to ensure accuracy in the data sent to the pathway and technology design teams. The second stage involved applying the method in the GERONTE Project (using meetings between the project team, technologists, and older adults to develop a co-design protocol for the project). The third stage involved the use, refinement, evaluation, and reporting of the co-design method. The fourth stage, evaluation of the method, is ongoing. This study resulted in the development of a structured approach to using Participatory Rapid Appraisal and Focus Groups in combination to co-design technology-supported integrated care. This method is proposed as an evidenced-based, practical, user-friendly way to co-design (or adapt an existing design) an integrated technology-supported care pathway. This co-design method involves three cycles of design. Each cycle involves multidisciplinary FG to collect semi-structured data followed by rapid analysis and feedback of the FG data to the participants to design or refine the intervention.

This study aimed to develop pilot clinical skills assessment (CSA) modules for Korean medicine-specific procedures and to examine their preliminary appropriateness, perceived necessity, and feasibility as a foundation for future licensing-related assessment development. A participatory action research framework, supplemented by qualitative interviews, was used to develop 4 CSA modules-acupuncture, Chuna manual therapy, pulse diagnosis, and constitutional diagnosis-in collaboration with expert evaluators, students, and standardized patients. The modules were implemented as formative examinations for third-year Korean medicine students, after which semi-structured interviews were conducted to obtain feedback on module content, implementation processes, and scoring procedures. Each module was also reviewed using the RUMBA checklist (Realistic, Understandable, Measurable, Behavioral, and Achievable), together with ratings of perceived necessity and feasibility for possible future use in licensing-related assessment. Interview data were analyzed inductively at the level of individual responses and then compared across modules and participant groups. Qualitative analysis yielded 3 themes: content and scoring criteria, physical environment or simulators, and education or training. Participants emphasized the need to make key aspects of performance more observable, improve authenticity through simulators or task trainers, and strengthen the capacity of scoring systems to distinguish between levels of student performance. Across all modules, mean RUMBA scores were high in the understandable, behavioral, and achievable domains, whereas measurability was more problematic, especially for pulse diagnosis. These pilot findings clarify both the strengths and the limitations of Korean medicine-specific CSA modules. The modules received favorable ratings for understandability and achievability, whereas lower ratings for measurability and realism identified priorities for refinement before wider use. This study provides preliminary guidance for the continued development and broader evaluation of Korean medicine-specific performance assessments.

Cervical cancer is in the top five list of highly prevalent cancers. It contributes to millions of premature deaths globally. Low- and middle-income countries like those in sub-Saharan Africa are among the worst affected despite the preventable nature of the disease. The disease is caused by the human papillomavirus, a sexually transmitted infection for which an effective vaccine exists. This study aims to determine the effectiveness of a health promoter-led intervention on early screening, prevention and quality-of-life improvement among patients with cervical cancer. The study will be conducted in South Africa's Eastern Cape province. The study will employ an exploratory sequential mixed-methods design, comprising four qualitative and quantitative substudies. For qualitative substudies, purposive sampling will select 20 cervical patients, and two to four focus group discussions will be conducted with health workers in the oncology units of two referral hospitals. Patients with a cervical cancer diagnosis will consent to participate in a survey on their quality of life and their mental health status, specifically screening for depression and anxiety. An equal number of patients (64) will be allocated to the two quantitative study arms. For substudies 1 and 2, in-depth interviews and focus group discussions will be conducted using a semistructured interview guide. The data will be audio recorded, transcribed verbatim and entered into NVivo V.15 for data analysis. For substudies 3 and 4, data will be collected using validated tools such as the WHO-Quality of Life tool to assess the quality of life of cervical cancer survivors, the Generalized Anxiety Disorder version 7 scale and the Patient Health Questionnaire version 9 for anxiety and depression. Data will be captured in Microsoft Excel and exported to SPSS V.29 software (Statistical Package for the Social Sciences). The study will use descriptive analyses of intervention participants' responses using means, SDs, medians and IQRs, depending on the normality of the distribution. The ethical clearance (protocol reference number: WSU HREC 023/2025) was approved by the Walter Sisulu University, Faculty of Medicine and Health Sciences, Ethics and Biosafety Committee, and access approval (reference number: EC_202503_022) was granted by the Eastern Cape Provincial Health Research Committee. PACTR202507608317068.

