This study evaluated the effectiveness of an Educational App for Complementary Therapy in Diabetes Management in improving health literacy, quality of life, and diabetes empowerment through complementary therapy. An assessor- and investigator-blinded randomized controlled trial was conducted. The report of this study adheres to the CONSORT 2025 guideline. Eighty-eight participants with type 2 diabetes who reported complementary therapy use were randomly assigned to either an app-based intervention or a standard-education control group. The eight-session intervention incorporated self-control, cognitive, psychological, and behavioural strategies. Outcomes, including diabetes empowerment, complementary therapy health literacy, and quality of life, were assessed at three time points. Data were analysed using generalized estimating equations. Participants in the intervention group demonstrated statistically significant improvements in CT-related critical health literacy and quality of life compared with the control group, but no statistically significant improvement in diabetes empowerment. Results suggest that the educational app enhances individuals' knowledge and capacity to evaluate the use of complementary therapies. The Educational App for Complementary Therapy in Diabetes Management is a promising digital tool for improving complementary therapy health literacy and quality of life in diabetes care. Although empowerment did not improve, the app's design and alignment with empowerment processes highlight its potential for extended educational and clinical use. Future research should explore longer-term engagement, methods of reinforcement, and broader implementation across diverse populations. Healthcare professionals can utilize the app to enhance patient education on the use of complementary therapies, thereby improving communication, shared decision-making, and the overall quality of diabetes management. What problem did the study address? The use of complementary therapy alongside conventional diabetes care is common, yet individuals often lack adequate knowledge to evaluate its potential benefits, risks, and safety. Disclosure of complementary therapy use to healthcare professionals is frequently low, posing risks of adverse interactions and undermining coordinated care. Knowledge, health literacy, and a supportive environment are critical components of chronic disease management, but they are underexplored in the context of digital interventions focused on the use of complementary therapies. What were the main findings? This study evaluates the Educational App for Complementary Therapy in Diabetes Management for smartphones-a digital educational intervention designed to enhance complementary therapy health literacy and safe decision-making among individuals diagnosed with diabetes. The intervention demonstrated statistically significant improvements in complementary therapy health literacy and quality of life, underscoring its potential clinical utility. While diabetes empowerment did not improve within the study period, the intervention's grounding in the WHO empowerment process framework and interactive features suggest that longer or more reinforced exposure may yield stronger health outcomes. Where and on whom will the research have an impact? The app empowers individuals to make safer and more informed decisions regarding complementary therapy use, improving self-management and quality of life. The findings provide a practical digital tool to support safer CT-related decision-making by helping participants appraise CT information, evaluate benefit-risk, and communicate with healthcare professionals. The research supports the integration of digital health literacy interventions into diabetes management programs, promoting evidence-based and patient-centred practice. This study was reported in accordance with the CONSORT 2025 statement. Professional experts contributed to the co-design of the intervention. The intervention was pilot-tested with patients, whose feedback informed protocol refinements to enhance feasibility and acceptability. ClinicalTrials.gov identifier: NCT06317584.
The digital legacy in end-of-life care: Unspectacular and meaningless, or not enough recognized? An online survey on the attitudes and personal experiences of professionals and volunteers. The digital era has transformed the way individuals construct and perpetuate their identities, leaving an indelible mark not only in the analogue but also in the digital realm. The digital legacy, comprising online artefacts and virtual traces, plays a pivotal role in shaping one's personality and life narrative. Recognizing its impact on the bereaved and the dying and understanding the nuances of digital legacy are crucial for providing meaningful end-of-life care. Despite the increasing importance of this phenomenon, there is a substantial research gap, and a comprehensive discussion regarding the relevance of digital legacy for dignified and value-oriented end-of-life support is lacking in Germany. Based on the recommendations of the German Federal Ministry of Justice regarding the handling of digital legacy, a 34-item questionnaire was developed. A nationwide online survey was conducted using a random sample. Participants were recruited through palliative and hospice organizations with the aim of capturing attitudes, perceived needs, competency requirements, personal experiences and assessments of various professional and occupational groups, including nursing, medicine, social work, and volunteering. The collected data were analysed using descriptive statistics, and four free-text options integrated into the survey were evaluated through content analysis. A total of 396 people participated in the survey, mainly professionals (42.3%) and volunteers (30.8%). For approximately one-quarter of the respondents (26.9%), clear identification was not possible, and they made use of the option 'other'. The majority of respondents were female (82.3%), over 50 years old (74.5%) and had > 5 years of professional or work experience (75.7%), predominantly in outpatient care (66.0%). The study showed that the majority of respondents considered the relevance of the digital legacy as high. Moreover, according to 85.8% of the respondents, it does not receive enough attention in end-of-life care. The way in which digital legacies are dealt with varied considerably and were ambivalent in some cases. There is uncertainty with regard to professional responsibilities and the need for guidance, although most respondents perceived their own skills as inadequate and sought to broaden or deepen their knowledge (90.1%). Additionally, there was little engagement with one's own digital legacy. The free-text responses illustrated a lack of awareness, uncertainty and the desire for further training and supporting materials. The discrepancy between the recognized importance and the lack of direct engagement with one's own digital legacy, as well as the uncertainties in supporting people at the end of their lives, becomes clear and underscores the need for specific programmes that close existing knowledge gaps and promote awareness of how to handle the digital legacy in a valuable and dignified manner in the context of end-of-life care.
