Perceptions on support, challenges and needs among parents and caregivers of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study.

BACKGROUND: Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS: We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS: Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION: Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.

Knowledge, perceived needs of continuous professional's development, and associated factors among healthcare workers in East Ethiopia: a multi-health facility-based cross-sectional study.

BACKGROUND: The Ethiopian Ministry of Health (EMOH) has recently introduced a Continuous Professional Development (CPD) program for healthcare workers to ensure they maintain the necessary competencies to meet the community's health needs. However, there is limited information on healthcare workers' knowledge and perceived need for CPD. This study aims to assess healthcare workers' CPD knowledge, perceived needs, and factors associated with these in eastern Ethiopia. METHODS: A health facility-based cross-sectional quantitative study was conducted from September 1, 2022, to October 30, 2022. Health facilities and study participants were selected using a simple random sampling technique. A total of 731 healthcare professionals were randomly selected. Data was collected using a self-administered questionnaire developed from national CPD guidelines. Data analysis was performed using the STATA statistical package version 14. A logistic regression model was used to assess the association between predictors and the outcome variable. Adjusted odds ratios with 95% confidence intervals were calculated to determine the strength of the association. A p-value < 0.05 was considered statistically significant. RESULTS: In this study, 731 healthcare workers participated. Among them, 65.80% (95% CI: 62.35%, 69.24%) had knowledge of CPD, and 79.48% (CI95% 76.54, 82.41) expressed a strong perceived need for CPD. Female healthcare workers [AOR: 0.54 (95% CI: 0.37, 0.78)] and lack of internet access [AOR: 0.68 (95% CI: 0.47-0.97)] were predictors of knowledge of CPD. Age above 35 [AOR: 0.39 (95% CI: 0.17, 0.91)] and being female [AOR: 0.59 (95% CI: 0.40-0.87)] were predictors of a strong perceived need for CPD. CONCLUSION: The study found that there was a low level of knowledge about Continuing Professional Development among healthcare workers. The perceived needs of healthcare workers varied. It is important for health sectors and stakeholders to prioritize developing strategies that address knowledge gaps, particularly among female healthcare workers, improve access to the Internet for CPD resources, and address the diverse needs of professionals for effective CPD implementation.

Identifying gaps in healthcare: a qualitative study of Ukrainian refugee experiences in the German system, uncovering differences, information and support needs.

BACKGROUND: The 5.8 million Ukrainian refugees arriving in European countries must navigate varying healthcare systems and different and often unknown languages in their respective host countries. To date, there has been little exploration of the experiences, perceived differences, information and support needs of these refugees regarding the use of healthcare in Germany. METHODS: We conducted ten qualitative interviews with Ukrainian refugees living in Germany from February to May 2023, using Ukrainian, English and German language. The transcribed interviews were analysed using the qualitative content analysis method according to Kuckartz and Rädiker with the MAXQDA software. RESULTS: In general, participants consistently had a positive experience of the German healthcare system, particularly regarding the quality of treatments and insurance. Differences have been reported in the structure of the healthcare systems. The Ukrainian healthcare system is divided into private and state sectors, with no mandatory insurance and frequent out-of-pocket payments. Pathways differ and tend to focus more on clinics and private doctors. General practitioners, often working in less well-equipped offices, have only recently gained prominence due to healthcare system reforms. Initiating contact with doctors is often easier, with much shorter waiting times compared to Germany. Interviewees often found the prescription requirements for many medications in Germany to be unusual. However, the mentioned differences in healthcare result in unmet information needs among the refugees, especially related to communication, navigating the healthcare system, health insurance, waiting times and medication access. These needs were often addressed through personal internet research and informal (social media) networks because of lacking official information provided during or after their arrival. CONCLUSIONS: Despite the positive experiences of Ukrainian refugees in the German healthcare system, differences in the systems and language barriers led to barriers using healthcare and information needs among refugees. The dissemination of information regarding characteristics of the German health care system is crucial for successful integration but is currently lacking. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00030942, date of registration: 29.12.2022.

Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults.

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.

Evaluation of ChatGPT's responses to information needs and information seeking of dementia patients.