Bipolar disorder (BD) affects approximately 40 million people worldwide and is a chronic, potentially disabling mood disorder. Although effective treatments exist, access to evidence-informed psychosocial care remains limited, particularly for culturally and linguistically diverse populations, contributing to persistent global treatment gaps. Digital mental health interventions (DMHIs), such as smartphone apps, offer a promising means to improve access to self-management support and quality of life (QoL), an outcome prioritized by people with BD and in clinical guidelines. However, most apps for BD lack quality and are not culturally adapted or co-designed with people with BD, limiting relevance and engagement. PolarUs (mobile app) is an evidence-informed DMHI developed using co-design with people with BD. The app is structured on the core 14 domains from the Quality of Life in BD scale, the only BD-tailored scale, combined with psychoeducation on self-management strategies and QoL. A recent pilot study demonstrated promising QoL, clinical, and feasibility outcomes. This study aims to culturally and linguistically adapt the PolarUs app into French, Chinese, and Spanish for the North American context using qualitative and co-design methods. Guided by community-based participatory research principles, whereby end users are engaged throughout the research process, and the Ecological Validity Framework of Bernal et al, we will engage advisory groups of people with lived experience from each linguistic community throughout the cultural adaptation process. Semimonthly virtual meetings will support systematic cultural adaptation of the self-management strategies, affirmations, and resources while maintaining fidelity to core evidence-based components. This will include cultural tailoring of app content and the identification of culturally appropriate resources. Advisory groups will also contribute to the cointerpretation of findings and the co-design of culturally appropriate recruitment and implementation strategies of PolarUs for a future clinical trial. Meetings will be recorded and coanalyzed as research data with advisory groups using qualitative reflexive thematic analysis to capture advisory group perspectives and experiences. This study was funded in October 2024. As of January 31, 2026, we enrolled 7 participants, and the results are expected to be published in the fall of 2026. The findings will support the development of a culturally appropriate DMHI for BD for additional linguistic communities, advance cultural adaptation methodologies, and inform preparation for a future clinical trial. This study will produce the first culturally adapted, BD-specific DMHI developed through co-design using a community-based participatory research approach with multilingual end users from traditionally underserved communities, advancing equitable access, engagement, and scalability of DMHIs for BD and digital health care more broadly.

Parents of children with chronic diseases in rural Iran experience profound challenges, including limited access to pediatric specialists, social isolation, and severe financial strain. Concurrently, healthcare providers face workforce shortages, administrative burdens, and fragmented referral systems. This study aimed to explore unmet care needs and comparative perspectives of parents and providers regarding the integration of artificial intelligence to strengthen chronic disease management in resource-limited rural settings. Using a qualitative descriptive design, we conducted semi-structured interviews with 20 parents of children with chronic illnesses and 15 healthcare providers (physicians, nurses, and community health workers) from rural health centres in Iran. Participants were selected through purposive sampling based on direct experience with pediatric chronic disease management in villages (<&#x2009;20,000 population). Data were analysed using conventional content analysis with iterative coding to derive emergent themes. Five key themes emerged: (1) Unmet daily care needs including geographic barriers to specialists, maternal emotional isolation, and catastrophic out-of-pocket expenses; (2) Systemic constraints faced by providers, notably administrative overload ("pajama time"), critical workforce shortages, and inefficient referral pathways; (3) AI as a potential bridge through symptom prediction models for early intervention, chatbots for emergency guidance, and AI-enabled teleconsultations to reduce unnecessary travel; (4) Divergent trust narratives parents expressed skepticism about autonomous AI decision-making while providers raised concerns about data privacy, workload implications, and erosion of clinical authority; and (5) Integration pathways emphasising AI embedded within the existing Behvarz (community health worker) network, mandatory digital literacy training, and co-designed platforms incorporating local cultural beliefs. AI technologies show promise for augmenting, though not replacing, human-centred care in rural pediatric chronic disease management. Successful implementation requires culturally resonant, transparent tools developed through participatory design with families and providers, robust data governance, and strategic alignment with Iran's primary healthcare infrastructure. This context-sensitive framework prioritises equity, trust-building, and caregiver empowerment while acknowledging the irreplaceable role of human empathy in chronic care delivery. Parents of children with chronic illnesses and healthcare providers were central to this research as knowledge partners rather than passive subjects. Twenty parents with lived experience of caring for a child with chronic disease in rural settings, alongside 15 frontline healthcare providers, actively shaped the study through in-depth sharing of their experiences during semi-structured interviews. Their narratives directly informed all emergent themes and the resulting conceptual framework. To ensure interpretive validity, we conducted member checking with a purposive subset of participants (n&#x2009;=&#x2009;8 parents and n&#x2009;=&#x2009;6 providers) who reviewed preliminary findings and provided feedback on whether the themes accurately reflected their realities and concerns. This iterative validation process strengthened the trustworthiness of our analysis and ensured that the final framework resonated with the everyday challenges and aspirations of rural families and providers. While participants were not involved in the initial study design or manuscript drafting due to the exploratory nature of this qualitative investigation, their experiential expertise fundamentally shaped the research outcomes and recommendations for culturally grounded AI integration. Their contributions transformed abstract technological possibilities into contextually meaningful pathways for supporting rural pediatric chronic disease management.