Clinical supervision is a key component in the professional development of speech-language pathology students. However, little is known about the quality of supervision in Spanish undergraduate programs, the pedagogical strategies employed, and the extent to which clinical placements meet students' expectations for competency development. To evaluate clinical supervision during pre-professional internships in Speech-Language Pathology degrees in Spain from the perspective of graduates, analyzing the most valued aspects, areas for improvement, and the gap between lived experience and perceived importance. A total of 503 graduates completed a 20-item questionnaire assessing experience and perceived importance across five dimensions: supervisory strategies, supervisory style, autonomy, feedback, and therapeutic context. The instrument underwent content validation, internal consistency analysis, test-retest reliability, exploratory factor analysis, and comparisons between experience and importance. All importance ratings were significantly higher than experience ratings (p < 0.001). The largest discrepancies were observed in feedback and therapeutic context, followed by supervisory style and strategies; autonomy showed a smaller but still significant gap. Only 32% of participants felt professional at the end of their internships. Healthcare and social-healthcare settings were rated higher than educational settings. Results highlight a systematic mismatch between what graduates experienced and what they consider essential for high-quality training. Improving clinical placements requires strengthening structured and reflective feedback, promoting rich and interprofessional learning environments, and adjusting supervisory style and strategies to levels of student autonomy. Findings support the implementation of evidence-based supervision models to enhance clinical training in speech-language pathology. What is already known on this subject Clinical supervision is a critical component of speech-language pathology training, and high-quality supervision supports the development of clinical competence and professional identity. However, limited empirical evidence exists regarding the structure, quality, and characteristics of supervision in Spanish-speaking undergraduate programs, particularly from the perspective of graduates. What this study adds to existing knowledge This study provides large-scale evidence-based on data from 503 graduates-of a systematic and substantial mismatch between the supervision students experienced and the importance they attribute to key supervisory dimensions, using a newly developed and psychometrically validated graduate survey. It identifies the dimensions with the largest discrepancies (feedback, therapeutic context, and supervisory style) and offers clear, empirically grounded priorities for improving supervision in speech-language pathology education. What are the clinical implications of this work? Findings emphasize the need for supervision practices that provide structured and specific feedback, ensure diverse and supportive clinical environments, and adapt supervisory approaches according to students autonomy levels. These insights can guide program development, supervisor training, and quality assurance processes to improve clinical learning experiences and better prepare students for professional practice.
Professional values are fundamental determinants of nursing care quality and ethical practice. Self-compassion has emerged as an important psychological resource that may support nurses' well-being and caregiving performance, particularly in demanding environments such as intensive care units. However, limited evidence exists regarding the relationships among professional values, self-compassion and caring behaviours in intensive care nurses. To examine the relationships between intensive care nurses' professional values, self-compassion and caring behaviours and to determine the mediating role of self-compassion in the relationship between professional values and caring behaviours. A descriptive and correlational study was conducted in the intensive care units of a university hospital in eastern Türkiye between November 2025 and February 2026. Data were collected using the Personal Information Form, Nurses' Professional Values Scale, Short Form Self-Compassion Scale, and Caring Behaviors Inventory. Descriptive statistics, Pearson correlation analysis, hierarchical regression analysis, and PROCESS Macro (Model 4) mediation analysis were used. A total of 134 intensive care nurses participated in the study. Professional values and caring behaviours were high (149.91 ± 12.02 and 167.32 ± 16.73, respectively), whereas self-compassion was moderate (36.66 ± 8.41). Significant positive correlations were found among professional values, self-compassion, and caring behaviours (p < 0.01). Professional values significantly predicted self-compassion (β = 0.418) and caring behaviours (β = 0.580), while self-compassion significantly predicted caring behaviours (β = 0.222). After controlling for gender, income status, unit of work, and number of patients cared for, self-compassion partially mediated the relationship between professional values and caring behaviours (indirect effect = 0.129; 95% CI: 0.036-0.223). The model explained 53% of the variance in caring behaviours. Professional values influence intensive care nurses' caring behaviours both directly and indirectly through self-compassion. Self-compassion appears to be an important psychological mechanism that strengthens the positive effect of professional values on caring behaviours. Enhancing self-compassion may contribute to improving nursing care quality in intensive care settings. Interventions aimed at strengthening self-compassion and educational programmes that promote professional values may enhance caring behaviours among intensive care nurses and improve the quality of patient care.