Many people in the advanced stages of dementia require full-time caregivers, most of whom are family members who provide informal (non-specialized) care. It is important to provide these caregivers with high-quality information to help them understand and manage the symptoms and behaviors of dementia patients. This study aims to evaluate ChatGPT, a chatbot built using the Generative Pre-trained Transformer (GPT) large language model, in responding to information needs and information seeking of such informal caregivers. We identified the information needs of dementia patients based on the relevant literature (22 articles were selected from 2442 retrieved articles). From this analysis, we created a list of 31 items that describe these information needs, and used them to formulate 118 relevant questions. We then asked these questions to ChatGPT and investigated its responses. In the next phase, we asked 15 informal and 15 formal dementia-patient caregivers to analyze and evaluate these ChatGPT responses, using both quantitative (questionnaire) and qualitative (interview) approaches. In the interviews conducted, informal caregivers were more positive towards the use of ChatGPT to obtain non-specialized information about dementia compared to formal caregivers. However, ChatGPT struggled to provide satisfactory responses to more specialized (clinical) inquiries. In the questionnaire study, informal caregivers gave higher ratings to ChatGPT's responsiveness on the 31 items describing information needs, giving an overall mean score of 3.77 (SD 0.98) out of 5; the mean score among formal caregivers was 3.13 (SD 0.65), indicating that formal caregivers showed less trust in ChatGPT's responses compared to informal caregivers. ChatGPT's responses to non-clinical information needs related to dementia patients were generally satisfactory at this stage. As this tool is still under heavy development, it holds promise for providing even higher-quality information in response to information needs, particularly when developed in collaboration with healthcare professionals. Thus, large language models such as ChatGPT can serve as valuable sources of information for informal caregivers, although they may not fully meet the needs of formal caregivers who seek specialized (clinical) answers. Nevertheless, even in its current state, ChatGPT was able to provide responses to some of the clinical questions related to dementia that were asked.

What do the teachers want? A targeted needs assessment survey for prospective didactic training of psychiatry medical educators.

Objectives: Physicians and psychologists at psychiatric university hospitals are assigned teaching tasks from the first day of work without necessarily having the prerequisite training in teaching methods. This exploratory survey provides a needs-based analysis for the prospective didactic training of physicians and psychologists at psychiatric hospitals in Germany, Austria and Switzerland. Methods: An online questionnaire was distributed at medical schools via email in German-speaking countries in Europe. All physicians involved in teaching medical students at psychiatry faculties were eligible to participate in the survey. Participants were further requested to recruit eligible participants (snowball sampling). Responses were analyzed descriptively, and differences between groups were calculated using nonparametric Mann-Whitney U tests (p<.05). Results: Overall, 97 respondents (male=55, female=42; mean age= 40.6) from 19 medical schools completed the survey. The respondents consisted of 43 residents, 39 specialists, 6 chief physicians and 9 psychologists. Of the respondents, 97.6% rated didactic competence as either highly relevant or rather relevant for teaching medical students. The highest overall interest was shown for bedside teaching (mode=4; IQR: 2-4) and error culture (mode=3; IQR: 2-4). Respondents expressed the highest training needs for topics regarding presentation and communication (mode=3; IQR: 2-3). Resident physicians were significantly more interested in bedside teaching (U=362.0, p=0.004) and roleplay (U=425.0; p=0.036) than specialist physicians, who were more interested in examination didactics (U=415.0; p=0.022). Chief physicians displayed significantly deeper interest in group dynamics (U=51; p=0.023) than specialist physicians. In-person training was preferred by a majority of respondents, and 27.4% preferred online/web-based training. Conclusions: The majority of physicians and psychologists at psychiatric university hospitals considered professional development for faculty to be helpful for teaching medical students. Bedside teaching and error culture management were the most desired teaching topics for training medical teachers. Tailored educational interventions are recommended, with target-oriented priorities for different hierarchical levels.

New insights about community benefit evaluation: Using the Community Health Implementation Evaluation Framework to assess what hospitals are measuring.