People living in rural areas of British Columbia experience inequities in access to health care that impact health and well-being. Since time immemorial, Indigenous peoples have had a holistic understanding of health and wellness, and knowledge of healthful ways of living. However, in a rural context, Indigenous peoples contend not only with inequitable access to health care, but also with the historical and ongoing impacts of colonization. Virtual health innovations enable access to care closer to home, yet the need for diagnostic tests and essential medicines remains limited by supply chains. In this context, transport of medical supplies by drone offers a promising solution and has the potential to improve access to health care in rural and First Nations communities in British Columbia. The Drone Transport Initiative is a co-created health care innovation project between the Stellat'en First Nation, the Village of Fraser Lake, the University of British Columbia, and other health system partners that investigated the feasibility of drones to transport medical supplies in a rural British Columbian context. This analysis aimed to understand the experiences and perceptions of the Project Team, people directly involved in the Initiative. Twenty members of the Project Team, including representatives from the Steering Committee and Operational Team having diverse roles within the project, participated in semistructured interviews. Eleven interviews were conducted either individually (n=5), in pairs (n=5), or in a group of 5 (n=1). Interviews were audio-recorded, transcribed verbatim, and anonymized. A reflexive thematic analysis was conducted to understand the Project Team's experiences and perceptions of the project. Initial results were shared with coauthors, including project cosponsors and community members, to interpret the findings and formulate discussion topics. Participants generally expressed positive experiences from being part of the Drone Transport Initiative, despite remarking on various challenges. Major themes derived from the analysis centered upon (1) building respectful and trusting relationships, (2) mutual benefits that enabled effective and engaged partnerships, (3) meaningful community engagement that facilitated community acceptance and ownership of the project, and (4) this project is "the first step of something big." Themes were further divided into subthemes characterized as processes or outcomes. In this work, we highlight a health innovation project grounded in relational approaches and partnerships, where rural and First Nations communities are champions of advancing their development goals and co-creating solutions that address key social determinants of health. We contribute to the literature by emphasizing the relational foundation that is necessary at the cutting edge of innovation to co-create, implement, and sustain drone projects with rural and First Nations communities.