The problem of hearing impairment in children remains of high medical and social significance, as it negatively affects speech development, social adaptation, and quality of life. Early rehabilitation plays a crucial role, and parental involvement is a key factor in success. In the Russian Federation, ear diseases account for 5% of the structure of childhood disability, necessitating the development of accessible regional rehabilitation programs with active family involvement. To present a comprehensive regional rehabilitation program for children with hearing impairments in the Ivanovo region, developed with the support of the National Medical Research Center for Otorhinolaryngology of the FMBA of Russia, and to describe its main modules aimed at actively involving parents in the process of hearing restoration, speech development, and social adaptation of the child. This work is based on an analysis of the experience of implementing the regional program at the audiology department of the Ivanovo Regional Clinical Hospital with the participation of the Department of Otorhinolaryngology of Ivanovo State Medical University. The description is based on program documentation, session protocols, and interviews with participants (specialists and parents). A qualitative and descriptive analysis was conducted, identifying key modules, rehabilitation stages, and the roles of specialists. The program includes comprehensive diagnostics (audiological, speech therapy, psychological), an individualized rehabilitation plan, and a differentiated approach for users of hearing aids and cochlear implants. Educational modules for parents have been developed: psychological education, training in device handling, communication strategies, parental coaching, psychological support, social navigation, monitoring, and supervision. Innovative components include theater therapy and vocal lessons, which contribute to the development of prosody and strengthen parent-child relationships. The program is implemented by a multidisciplinary team (audiologist, ENT physician, speech-language pathologist, psychologist, social worker, coordinator) in accordance with a calendar model (0-1 month, 1-6 months, 6-24 months, preschool and school stages). Distance learning formats are provided for families from remote areas. The regional program of the Ivanovo region represents an example of a comprehensive family-centered approach that integrates modern evidence-based rehabilitation methods. This experience can serve as a model for the development of similar programs in other regions. Further research will be aimed at quantitative evaluation of the effectiveness of the described modules. Нарушения слуха у детей имеют большое социально-медицинское значение, поскольку негативно влияют на речевое развитие, социальную адаптацию и качество жизни. Ранняя реабилитация играет решающую роль, а участие родителей является ключевым фактором успеха. В Российской Федерации заболевания уха составляют 5% в структуре детской инвалидности, что обусловливает необходимость создания доступных региональных программ реабилитации с активным вовлечением семьи. Представить комплексную региональную программу реабилитации детей с нарушениями слуха в Ивановской области, разработанную при поддержке НМИЦО ФМБА России, и описать ее основные модули, направленные на активное вовлечение родителей в процесс восстановления слуха, развития речи и социальной адаптации ребенка. В основу работы положен анализ опыта реализации региональной программы на базе сурдологического кабинета Ивановской областной клинической больницы при участии кафедры оториноларингологии ФГБОУ ВО «Ивановский ГМУ» Минздрава России. Описание основано на документации программы, протоколах занятий и интервью с участниками (специалистами и родителями). Проведен качественный и описательный анализ с выделением ключевых модулей, этапов реабилитации и роли специалистов. Программа включает комплексную диагностику (аудиологическую, логопедическую, психологическую), индивидуальный план реабилитации и дифференцированный подход для пользователей слуховых аппаратов и кохлеарных имплантов. Разработаны образовательные модули для родителей: психологическое образование, обучение обращению с техникой, коммуникативные стратегии, родительский коучинг, психологическая поддержка, социальная навигация, мониторинг и супервизия. Инновационными компонентами выступают театральная терапия и вокальные занятия, способствующие развитию просодики и укреплению детско-родительских отношений. Программа реализуется мультидисциплинарной командой (аудиолог, врач-оториноларинголог, логопед-дефектолог, психолог, социальный работник, координатор) в соответствии с календарной моделью (0—1 мес, 1—6 мес, 6—24 мес, дошкольный и школьный этапы). Предусмотрены дистанционные формы работы для семей из отдаленных районов. Региональная программа Ивановской области представляет собой пример комплексного семейно-центрированного подхода, интегрирующего современные научно обоснованные методы реабилитации. Опыт может служить моделью для создания аналогичных программ в других регионах. Дальнейшие исследования будут направлены на количественную оценку эффективности описанных модулей.