BACKGROUND: Nonprofit hospitals are required to conduct community health needs assessments (CHNA) every 3 years and develop corresponding implementation plans. Implemented strategies must address the identified community needs and be evaluated for impact. PURPOSE: Using the Community Health Implementation Evaluation Framework (CHIEF), we assessed whether and how nonprofit hospitals are evaluating the impact of their CHNA-informed community benefit initiatives. METHODOLOGY: We conducted a content analysis of 83 hospital CHNAs that reported evaluation outcomes drawn from a previously identified 20% random sample ( n = 613) of nonprofit hospitals in the United States. Through qualitative review guided by the CHIEF, we identified and categorized the most common evaluation outcomes reported. RESULTS: A total of 485 strategies were identified from the 83 hospitals' CHNAs. Evaluated strategies most frequently targeted behavioral health ( n = 124, 26%), access ( n = 83, 17%), and obesity/nutrition/inactivity ( n = 68, 14%). The most common type of evaluation outcomes reported by CHIEF category included system utilization ( n = 342, 71%), system implementation ( n = 170, 35%), project management ( n = 164, 34%), and social outcomes ( n = 163, 34%). PRACTICE IMPLICATIONS: CHNA evaluation strategies focus on utilization (the number of individuals served), with few focusing on social or health outcomes. This represents a missed opportunity to (a) assess the social and health impacts across individual strategies and (b) provide insight that can be used to inform the allocation of limited resources to maximize the impact of community benefit strategies.

Unpacking patient perspectives on social needs screening: A mixed methods study in western Colorado primary care practices.

OBJECTIVE: Explore factors influencing patient comfort with and perceived helpfulness of screening for health-related social needs. METHODS: In a parallel secondary mixed-methods analysis of data from three primary care clinics, we used logistic regression to examine effects of practice- and patient-level factors on comfort with and perceived helpfulness of social needs screening. We applied narrative analysis to 20 patient interviews to further understand how patients' lived experiences influenced their perceptions of screening. RESULTS: Among 511 patients, receiving an explanation about screening was associated with increased odds of comfort (OR 2.1, 95% CI [1.1-4.30]) and perceived helpfulness (OR 4.7 [2.8-7.8]). Those experiencing more needs were less likely to report comfort (3 + needs vs. 0: OR 0.2 [0.1-0.5]). Narratives elucidated how a history of stigmatizing experiences increased discomfort disclosing needs and captured how relationship quality with healthcare teams influenced perceptions of screening for patients with extensive needs. CONCLUSION: Practice-level (screening explanation and therapeutic rapport) and patient-level factors (history and extent of needs) are key influences on comfort with and perceived helpfulness of screening. PRACTICE IMPLICATIONS: Good communication about screening benefits all patients. Patients with extensive social needs may require additional sensitivity to their past experiences.

Care Needs of Older Adults With Urinary Incontinence: A Cross-Sectional Study.

PURPOSE: To explore care requirements of older adults with urinary incontinence (UI) and contributing factors. METHOD: This cross-sectional study used the Older Adults Urinary Incontinence Care Needs Inventory to survey participants with UI in three large-scale tertiary hospitals located in Guangzhou City, China, from January 2023 to November 2023. Statistical analyses, including analysis of variance, t tests, correlation analyses, and linear regression models, were conducted to assess factors influencing participants' care needs. RESULTS: A total of 530 older adults with UI participated in the survey and mean standardized score for overall care needs was 78.65 (SD = 5.01), with mean scores for each dimension ranging from 70.88 (SD = 10.55) for social participation needs to 82.45 (SD = 7.11) for health education needs. Factors that were found to influence incontinence care needs in older adults included age, literacy level, number of leaks, and type of disease (F = 37.07, adjusted R2 = 0.290, p < 0.001). CONCLUSION: Comprehensive care for older adults with UI, encompassing physiological, psychological, and social aspects, is crucial. It is essential to tailor care to individual needs and characteristics, taking into account factors, such as age and education, to ensure effective care. [Journal of Gerontological Nursing, 50(5), 43-49.].

Assessing patient information needs for new antidiabetic medications to inform shared decision-making: A best-worst scaling experiment in China.