To evaluate the effectiveness of a theory-informed, iterative implementation strategy (IS) to improve point-of-care ultrasound (POCUS) documentation compliance among emergency medicine (EM) residents according to American College of Emergency Physicians (ACEP) guidelines in a high-volume emergency department (ED). We conducted a 19-month (December 2023-June 2025) mixed-methods implementation study at a tertiary academic ED in India. The Consolidated Framework for Implementation Research (CFIR) and Expert Recommendations for Implementing Change guided six iterative IS phases, including education, co-design, workflow optimisation and audit/feedback. Participants were EM residents. The primary outcome was the proportion of POCUS examinations achieving &#x2265;80% compliance with ACEP documentation standards. Compliance trends were analysed across phases and summarised using proportions and medians with IQRs. Qualitative data from five focus group discussions were analysed using CFIR to identify barriers, facilitators and mechanisms of change. Quantitative and qualitative findings were integrated using a joint display. We assessed 3074 POCUS examinations. The proportion of scans achieving &#x2265;80% compliance increased from 0% at baseline to 35.1% postimplementation. Median compliance rose from 24% (IQR 17-34)&#x2009;to 69% (IQR 54-84). Compliance followed a nonlinear trajectory. Initial phases showed minimal gains (0%-8.7%)&#x2009;due to workflow barriers. A marked acceleration occurred during IS-5 (22.5%) following the introduction of a user-designed, single multimodal form and gamification. Qualitative analysis demonstrated a shift from initial resistance (CFIR: compatibility, complexity) to normalisation (implementation climate), although technical challenges with image archiving persisted. User-centred co-design and peer engagement were key to the improvement, although persistent infrastructure challenges limited further gains and highlighted the need for informatics-enabled solutions. This study demonstrates that low-cost, context-sensitive strategies can enhance POCUS documentation effectively in high-volume, resource-constrained EDs. A multifaceted, iterative IS guided by theoretical frameworks significantly improved POCUS documentation compliance. User-centred design and participatory engagement were critical mechanisms for sustainable practice change in a resource-variable EM setting. CTRI/2024/03/063671.

The consequences of climate change have detrimental effects on human health. The establishment of functional governance structures is considered crucial for addressing health challenges, as such structures provide the foundation for coordinated and coherent action. At present, no standardised and internationally applicable approach exists for assessing and benchmarking governance structures for climate and health at national level. Therefore, the objective of this study was to develop the PHONIC framework, a tool designed to assess governance structures for climate-resilient and sustainable health systems. We followed a four-step approach: First, we selected a methodology, originally designed for assessing food environment policies, and assessed its applicability to governance structures for health and climate change. This methodology comprises five key stages, as well as a set of indicators and a catalogue of good practice examples. Second, we identified and adapted existing indicators, through online consultations with international experts, and collated good practice examples for the assessment of governance structures for climate-resilient and sustainable health systems. Third, we piloted the framework with national expert groups in two countries, Germany and Kenya. Finally, we evaluated the PHONIC framework's application and revised the methodology based on the findings from the pilot phase. The final PHONIC framework includes a set of ten indicators across three thematic areas: three indicators focused on governance, four on policy development, and three on cross-sectoral collaboration. In addition, we compiled a catalogue of good practice examples for climate-resilient and sustainable health systems, currently comprising 47 examples from 32 countries. The piloting revealed opportunities, such as the participatory process, but also challenges regarding the narrow focus on health systems. The PHONIC framework, with its participatory and adaptable approach, enables the benchmarking and comprehensive analysis of the strengths and weaknesses of governance structures for climate-resilient and sustainable health systems at country level. The potential of the framework could be expanded by including international experts from a broader geographic scope and systematic searches for good practice examples. Decision makers in the health sector can use the outcomes of the PHONIC framework to identify the most relevant areas and actions for improvement of their climate change and health governance.