The aging population presents both opportunities and challenges. Both global and Malaysian statistics have shown that an increase in longevity is also marked by an increase in the time spent in poor health. A key measure of healthy aging is the ability to lead an independent life. This has implications not only for the individual's quality of life but also for society as a whole; loss of independence with age is associated with increased economic burden and reduced workforce productivity. Understanding and subsequently addressing these age-related declines (slowing or reversing them) is critical in improving the health and societal challenges faced by older adults. However, most studies are focused on Western populations. The scarcity of interventions tailored to multiethnic Asian populations is compounded by the fact that existing measurements rely heavily on Western-designed psychometric instruments, which frequently fail in capturing true cognitive health because of large cultural and educational gaps. We aim to examine whether our long-term intervention packages can, over 4 years, significantly slow down the normal rate of aging-related decline in cognitive function and brain structure and function, as well as assess changes in aging-related salivary biomarkers. We will also measure the economic impact of such interventions in a cost-benefit analysis. We propose 3 ecologically valid intervention packages (cognitive stimulation, physical activity, or both combined) and aim to assess them against a control group. We will target a sample of 400 participants as representative of the population of community-dwelling aging citizens in Malaysia (aged 60 years and older). The 5 projects of this study examined (1) psychology (social interaction and emotional well-being); (2) neuroscience, looking at neural markers of cognition (magnetic resonance imaging and electroencephalogram); (3) decision-making (risk and challenges in decision making); (4) economics (cost-benefits and effectiveness of the study interventions); and (5) biological markers of aging, using salivary samples. The Sunway University Institutional Review Board has reviewed and approved the study (SUREC2020/039). Briefly, primary outcomes will include changes in cognitive scores (Montreal Cognitive Assessment), changes in cognitive behavioral measurements, changes in electroencephalogram and structural magnetic resonance imaging, changes in everyday problem-solving and Iowa gambling task scores, changes in salivary biomarkers (lactoferrin, C-reactive protein, and telomere length), and cost-benefit analysis of the intervention. The study grant was awarded in August 2019, with recruitment starting in May 2022 and concluding in July 2023. In 2023, the intervention phase began and is currently ongoing, with the first publications of outcomes expected in 2026. The effectiveness of these interventions will be examined from the perspective of multiple disciplines, including psychology, neuroscience, biology, and economics. We anticipate that the results of our study will be of interest to both the academic and general community and will hopefully influence policymaking. We hope that this study will provide robust and impactful, evidence-based insights on healthy aging and, thus, contribute to improving the overall quality of life associated with aging. ClinicalTrials.gov NCT06376656; https://clinicaltrials.gov/study/NCT06376656. DERR1-10.2196/88268.
To evaluate nursing students' attitudes towards end-of-life care and assess the impact of an elective educational course on shaping these attitudes. A cross-sectional observational study with a post-test-only design was conducted at the University of Padua in northern Italy. The study involved 475 third-year nursing students, with 228 participants (48%) completing an online survey. The validated Frommelt Attitude Toward Care of the Dying Scale, Form B, Italian Version (FATCOD Form B-I) was used, and data were analysed through descriptive statistics, t-tests and correlation analyses. Participants demonstrated overall positive attitudes towards end-of-life care, with a mean FATCOD Form B-I score of 118.65 (SD = 9.63). Female students scored significantly higher in communication (p < 0.001) and family care (p = 0.002) than males. However, no significant differences were found between students who completed the elective palliative care course and those who did not. Fear and discomfort with death negatively influenced relationship building with patients, while communication and active care were strongly correlated (r = 0.45, p < 0.001). Although nursing students exhibited generally positive attitudes, the elective course alone was insufficient to significantly enhance preparedness for end-of-life care. A comprehensive, integrated palliative care education programme is necessary to address emotional barriers and improve relational competencies, ensuring students are equipped for compassionate and competent end-of-life care. Although nursing students exhibited generally positive attitudes towards end-of-life care, theoretical instruction alone proved insufficient to significantly enhance their preparedness for palliative care practice. These findings have direct implications for nursing education and clinical care quality: integrating comprehensive, experiential palliative care education throughout nursing curricula, rather than relying on optional standalone courses, may better equip future nurses to deliver compassionate and competent end-of-life care. Despite international recommendations, many nursing students feel unprepared for end-of-life care. This study examined whether an elective palliative care course produces meaningful attitudinal change among final-year nursing students. Students showed generally positive attitudes, with the highest scores in Family care and Communication. No significant difference emerged between students who attended the elective course and those who did not. The findings impact nursing educators and curriculum designers, ultimately benefiting future nurses and the terminally ill patients and families they will care for. This study was reported in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines for observational studies. No patient or public contribution.
Cervical cancer is the fourth most common cancer among women worldwide, largely caused by the human papillomavirus (HPV). The HPV vaccine has been proven to effectively reduce HPV infection rates and cervical cancer risk, making vaccination a crucial preventive measure. This study aims to evaluate the effectiveness of an educational intervention in improving parents' knowledge, perception, and acceptability of the HPV vaccine. A pre-post research study was conducted in 2024 involving 140 parents in a specialized hospital in Makkah, Saudi Arabia. The intervention consisted of structured educational lectures, PowerPoint presentations, workshops, and parents' group discussions. Pre- and postintervention self-administered surveys were used to assess changes in knowledge, perception, and vaccine acceptability. The intervention resulted in a significant improvement in parents' knowledge regarding HPV and its associated risks. Parental understanding of HPV transmission and vaccine benefits improved greatly following the intervention, rising from 17% to 87%. The mean knowledge score significantly increased from 5.2 ± 2.1 to 9.9 ± 1.8 (P < 0.001), indicating a large effect size (Cohen's d = 0.58). Interestingly, parents with lower educational levels demonstrated the greatest improvement in knowledge scores compared with higher-educated parents (P = 0.039), suggesting that the intervention was particularly effective among this group. Additionally, the intervention positively influenced parental perception and acceptability of the HPV vaccine. The research provides valuable insights into the effectiveness of educational interventions in enhancing parental understanding and HPV vaccine acceptance. The findings contribute to the development of targeted interventions, explicitly challenge prevalent misconceptions about HPV infection, and suggest strategies to improve parental awareness and facilitate informed decision-making regarding HPV prevention and testing in collaboration with stakeholders and community leaders.