BACKGROUND: Shared decision-making (SDM) is a patient-centred approach to improve the quality of care. An essential requirement for the SDM process is to be fully aware of patient information needs. OBJECTIVES: Our study aimed to assess patient information needs for new antidiabetic medications using the best-worst scaling (BWS) experiment. METHODS: BWS tasks were developed according to a literature review and the focus group discussion. We used a balanced incomplete block design and blocking techniques to generate choice sets. The final BWS contains 11 attributes, with 6-choice scenarios in each block. The one-to-one, face-to-face BWS survey was conducted among type 2 diabetic patients in Jiangsu Province. Results were analyzed using count-based analysis and modelling approaches. We also conducted a subgroup analysis to observe preference heterogeneity. RESULTS: Data from 539 patients were available for analysis. The most desired information domain was the comparative effectiveness of new antidiabetic medications. It consists of the incidence of macrovascular complications, the length of extended life years, changes in health-related quality of life, the incidence of microvascular complications, and the control of glycated haemoglobin. Of all the attributes, the incidence of macrovascular complications was the primary concern. Patients' glycemic control and whether they had diabetes complications exerted a significant influence on their information needs. CONCLUSIONS: Information on health benefits is of critical significance for diabetic patients. Patients have different information needs as their disease progresses. Personalized patient decision aids that integrate patient information needs and provide evidence of new antidiabetic medications are worthy of being established. PATIENT OR PUBLIC CONTRIBUTION: Before data collection, a pilot survey was carried out among diabetic patients to provide feedback on the acceptability and intelligibility of the attributes.

Assessing the mental health needs of Yazidi adolescents and young adults in an Iraqi Kurdi IDP Camp: a focus group study.

BACKGROUND: Internally displaced people (IDP) in Iraq are 1.2 million (as March 2023). Protracted refugee status endangers the mental health, especially of minorities who survived persecution and conflict, such as the Yazidis. This study aims to identify the mental health needs of Yazidi adolescents and young adults (AYA) in the IDP camp of Bajed Kandala (Iraqi Kurdistan). METHODS: A focus group discussion (FGD) study was conducted between April and August 2022. The FGDs involved AYAs, as well as the staff of the clinic of the Bajed Kandala camp. An inductive approach was adopted referring to the 'theme' as the unit of content analysis of the text. All FGDs were recorded and transcribed. The analysis was carried out independently by two researchers. The inter-rater agreement was assessed through the Cohen's k. RESULTS: A total of 6 FGDs were conducted. The participants were 34 of whom 21 (61.8%) females with a median age of 18.5 years (IQR 17.0-21.0). A total of 156 themes were found as relevant to the objective of this study. Four main areas and twelve subareas of needs in mental health were identified. The interrater agreement over the main area and subareas was good (κ = 0.78 [0.95CI 0.69-0.88], κ = 0.82 [0.95CI 0.73-0.91], respectively). The four areas had a similar frequency: Activities (28.2%), Individual (27.6%), Social relationships (22.4%) and Places/setting (21.8%). The subareas 'community' and 'internal resources' were labelled as negative 85.7% and 61.9% of the time, respectively. These sub-areas referred to stigma and self-stigma towards mental health. The subarea 'female condition' was always considered as negative, as well as the subareas 'camp' and 'tent' referring to housing as an important social determinant of mental health. CONCLUSIONS: Community stigma and self-stigma are two still important factors preventing the achievement of mental well-being. Alongside these, a gender gap in mental health was identified in the FGDs. These factors should be taken into account in order to guide future mental health interventions in refugee camps.

A substance use disorder training curriculum for internal medicine residents using resident-empaneled patients.

BACKGROUND: Internal Medicine (IM) residents frequently encounter, but feel unprepared to diagnose and treat, patients with substance use disorders (SUD). This is compounded by negative regard for patients with SUD. Optimal education strategies are needed to empower IM residents to care for patients with SUD. The objective of this study was to evaluate a brief SUD curriculum for IM residents, using resident-empaneled patients as an engaging educational strategy. METHODS: Following a needs assessment, a 2-part SUD curriculum was developed for IM residents at the University of Chicago during the 2018-2019 academic year as part of the ambulatory curriculum. During sessions on Opioid Use Disorder (OUD) and Alcohol Use Disorder (AUD), a facilitator covered concepts about screening, diagnosis, and treatment. In session, residents completed structured worksheets applying concepts to one of their primary care patients. A post-session assessment included questions on knowledge, preparedness & attitudes. RESULTS: Resident needs assessment (n = 44/105, 42% response rate) showed 86% characterized instruction received during residency in SUD as none or too little, and residents did not feel prepared to treat SUD. Following the AUD session, all residents (n = 22) felt prepared to diagnose and treat AUD. After the OUD session, all residents (n = 19) felt prepared to diagnose, and 79% (n = 15) felt prepared to treat OUD. Residents planned to screen for SUD more or differently, initiate harm reduction strategies and increase consideration of pharmacotherapy. CONCLUSIONS: A brief curricular intervention for AUD and OUD using resident-empaneled patients can empower residents to integrate SUD diagnosis and management into practice.