Group antenatal care (G-ANC), integrating medical care with education, has demonstrated positive effects on maternal and newborn health. Individual studies have shown promising evidence in sub-Saharan Africa, but systematically synthesising the existing research would facilitate implementation and identify gaps for further research. This systematic review aimed, therefore, to review the existing evidence on feasibility, acceptability and effectiveness of G-ANC in resource-limited settings to guide policy and support implementing G-ANC to reduce maternal and perinatal mortality. A systematic and comprehensive literature search was conducted in the PubMed/MEDLINE, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Excerpta Medica Database (Embase) and Google Scholar electronic databases. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews and meta-analyses of healthcare interventions were followed. Data were extracted using a prespecified protocol and quality was assessed using the Joanna Briggs Institute appraisal tool. Random-effects meta-analyses were used to pool estimates. The review is registered on the International Prospective Register of Systematic Reviews (PROSPERO: CRD42024565501). Of the 576 articles identified, 34 articles with 42&#x2009;234 participants were included. G-ANC increased the likelihood of attending four or more ANC visits (pooled risk ratio (RR)=1.45; 95%&#x2009;CI 1.22 to 2.82), was associated with the likelihood of attending postnatal care visits (RR=1.23; 95%&#x2009;CI 1.03 to 1.47), increased uptake of postpartum family planning methods (RR=1.85; 95%&#x2009;CI 1.26 to 2.73) and was associated with improved birth weight (RR=1.53; 95%&#x2009;CI 1.09 to 2.14). It was also associated with improved quality of care, health literacy, psychosocial gains, empowerment and facilitating culturally sensitive discussions. There was, however, no significant difference found between groups regarding likelihood of giving birth at health facilities compared with the traditional ANC. Also, no cost-effectiveness studies of G-ANC were identified in sub-Saharan Africa, highlighting a key evidence gap for guiding future implementation and scale-up. Exposure to G-ANC enhances utilisation of maternal healthcare such as ANC attendance, postnatal care, family planning uptake and improves birth weight. It also improves maternal engagement, health literacy and empowerment through a highly participatory learning approach and peer support. Nevertheless, no notable difference was observed between the groups in terms of likelihood of giving birth in health facilities. CRD42024565501.

Long-term cancer survivors may suffer from significant bio-psycho-social burden even years after treatment. Yet, a structured approach to detect and address bio-psycho-social burden of long-term cancer survivors in primary care is missing in Germany, although family physicians are the primary medical contact for most patients. In this paper, we describe the DELPHIN study aiming to develop and test a structured care model for long-term cancer survivors. The DELPHIN study and intervention will facilitate networking of regional medical and non-medical services. This protocol describes the intervention as well as the pilot study. The DELPHIN study comprises a developmental and a feasibility phase. In the developmental phase, we will assess (1) the current care needs of long-term cancer survivors (n=1000) using a cross-sectional questionnaire survey; (2) in an additional cross-sectional questionnaire survey, we will address medical and non-medical care providers to assess current care practice for this patient group (n&#x2265;250); (3) a qualitative interview study with both long-term cancer survivors (n=12) and family physicians (n=10) will assess patients' needs and barriers for effective care. Results will then be triangulated to inform development of the DELPHIN intervention. The intervention shall include the following elements: the DELPHIN mobile app for patients with a digital screening tool, a digital treatment plan, a survivorship passport and information on regional medical and non-medical providers. Additionally, a DELPHIN website and a DELPHIN eLearning tool for family physicians will be developed. The subsequent feasibility study will follow 100 long-term cancer survivors using the DELPHIN app for 4&#x2009;months, with two assessments (t0=baseline; t1=4 months follow-up) regarding the usability of the app and their health-related quality of life. The eLearning tool will be tested by 50 family physicians using three measurement points to evaluate learning success (ta=before; tb=directly after eLearning; tc=after 4 weeks). The DELPHIN study seeks to address cancer survivors' unmet bio-psycho-social needs through implementing a digital mobile application. Positive results in the feasibility study will provide the basis for a future effectiveness study and integration into routine care. The study was reviewed by the Ethics Committee of the University of Bonn, Germany (No: 2024-409&#x2009;BO) which did not object to the study. DRKS00035726.