IntroductionPelvic floor disorders (PFDs) are common conditions that negatively affect women's quality of life, particularly in low-resource settings where awareness is often limited. Although knowledge of PFDs remains low in many developing settings, evidence from Ethiopia is limited, and the extent and determinants of women's knowledge have not been well explored. Therefore, this study aimed to assess the knowledge of pelvic floor disorders and its determinants among women in Gurage Zone, Central Ethiopia.MethodsA community-based cross-sectional study design was utilized, employing a multistage sampling technique to select 844 women. Data were collected through face-to-face, interviewer-administered questionnaires. The data were entered into EpiData version 3.1 and exported to SPSS version 26 for analysis. Bivariate and multivariable logistic regression analyses were used to identify factors associated with knowledge of pelvic floor disorders (PFDs). Statistical significance was declared at a p-value of less than 0.05 with a 95% confidence interval (CI).ResultsIn this study, the overall prevalence of women's knowledge of pelvic floor disorders was found to be 40.5% (95% CI: 37.1, 43.7). Higher educational status (AOR = 3.28; 95% CI: 2.02, 7.54), being an urban resident (AOR = 2.51; 95% CI: 1.37, 14.03), being multiparous (AOR = 2.43; 95% CI: 1.08, 5.47), being grand multiparous (AOR = 4.21; 95% CI: 1.81, 11.1), and having awareness of pelvic organ prolapse (POP) as a medical condition (AOR = 2.91; 95% CI: 1.57, 5.40) were identified as determinants of women's knowledge of pelvic floor disorders.ConclusionOnly two in five women were knowledgeable about PFD in this study area, which is considered low. These findings underscore the need for targeted educational interventions to bridge knowledge gaps, particularly among populations with lower educational attainment and those living in rural areas.
Sexual difficulties affect 50%-80% of people with multiple sclerosis (PwMS) and arise from neurogenic, symptom-mediated, and psychosocial mechanisms. Despite their prevalence, sexual dysfunction remains under-recognized in multiple sclerosis (MS) care and underrepresented in clinical guidelines. Non-pharmacological interventions-such as psychosexual counseling, educational programs, and physiotherapy-may provide accessible and scalable management options. However, their effectiveness and quality remain uncertain. This review aimed to systematically evaluate and meta-analyze controlled clinical trials of non-pharmacological interventions for sexual difficulties in adults with MS. Eight databases were searched from inception to May 2023, May 2025, and March 2026. Eligible studies were randomized or quasi-randomized trials assessing non-pharmacological interventions targeting sexual function or related outcomes using validated measures. Primary outcomes were sexual function or difficulty; secondary outcomes included sexual distress, satisfaction, and quality of life. Risk of bias was assessed using Version 2 of the Cochrane Risk of Bias tool for randomized trials or Risk of Bias in Non-randomized Studies of Interventions and Grading of Recommendations Assessment, Development, and Evaluation determined the certainty of evidence. Random-effects models were used for meta-analysis. The review followed Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines and was registered with the international prospective register of systematic reviews (PROSPERO; CRD42023399271). Thirty-two studies (N = 1844) met inclusion criteria; 23 contributed to the meta-analysis. Most interventions were psychobehavioral (n = 24), with 4 involving exercise/physiotherapy, 3 combining components and one other non-pharmacological intervention. The pooled effect was large (Hedges g = 2.1, SE = 0.62, P = .001) with high heterogeneity (I2 = 98.88%). Removing 2 outliers reduced the effect to g = 1.27 with high heterogeneity (I2 = 85.15%). Structured counseling models, particularly Permission-Limited Information-Specific Suggestion-Intensive Therapy (PLISSIT)-based interventions for women, showed the largest benefits. However, studies were small, unregistered, and at high risk of bias; most only included heterosexual married women from Iran, limiting generalizability. Structured psychosexual interventions, especially PLISSIT-based models, show promise for improving sexual outcomes in PwMS. Nonetheless, the certainty of evidence and evidence quality are very low, highlighting the need for larger, more diverse, and methodologically rigorous trials.