Development of an implementation plan for a school-based multimodal approach for depression and suicide prevention in adolescents.

Strong Teens and Resilient Minds (STORM) is a multimodal, school-based approach for depression and suicide prevention in adolescents that is currently implemented in a region in the Netherlands. The STORM approach will be implemented in new regions in the coming years. This study used the implementation mapping protocol to report on the development of the STORM implementation plan. First, a needs assessment was conducted through semi-structured interviews with stakeholders and brainstorming sessions with regional programme leaders in the two regions that started implementing STORM in 2023. This led to the identification of six main barriers to implementation: high level of demands for schools, insufficient understanding of the programme content, insufficient network collaboration, no perceived relative advantage of STORM by stakeholders, lack of attention to sustainability, and high work pressure. Second, performance and change objectives were formulated based on these barriers. For example, a performance objective for potential providers was that they felt supported by STORM. Third, implementation strategies were selected from theory and translated into practical applications through brainstorming sessions with programme leaders. The following strategies were included in the implementation plan: collaborate with similar initiatives within the region, free up time for STORM tasks, tailor strategies, identify and prepare STORM champions, and promote network weaving. Last, a plan to evaluate the implementation of STORM and the application of the STORM implementation plan was formulated. Planned evaluation research will provide more insight into the usefulness and impact of the STORM implementation plan.

Unmet rehabilitation needs in the first 6 months post-injury in a trauma centre population with moderate-to-severe traumatic injuries.

OBJECTIVE: To describe the needs for subacute inpatient rehabilitation and community-based healthcare services, rehabilitation, and social support in patients with moderate-to-severe traumatic injury in the first 6 months post-injury. Further, to explore associations between sociodemographic and clinical characteristics and unmet needs. DESIGN: Multicentre prospective cohort study. SUBJECTS: Of 601 persons (75% males), mean (standard deviation) age 47 (21) years, admitted to trauma centres in 2020 with moderate-to-severe injury, 501 patients responded at the 6-month follow-up and thus were included in the analyses. METHODS: Sociodemographic and injury-related characteristics were recorded at inclusion. Estimation of needs was assessed with the Rehabilitation Complexity Scale Extended-Trauma and the Needs and Provision Complexity Scale on hospital discharge. Provision of services was recorded 6 months post-injury. Multivariable logistic regressions explored associations between baseline variables and unmet inpatient rehabilitation and community-based service needs. RESULTS: In total, 20% exhibited unmet needs for subacute inpatient rehabilitation, compared with 60% for community-based services. Predictors for unmet community-based service needs included residing in less central areas, profound injury severity, severe head injury, and rehabilitation referral before returning home. CONCLUSION: Inadequate provision of healthcare and rehabilitation services, particularly in the municipalities, resulted in substantial unmet needs in the first 6 months following injury.

Erratum: Exploring Communication about Fall Risk and Prevention between Internal Medicine Residents and Geriatric Patients: A Needs Assessment: Erratum.

[This corrects the article DOI: 10.14423/SMJ.0000000000001652.].

Self-Reported Social Determinants of Health and Area-Level Social Vulnerability.