Tuberous sclerosis complex (TSC) is a rare genetic disorder caused by pathogenic variants in the TSC1 or TSC2 genes. Apart from multisystem physical manifestations, most individuals with TSC experience TSC-associated neuropsychiatric disorders (TAND). Little is known about how TAND severity changes over time and what factors may predict these changes. Preliminary data suggest the presence of differential TAND severity trajectories. Caregiver well-being may act as a mediator of TAND severity, and a well-being intervention designed for caregivers of children with developmental disabilities may improve caregiver well-being. The study aims are to (1) examine longitudinal trajectories of TAND severity in a large sample of individuals with TSC and to examine potential predictors of differential trajectories, (2) evaluate the association between caregiver well-being characteristics, TAND severity, and severity trajectories, and (3) adapt and evaluate the feasibility, acceptability, and potential efficacy of a brief, online group-based well-being intervention for family caregivers. For the first 2 aims, 500 individuals with TSC or their caregivers will be recruited in an accelerated longitudinal design to document TAND severity at 5 time points over 12 months via a web-based app. At each time point, participants will complete demographic, TSC characteristics, intervention, and well-being questionnaires. Data will be analyzed using latent class mixed and multinomial regression modeling (aim 1) and structural equation and mediation modeling (aim 2). Participatory methods will be used to adapt an existing caregiver well-being intervention for the TSC community (aim 3). Thirty caregivers will be invited to participate in the adapted group-based online well-being intervention. This study was funded from July 2024 (HT94252410790 and HT94252410791), and ethics approvals were obtained from the University of Cape Town (July 2024), Vrije Universiteit Brussel (November 2024), and the Department of Defense Office of Human Research Oversight (December 2024). The TAND Toolkit app was adapted for longitudinal data collection (aims 1 and 2). Recruitment started in December 2025 and will continue until 500 participants are enrolled (anticipated December 2026). Primary outputs are expected by July 2028. For aim 3, experiential and adaptation workshops were completed in June 2025, the pilot intervention was delivered in November 2025, and data collection will continue till May 2026. Outputs are expected by December 2026. Identification of differential longitudinal TAND trajectories and their correlates will stimulate research in TSC and generate evidence for the self-report quantified TAND checklist as a clinical outcome measure. Understanding the association between caregiver well-being and TAND severity will provide support for targeted well-being interventions. A successful pilot trial will provide preliminary data for larger-scale clinical trials, with the potential to support caregivers and improve TAND outcomes. Together, the findings from the study will help close the gap in interventions for TAND. ClinicalTrials.gov NCT06879665; https://clinicaltrials.gov/study/NCT06879665. DERR1-10.2196/91726.

As the first peoples of Australia, Aboriginal and Torres Strait Islander peoples have continuing cultures that are essential to wellbeing. Complex sociocultural, health, and wellbeing inequities stemming from colonization, settler-colonialism, and mental health system challenges have led to high rates of negative mental health and wellbeing for Aboriginal and Torres Strait Islander peoples. Improving Aboriginal and Torres Strait Islander mental health and wellbeing outcomes is a national public health priority. Social and emotional wellbeing (SEWB) and the cultural determinants of health (CDH) provide evidence-based approaches for providing culturally centered wellbeing support. There is a need to increase the availability, accessibility, and effectiveness of culturally relevant, holistic, and strengths-based wellbeing supports. It is essential that Aboriginal communities have self-determined opportunities to develop and implement culturally centered wellbeing supports informed by SEWB and the CDH. Aboriginal digital health and wellbeing support research is an emerging field offering potential to help improve wellbeing outcomes. This study aims to explore how virtual reality (VR) could be used to provide SEWB and CDH support for Aboriginal and Torres Strait Islander peoples. This study protocol outlines a 3-phase mixed-methods approach that will inform the co-design and codevelopment of a VR application that aims to provide SEWB and CDH support. In partnership with Tribal Warrior, an Aboriginal Community Controlled Organization, Studio Gilay, an Aboriginal-led animation and storytelling studio, and Phoria, an Australian immersive storytelling technology company, this study will assess cultural relevance, acceptability, and feasibility of the VR application. Using Indigenist and Participatory Action Research methodologies, purposive sampling will be used to recruit 35 Tribal Warrior staff and Aboriginal community members to participate in each phase of research. Qualitative data collection will occur in each phase through yarning circles. Reflexive thematic analysis will guide qualitative analysis. Phase 3 will involve a quantitative survey, generating cultural relevance, acceptability, and feasibility evidence. Descriptive statistics analysis will be used to report results. As of April 2026, data collection and analysis for phases 1 and 2 are complete. This study will culminate in the development and assessment of a co-designed and codeveloped VR application that aims to provide SEWB and CDH support for Aboriginal peoples. Findings from each phase will be published in academic papers and nonacademic outputs. The VR application will be implemented by Tribal Warrior into existing community programs and supports. Findings from this study have potential implications for improving availability and accessibility to culturally centered wellbeing supports for Aboriginal and Torres Strait Islander peoples. Assessing the cultural relevance, acceptability, and feasibility of using VR technology to provide culturally centered wellbeing support will contribute novel evidence to the fields of public health, digital health, and design-based research.