Adolescents with rare diseases and their families navigate challenges that extend well beyond clinical symptoms, intersecting with educational, social, and structural constraints. In this qualitative study, we examined the lived experiences of adolescents with rare conditions, their caregivers, and healthcare professionals, focusing on the interpersonal and systemic factors that shape well-being and form care pathways within the Greek National Healthcare System (NHS). A constructed interpretive framework for this study integrates ecological, dialogical, and relational dimensions of rare disease experiences. Ten focus groups were conducted, each including two adolescents, two parents, one to two pediatricians and one allied health professional (physiotherapist, speech therapist, occupational therapist, nurse). Semi-structured group interviews were audio-recorded, transcribed verbatim and analyzed using the approach of qualitative content analysis. Adherence to the COREQ-32 criteria supported the systematic design, documentation and presentation of research findings. Analysis yielded eight themes: (a) family dynamics and caregiving burden, (b) educational and occupational challenges, (c) social participation and financial strain, (d) healthcare accessibility and effectiveness, (e) conflicting priorities among adolescents, caregivers and providers, (f) future planning and goal setting, (g) emotional strain as a shared burden, and (h) parental advocacy and activism.  Rare disease experience emerges from the interplay of structural conditions, relational processes and policy dynamics. Ecological forces shape daily life, while dialogical interactions influence how illness is understood and managed and power relations determine whose perspectives are prioritized. Despite these constraints, adolescents, families and healthcare personnel demonstrate resilience and agency, mobilizing resources and developing networks to navigate difficulties within the available healthcare settings. • Adolescent care for rare diseases is often fragmented, adult-oriented, and insufficiently responsive to young people's social, educational, and familial realities. • Young people's lived experiences and meaning-making around rare disease care remain insufficiently explored in research and practice. • An integrated adolescent care framework combines ecological context, dialogical construction of meaning, and critical reflexivity to center adolescents' voices and include the lived experiences of both families and therapists. • Through qualitative study, these concepts are translated into preliminary suggestions, offering an approach for more equitable, youth-friendly care situated in the Greek National Healthcare System.
Improving health-promoting lifestyle behaviors, treatment adherence, and quality of life is important for patients undergoing hemodialysis. This study aimed to evaluate the effects of a PRECEDE-PROCEED model (PPM)-based educational program on health-promoting lifestyle behaviors, treatment adherence, and quality of life among patients undergoing hemodialysis. This study employed a controlled pretest-posttest-follow-up design to evaluate a community-based educational program developed using the PPM. Patients were assigned to either an intervention group (n = 34) or a control group (n = 32) according to their hemodialysis treatment schedules to minimize contamination between groups. The primary outcome was health-promoting lifestyle behaviors measured using the healthy lifestyle behaviors scale II (HLBS-II). Secondary outcomes included treatment adherence and quality of life. Data were collected using the MARS, FCHPS, SDBHP, HLBS-II, and SF-12 scales and analyzed using linear mixed-effects models. Significant group × time interaction effects were identified for HLBS-II total scores, medication adherence, dietary behaviors, fluid control behaviors, and quality-of-life scores in favor of the intervention group (P < .05). The intervention group demonstrated significant improvements in health-promoting lifestyle behaviors, particularly in health responsibility, physical activity, stress management, and interpersonal relations. Improvements in both physical and mental quality-of-life scores were also observed following the intervention. The findings suggest that a PPM-based educational program may improve health-promoting lifestyle behaviors, treatment adherence, and quality of life among patients undergoing hemodialysis. These results support the use of theory-based educational interventions in hemodialysis care.
Depression poses a significant burden among young adults, making it crucial to investigate factors associated with depressive symptoms. This study examined the association between unmet educational aspirations and depressive symptoms in working young adults. Data from the 2021 Seoul Young Adult Panel Study (SYPS) were used. Depressive symptoms were measured using the Center for Epidemiologic Studies Depression (CES-D 11) scale. The association between unmet educational aspirations and depressive symptoms was analyzed using multivariable linear regression analysis. A subgroup analysis was conducted based on job satisfaction level. Of 3402 participants, 392 (11.5%) reported unmet educational aspirations for personal reasons and 412 (12.1%) for circumstantial reasons. Compared to individuals without unmet educational aspirations, those with unmet educational aspirations due to personal (β: 0.77, p = 0.017) and circumstantial (β: 2.17, p < 0.001) reasons had higher CES-D 11 scores, indicating higher levels of depressive symptoms. This increase was particularly pronounced among participants who reported circumstantial unmet educational aspirations and had low job satisfaction. Young adults with unmet educational aspirations, whether for personal or circumstantial reasons, showed higher levels of depressive symptoms. The findings suggest the importance of considering educational aspirations in addressing the mental health of young adults.
This study evaluated the long-term effects of intensive education on functional recovery and quality of life in patients with first-ever mild ischemic stroke. This propensity score-matched cohort study was conducted within the KOSCO (Korean Stroke Cohort for Functioning and Rehabilitation). Four of 9 institutions participated in the educational intervention substudy, recruiting patients between November 2016 and January 2020. Eligible participants were adults aged 19 to 74 years hospitalized within 7 days of a first-ever ischemic stroke, with mild neurological deficits (Korean version of National Institutes of Health Stroke Scale score 1-5), who consented to participate in the study. The intervention consisted of 3 structured education sessions delivered over 3 months. Functional and quality-of-life outcomes were assessed at baseline and at multiple intervals up to 48 months. A matched control group was selected from the primary KOSCO cohort. After matching, 138 participants were included in each group. Baseline characteristics were well balanced. Over the 48-month follow-up period, the intervention group demonstrated greater improvements in the EuroQol-5 Dimension (β=-0.005 [95% CI, -0.009 to -0.001]), Geriatric Depression Scale-Short Form (β=0.147 [95% CI, 0.015-0.279]), and modified Rankin Scale (β=11.48 [95% CI, 0.05-22.92]), compared with controls. No significant group-by-time interactions were found for other functional measures, including the Functional Independence Measure, Korean version of Modified Barthel Index, Fugl-Meyer Assessment, and Korean Mini-Mental State Examination. Structured, intensive, multisession education for patients with first-ever mild ischemic stroke produced favorable long-term effects on quality of life, psychological well-being, and disability, highlighting the value of comprehensive education as part of stroke rehabilitation and secondary prevention. URL: http://cris.nih.go.kr; Unique identifier: KCT0003277.