Importance: Many health care systems are investing resources in identifying social determinants of health (SDoH) needs and facilitating interventions among the populations they serve. Because self-reported SDoH information is lacking, area-level measures are often used to estimate needs and direct resources. Objective: To describe the large-scale deployment of SDoH assessments by a health system and determine the extent to which self-reported SDoH needs identified therein are associated with census tract-level social vulnerability measured using the Social Vulnerability Index (SVI). Design, Setting, and Participants: This cross-sectional study assessed SDoH needs between January 1, 2020, and April 30, 2023, in both payer and clinical care settings. Modalities included telephonic outreach, face-to-face clinical interactions, self-entry into a tablet or kiosk, and web-based survey tools. Participants included individuals who responded to the assessment and had sufficient information for census tract identification. Respondents included both Highmark Health Plan members and nonmembers. Health plan members responded to the assessment through health plan programs or platforms, and both members and nonmembers responded to assessments during inpatient or outpatient encounters with the affiliated health system. Main Outcomes and Measures: Overall and domain-specific SDoH needs self-reported through assessments, and severity and complexity of needs identified. Residential social vulnerability measures included overall SVI and the 4 conceptual themes comprising overall SVI. Results: In total, 841 874 assessments were recorded for 401 697 individuals (55.1% women; median [IQR] age, 55 [41-70] years). Social determinants of health needs were identified in 120 769 assessments (14.3%). Across all SDoH domains, increasing SVI was associated with a higher positivity rate (eg, 11.2% of those residing in the lowest-risk SVI quintile reported a need compared with 22.7% among those residing in the highest-risk quintile). Associations varied by SDoH domain and SVI theme. After adjusting for demographic and screening characteristics, odds of positive screening among those residing in the highest-risk SVI quintile were 1.74 (95% CI, 1.62-1.86) to 3.73 (95% CI, 3.48-4.00) times the odds among those residing in lowest risk quintile. Conclusions and Relevance: In this cross-sectional study, the overall level of SDoH needs generally corresponded to area-level vulnerability. Some SDoH domains appeared far more sensitive to community characteristics than others. Notably, even among individuals from the highest-risk areas, the positive screening rate was roughly 1 in 4. These findings underscore the importance of individual-level SDoH data for service provision planning and health services research.

Social Needs Screening and Intervention in Pediatric Primary Care: Impact on Families' Experience of Care.

INTRODUCTION/OBJECTIVES: Social determinants of health (SDoH) screening and intervention in pediatric primary care depends upon caregiver disclosure of adverse household or social conditions and thus may be influenced by perceived bias or stigma. This paper examines to what extent parents' experience of their child's medical home is associated with their perceptions of a practice-based social needs intervention. METHODS: We conducted a cohort study of data reported by 73 parents of children obtaining care in a medical home with an embedded SDoH navigation program. Using survey data collected in October 2021 and October 2022, we calculated descriptive statistics and non-parametric bivariate analyses of the association between engagement with the SDoH navigation program and parent-reported social needs, stress, and perception of care quality as measured by the Person-Centered Primary Care Measure (PCPCM). RESULTS: Initial ratings of care quality were high (mean baseline PCPCM score = 3.63) and remained high on second interview (mean change in PCPCM score = -0.04, 95%CI -0.16, 0.09, P = .58) despite significant reductions in parents' ratings of access to care over time. Parents reported substantial stress, unmet social needs, and unmet healthcare needs, with 41 families (56%) ever using the practice-based SDoH program, including 16 (22%) who were new users in 2022. There was no association observed between PCPCM score and parent stress, unmet social needs, or use of SDoH services. CONCLUSIONS: Parents' perceptions of care delivered in their child's medical home appears to be stable on repeat measurement, and independent of family context or interactions with social needs navigation services offered in the practice.

[Open educational resources for otorhinolaryngology : A pilot study on needs assessment and implementation]. / Open Educational Resources für die HNO-Heilkunde : Ein Pilotprojekt zur Bedarfsanalyse und Implementierung.

BACKGROUND: Open educational resources (OER) are educational materials licensed openly by authors, permitting usage, redistribution, and in some instances, modification. OER platforms thereby serve as a medium for distributing and advancing teaching materials and innovative educational methodologies. OBJECTIVE: This study aims to determine the present state of OER in otorhinolaryngology and to examine the prerequisites for seamlessly integrating OER into the curricular teaching of medical schools, specifically through the design of two OER blended learning modules. METHODS: OER content in the field of otorhinolaryngology was analyzed on OER platforms, ensuring its relevance to the German medical curriculum. Data protection concerns were addressed with legal counsel. The blended learning modules were developed in collaboration with medical students and subsequently published as OER. RESULTS AND CONCLUSION: This project yielded the first OER from a German ENT department, tailored to the German medical curriculum. One significant barrier to OER use in medicine, more than in other fields, is data protection. This challenge can be navigated by obtaining consent to publish patient data as OER. OER hold the promise to play a pivotal role in fostering cooperation and collaboration among educators, aiding educators in lesson preparation, and simultaneously enhancing didactic quality.

Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study.

BACKGROUND: Rare diseases in Europe are defined as diseases with a prevalence of less than 5 per 10,000 people. Despite their individual rarity, the total number of rare diseases is considerable. Rare diseases are often chronic and complex, affecting physical, mental, and neurological health. People with rare diseases face challenges such as delayed diagnosis, limited medical support, and financial burden. Caregivers, usually family members, bear significant physical and emotional burdens. Understanding the experiences of patients with rare disease and their caregivers is critical to effective care, but this is still underresearched. Better support and understanding of the challenges faced by both patients and caregivers is clearly needed. Our study will explore the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. OBJECTIVE: This study aims to explore the experiences of patients with rare disease and their caregivers with Slovenian health care providers and to create a theoretical model of needs and experiences. METHODS: This is a qualitative thematic analysis study, using the codebook approach. The study will conduct semi-open-ended interviews to understand the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. The interview questions will be based on an extensive literature review. Data from the interviews will be analyzed using thematic analysis to identify patterns and build a thematic map. Data will be analyzed by at least 2 coders. To ensure reliability, respondent validation will be conducted and negative cases investigated. Any discrepancies will be resolved by consulting the entire research team until a consensus is reached. RESULTS: This study was not specifically funded. However, author TC is supported by grant number P3-0339 from the Slovenian Agency for Research and Innovation. This study was approved by the Medical Ethics Committee of the Republic of Slovenia (0120-47/2022/3), and recruitment is expected to begin in May 2024, with data analysis results anticipated by the end of 2025. CONCLUSIONS: This study will fill an important research gap in Slovenia by exploring the needs and experiences of people living with rare diseases and their caregivers. The results will contribute to the broader field of rare diseases and add knowledge that can inform future research processes and intervention strategies. It also aims to identify neglected areas that have a significant impact on the lives of people with rare diseases. This study is important not only because it addresses the immediate needs of the Slovenian rare disease community, but also because it contributes to a discussion on patient-centered care, health policy design, and the inclusion of psychosocial components in health care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/53362.

Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study.

BACKGROUND: Asian Americans with metastatic cancer are an understudied population. The Describing Asian American Well-Being and Needs in Cancer (DAWN) Study was designed to understand the supportive care needs of Chinese-, Vietnamese-, and Korean-descent (CVK) patients with metastatic cancer. OBJECTIVE: This study aims to present the DAWN Study protocol involving a primarily qualitative, convergent, mixed methods study from multiple perspectives (patients or survivors, caregivers, and health care professionals). METHODS: CVK Americans diagnosed with solid-tumor metastatic cancer and their caregivers were recruited nationwide through various means (registries, community outreach newsletters, newspapers, radio advertisements, etc). Potentially eligible individuals were screened and consented on the web or through a phone interview. The study survey and interview for patients or survivors and caregivers were provided in English, traditional/simplified Chinese and Cantonese/Mandarin, Vietnamese, and Korean, and examined factors related to facing metastatic cancer, including quality of life, cultural values, coping, and cancer-related symptoms. Community-based organizations assisted in recruiting participants, developing and translating study materials, and connecting the team to individuals for conducting interviews in Asian languages. Health care professionals who have experience working with CVK patients or survivors with metastatic solid cancer were recruited through referrals from the DAWN Study community advisory board and were interviewed to understand unmet supportive care needs. RESULTS: Recruitment began in November 2020; data collection was completed in October 2022. A total of 66 patients or survivors, 13 caregivers, and 15 health care professionals completed all portions of the study. We completed data management in December 2023 and will submit results for patients or survivors and caregivers to publication outlets in 2024. CONCLUSIONS: Future findings related to this protocol will describe and understand the supportive care needs of CVK patients or survivors with metastatic cancer and will help develop culturally appropriate psychosocial interventions that target known predictors of unmet supportive care needs in Chinese, Vietnamese, and Korean Americans with metastatic cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50032.