Antidepressant use and withdrawal are often accompanied by side effects such as dizziness, weight gain, and sexual dysfunction. Antidepressants and their associated side effects are stigmatized topics. Social media platforms such as Reddit are considered "safe spaces" by users because they can freely share their experiences and receive support. This pilot study analyzed discussions from the subreddit r/depression to examine how users discuss antidepressant side effects, withdrawal symptoms, and related experiences of depression. We scraped 10 high-engagement threads from the subreddit r/depression using the Python wrapper for the Reddit application programming interface and conducted a 2-step analysis. First, a pilot test was performed using sertraline (Zoloft) threads, followed by an analysis of all antidepressant-related threads. A subset of the data was hand-coded to create and validate regular expressions, which were then used to automatically code the remaining dataset. The resulting coded data were analyzed using epistemic network analysis and complemented with qualitative analysis and elements of semantic networks and hypergraphs. We found that posts were more likely to discuss emotional flattening, sleep, and memory or cognitive issues (Mann-Whitney U=33,235.5; P=.003). Additionally, references to dizziness tended to co-occur with discussions of withdrawal and offers of empathy, while reports of dream-related side effects and requests for personal experiences also co-occurred frequently. By incorporating elements of semantic networks and hypergraphs, we deduced that offers of empathy occurred when users said they experienced dizziness caused by withdrawal, while mentions of "brain zaps" associated with withdrawal often co-occurred with offers of teaching support. Study findings highlight how individuals experiencing antidepressant side effects and withdrawal symptoms use online forums such as Reddit to seek validation, share coping strategies, and provide emotional support to others. The nuanced discussions observed, particularly those related to empathy, symptom management, and shared learning, underscore the role of peer-to-peer networks in normalizing stigmatized experiences and mitigating isolation associated with antidepressant use. Clinicians and digital health practitioners can leverage these insights to better understand patient language, emotional framing, and informational needs outside clinical settings.

Worldwide, there are an estimated 55 million people living with dementia, with an estimated cost to society of US $1.3 trillion a year. These numbers are predicted to rise, with the dementia population doubling every 20 years, reaching an estimated 152 million by 2050. There is currently no cure for dementia, with the condition having a significant impact on people's independence and quality of life (QoL). It is therefore vital that people living with dementia are given the support that helps them to manage these impacts and optimizes their QoL. To do this, a more personalized and detailed understanding of a patient's daily life is needed. Patient-reported outcome measures (PROMs) have long been associated with significant benefits in other domains, though the use of PROMs in routine dementia care is lacking. Factors such as platform design, literacy, language proficiency, and physical and mental capability can all severely impact the ability of people living with dementia to complete PROMs routinely. This study aims to co-design and evaluate a novel multimodal digital application to enable people living with dementia to regularly self-report QoL PROMs. The research questions were (1) What features, questions, and modalities do people living with dementia prefer when interacting with a digital application that enables them to self-report QoL PROMs? (2) What are the design considerations and specifications for a digital application to enable people living with dementia to self-report QoL data via PROMs? People living with dementia, informal caregivers (ICs), and health care professionals (HCPs) participated in iterative co-design workshops and a final summative evaluation to co-design a multimodal digital application from initial concepts to a functional prototype. Prototypes were presented using cognitive walkthroughs and think-aloud protocols, and data were analyzed following framework analysis using interaction design and features voted for by participants using MoSCoW (Must Have, Should Have, Could Have, Won't Have). A total of 25 participants took part in this study (people living with dementia=9, ICs=4, and HCPs=12) developing and evaluating a total of 34 prototypes into a single final functional multimodal prototype that can collect PROMs using text, visuals, and voice. A functional prototype for a novel digital application was developed that enables people living with dementia to regularly self-report QoL PROMs, which was then successfully evaluated by people living with dementia, ICs, and HCPs. The prototype was co-designed with direct involvement from people living with dementia during every stage of development, and this is one of the first studies to evaluate perceptions from key stakeholders (including people living with dementia, ICs, and HCPs) regarding the use of electronic patient-reported outcome measures for dementia in routine care.