Callous-unemotional (CU) traits are central to the specifier with Limited Prosocial Emotions in the DSM-5 and ICD-11, reflecting severe emotional and behavioral disturbances. Despite the global use of the Inventory of Callous-Unemotional Traits (ICU), no validated version existed in Urdu. The aim of the present study was to translate, culturally adapt, and validate the Urdu version of the Inventory of Callous-Unemotional Traits (ICU-U) among Pakistani youth. The study consisted of three phases: translation and cultural adaptation of the instrument, assessment of test-retest reliability, and evaluation of structural validity through confirmatory factor analysis, alongside testing of convergent and discriminant validity. Test-retest reliability with bilingual youth (N = 60) was excellent, with the Urdu-Urdu condition demonstrating the highest stability. CFA conducted on a sample of 300 young adults (aged 18-25) supported a refined 12-item two-factor model (Callousness and Uncaring) over the original three-factor and bifactor models, aligning with previous international findings. Internal consistency for both subscales was satisfactory, and the ICU-U demonstrated strong convergent and discriminant validity through expected associations with criminal sentiments and self-control measures. The findings establish the ICU-U as a culturally relevant and psychometrically sound instrument for identifying CU traits in Urdu-speaking populations. Its use holds promise in clinical, educational, and forensic settings for early detection and intervention planning.
Rheumatoid arthritis (RA) is a chronic, systemic inflammatory disease that impacts quality of life and functionality. Its management involves pharmacological and nonpharmacological strategies, including physical exercise and health education. Although patient education is essential, there is no consensus regarding the specific knowledge needs of individuals with RA. This study aimed to assess the health education needs of Brazilian individuals with RA using a mixed cross-sectional observational design and an online questionnaire. Adults over 18 years with a self-reported RA diagnosis were recruited via social media. The questionnaire collected sociodemographic data and information on educational needs. Quantitative data were analyzed descriptively using Microsoft Excel. A subgroup analysis explored the association between years since diagnosis and educational needs through Spearman's correlation and simple linear regression in SPSS, after confirming non-normal distribution (p < 0.05), with a significance level of 5%. Qualitative responses were analyzed using thematic content analysis based on Bardin's method, supported by Braun and Clarke's inductive approach. Results indicate that individuals with RA consider it important to understand basic disease information, biopsychosocial aspects, and topics such as diet, treatment options, patient rights, pain, and physical exercise. A very weak inverse correlation was observed between years since diagnosis and educational needs (ρ = -0.160; p = 0.027), while regression analysis showed no significant predictive effect (β = -0.108; p = 0.137), with low explanatory power (R² = 0.012). The study highlights the actual educational needs of this population and identifies often-overlooked topics, providing a foundation for developing tailored educational materials.
Childhood sexual abuse (CSA) is a severe early-life trauma with well-established psychiatric sequelae. Prior studies have been limited by nonrepresentative samples, broad adversity measures, and a lack of dose-response characterization or formal effect modification testing in contemporary US populations. To examine the association between prior CSA and adult loneliness and whether this association varies by sex, race and ethnicity, and age group. This cross-sectional study used data on 53 444 adults from the 2023-2024 Behavioral Risk Factor Surveillance System, a nationally representative survey of US adults. CSA was ascertained through retrospective self-report. Self-reported history of CSA (never, once, or more than once). The main outcome was ordinal loneliness frequency (never, rarely, sometimes, usually, or always) estimated via survey-weighted multinomial logistic regression, adjusted for age, sex, race and ethnicity, marital status, educational level, employment, language, general health status, and tobacco use. Effect modification by sex, race and ethnicity, and age was formally tested. Analyses incorporated complex survey weights and inverse probability weighting to reduce confounding by measured covariates. The analytic sample comprised 53 444 US adults (mean [SD] age, 56.8 [17.7] years; 55.1% female). CSA was associated with a clear dose-response gradient. The probability of never feeling lonely decreased from 40.9% (95% CI, 40.1%-41.8%) among unexposed adults to 23.1% (95% CI, 20.0%-26.3%) after repeated exposure. The probability of always feeling lonely increased from 2.1% (95% CI, 1.8%-2.3%) to 5.3% (95% CI, 3.9%-6.6%)-a 2.5-fold increase (adjusted OR, 4.48; 95% CI, 3.05-5.91; P < .001). In a binary analysis, any CSA was associated with an absolute risk difference of 18.1 percentage points (95% CI, 15.5-20.7 percentage points; P < .001), number needed to harm of 6, and population attributable fraction of 7.5% (95% CI, 6.4%-8.5%), suggesting approximately 6.2 million US adult loneliness cases may be associated with CSA. The dose-response pattern was consistent across sex, racial and ethnic groups, and age groups. In this cross-sectional study of 53 444 US adults, CSA was associated with higher adjusted probabilities of adult loneliness in a graded dose-response pattern. This finding underscores the importance of trauma-informed strategies to address long-term psychosocial vulnerability among adults who were exposed to CSA.
To describe the data analytic strategy used to develop new quality-of-life measures for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL). Several item pools were created and administered to a large sample of individuals with a history of major extremity injury or limb loss (n = 603). Item analyses adhered to modern psychometric standards (e.g., PROMIS®, COSMIN) and aimed to create several item response theory-based (IRT) item banks based on the graded response model. Items were removed iteratively based on pre-defined criteria and IRT model assumptions were met for the final item pools (monotonicity, unidimensionality, local item independence); differential item functioning, test-retest reliability, and convergent validity were then evaluated. Computer adaptive test and short-form versions of final item banks were created and examined using data simulation. Item analyses led to the development of 8 new item banks and two fixed-length scales. These 10 new LIMB-QOL measures demonstrated initial evidence of reliability (α range = 0.94-0.98, test-retest ICC range: 0.68-0.91) and convergent validity for use in individuals with a history of major extremity injury or limb loss, and abbreviated formats of the full item banks exhibited comparable performance. The new LIMB-QOL measures demonstrated strong psychometric properties and can be used to collect patient-reported assessments of quality of life following major extremity injury and limb loss. The analytic strategy described herein exemplifies how the PROMIS methodology can be utilized to design IRT-based patient-reported outcome measures to fill measurement gaps for specific clinical populations.
To assess the perceived burden and quality of life (QoL) of family caregivers (FCs) of chronically ill older adults in Abha, Saudi Arabia; explore the relationship between burden and QoL; and identify key sociodemographic, clinical and caregiving-related predictors of both outcomes. A cross-sectional study. Primary healthcare centres in Abha city, the capital of the Asir region in southwestern Saudi Arabia. A total of 400 FCs of community-dwelling older adults with chronic diseases, selected using a multistage probability sampling technique. Data were collected using validated Arabic versions of the Zarit Burden Interview-22 and the Adult Carer Quality of Life questionnaire. Descriptive statistics, correlation analysis and multivariate regression models were used to identify factors influencing caregiver burden and QoL. Most caregivers were young, female, unemployed and cared for dependent older adults. More than half (59.5%) reported mild burden, 22.8% moderate and 1% severe. Regarding QoL, 47.8% had low and 52.2% moderate levels. Caregiver burden was significantly associated with poorer QoL (χ², p<0.05). Predictors of higher burden included caregiver illness, co-residency, longer caregiving duration, higher recipient dependency and being a first-degree relative. Sufficient income, being single, shorter caregiving duration and access to home care services predicted better QoL. Multivariate analysis indicated that access to home healthcare services reduced burden and improved QoL. Caring for chronically ill older adults in Abha imposes a considerable psychosocial and physical burden on FCs, adversely affecting their QoL. The findings underscore the urgent need for integrated caregiver support programmes, including home healthcare services, financial and educational assistance and mental health resources, to promote caregiver well-being and sustain informal elder care within Saudi Arabia's ageing society.
Social media has become a crucial tool for interpersonal communication among nurses worldwide, including in South Korea. While offering various opportunities, such as education and networking, it also entails risks regarding professional ethics and boundaries. However, research measuring digital professionalism in the Korean context is inadequate. Thus, a customised, nurse-specific instrument is required to support effective evaluation, educational initiatives and policy formulation. This study aimed to translate, culturally adapt and psychometrically validate the Korean version of the Digital Professionalism Self-Assessment Instrument (K-DP-SAI) for nurses. This study followed established guidelines for translation and cross-cultural adaptation, including forward and backward translation, synthesis, expert panel review and pilot testing. Exploratory and confirmatory factor analyses were conducted with 308 nurses each, and known-group validity was also performed. Internal consistency was assessed using Cronbach's alpha and McDonald's omega and test-retest reliability was examined using intraclass correlation coefficients. The K-DP-SAI comprises 14 items across three factors, including 'upholding public trust through professional accountability', 'personal information protection' and 'maintenance of professional boundaries'. The scale demonstrated satisfactory content, convergent and discriminant validity with acceptable model fit indices (x2/df = 2.603, GFI = 0.916, TLI = 0.918, CFI = 0.933, RMSEA = 0.072 and SRMR = 0.054) and also demonstrated sensitivity in discriminating between groups based on their perceived need for related education (t = 2.135, p < 0.05). Internal consistency (Cronbach's alpha = 0.88 and McDonald's omega = 0.88) and test-retest reliability (ICC = 0.68) met the established criteria. The K-DP-SAI is a valid and reliable instrument for assessing nurses' digital professionalism in South Korea. As an organisational safeguard, it enables managers to identify vulnerable groups and implement targeted, evidence-based education beyond simple restriction. Ultimately, K-DP-SAI supports the nurses' professional integrity in digital spaces by shifting management toward practical guidance.