Search Results (1,428)

Background/Objectives: Inborn errors of immunity (IEI) are rare and complex pediatric disorders that create significant information gaps for families and non-specialist healthcare professionals. Large language models (LLMs) such as ChatGPT are increasingly used as on-demand health information resources; however, evidence on their performance in rare pediatric diseases remains limited. This study aimed to evaluate the reliability, quality, readability, understandability, reproducibility, and safety-related concerns of ChatGPT-4o responses to frequently searched questions about pediatric IEI posed by healthcare professionals and patients/caregivers. Methods: This cross-sectional evaluation used the publicly accessible ChatGPT-4o interface to generate responses to 20 frequently searched questions about pediatric IEI, equally distributed between healthcare professional (n = 10) and patient/caregiver queries (n = 10). Three pediatric allergy-immunology specialists independently evaluated response quality using the modified DISCERN (mDISCERN) and Global Quality Scale (GQS) tools, supplemented by a structured expert-based assessment of misinformation, safety-related concerns, suspected factual issues, missing disclaimers, and clinically meaningful inter-iteration inconsistency. Text readability was assessed using four validated indices (ARI, FRES, FKGL, GFR), comprehensibility using the Patient Education Materials Assessment Tool (PEMAT), and reproducibility using natural language processing methods. Results: ChatGPT-4o demonstrated strong overall performance, with median mDISCERN and GQS scores of 4 (IQR: 3–5) for both query types. Readability scores substantially exceeded recommended thresholds, with FKGL scores of 12.96 ± 0.69 and 10.83 ± 0.67 for professional and patient/caregiver queries, respectively. Mean PEMAT understandability scores were 71.80 ± 5.75% for professional queries and 80.80 ± 4.73% for patient/caregiver queries (p = 0.001). Reproducibility was high, with semantic similarity rates of 86.10 ± 3.84% and 87.30 ± 3.68%, respectively. Suspected factual issues were identified in 4 of 20 responses (20%), safety-related concerns in 3 (15%), clinically meaningful inter-iteration inconsistencies in 3 (15%), and missing medical disclaimers in all 20 responses (100%). Conclusions: ChatGPT-4o showed strong performance across validated quality metrics for pediatric IEI information support; however, its high reading level, universal absence of medical disclaimers, and occasional clinically meaningful inconsistencies limit its suitability as a standalone source for clinically sensitive guidance. These findings underscore the need for AI-driven patient education tools with improved readability, adaptive complexity adjustment, and safety-oriented communication. Full article

Background/Objectives: People aged 65 years and older who live alone and have limited functional abilities need support in many circumstances and for a variety of activities. This study was conducted to explore the available formal and informal help for seniors, using findings from the “Inclusive Ageing in Place” (IN-AGE) study. Methods: This descriptive study was carried out in 2019 in three Italian regions, i.e., Lombardy in the north, Marche in the centre, and Calabria in the south, and involved 120 older people who lived at home, either alone or with a personal/private care assistant (PCA). Using a mixed-methods approach revealed both qualitative (thematic/content analysis of narratives) and quantitative (quantifications of statements) results. Results: This study identified several needs of seniors in different circumstances concerning basic and instrumental activities of daily living (ADL and IADL), health, and mobility in/outside the home. The seniors reported that support was provided primarily by their families, followed by friends and neighbours. Public home services were considered insufficient. The participants also reported using mobility aids and instances of self-sufficiency. Conclusions: These results highlight the need to improve support services for frail seniors and to better integrate formal and informal caregiving to facilitate ageing in place and promote the well-being of older people. Adequate interventions should be implemented for both older people and their family caregivers, who play a central role in care. Full article

Family caregivers play a critical role in supporting patients with advanced cancer, yet their quality of life (QoL) is often adversely affected and remains insufficiently addressed in routine care. Although family relationships have been widely recognized as important in the caregiving context, their specific domains have rarely been examined in relation to caregiver outcomes. This study aimed to examine the associations between distinct domains of family relationships and caregiver QoL. A total of 170 caregivers were recruited from nine hospice units in Korea between September 2021 and March 2024. for this multicenter study. The Family Relationship Assessment Scale (FRAS) and the Korean version of the Caregiver QOL Index-Cancer (CQOLC-K) were used to assess family relationships and caregiver QoL, respectively. Multivariate regression analyses were performed to evaluate the associations between specific domains of family relationships and caregiver QoL. Family relationship domains were differentially associated with caregiver QoL. Overall family relationship scores were positively associated with QoL (β = 0.30, p = 0.004), while family conflict showed the strongest negative association (β = −1.03, p = 0.001). In contrast, family support was associated with better positive adaptation (β = 0.24, p = 0.027). The associations between family relationships and QoL were more pronounced among vulnerable caregivers, including those who were younger, unemployed, had lower social support or resilience, or were dissatisfied with care. Family relationships, particularly conflict and support, are important correlates of caregiver QoL. Incorporating the assessment of family relationship domains helps identify caregivers at increased risk and informs the development of more family-centered supportive approaches in palliative oncology care. Full article

Background/Objectives: Caregiver burden is a relevant dimension of the caregiving experience among informal caregivers of cancer patients and is associated with psychological, physical, and social consequences. Although several instruments are available to assess the phenomenon, there is still limited consistency in the tools used across empirical oncology studies. Methods: A systematic review was conducted according to the PRISMA 2020 statement. A literature search was carried out in PubMed, Scopus, Web of Science, CINAHL, and PsycINFO up to February 2026. Quantitative studies assessing caregiver burden using standardized instruments in informal caregivers of adult cancer patients were included. Results: Thirteen studies met the eligibility criteria. The most frequently used instruments were the Zarit Burden Interview, followed by the Caregiver Burden Inventory. Less frequently used instruments included the Caregiver Reaction Assessment and the Caregiver Burden Scale. Most included studies relied on generic caregiver burden instruments originally developed outside oncology-specific contexts. Conclusions: Considerable heterogeneity exists in the instruments used to assess caregiver burden in oncology research. Empirical studies continue to rely predominantly on generic caregiver burden scales, while oncology-specific tools appear to be underused. Greater consistency in instrument selection may improve comparability across studies and support the integration of caregiver assessment into oncology practice. Full article

Background: Family caregivers are essential partners in the outpatient care of older adults with cancer, yet the knowledge, skills, and confidence, collectively, of caregiver activation are not well characterized in Asian settings. Understanding activation can inform tailored support to sustain effective caregiving. Accordingly, this study assessed the overall activation levels among cancer caregivers in the three most common cancer diagnoses in Singapore by using the Caregiver-Patient Activation Measure (CG-PAM). Methods: A total of 103 informal caregivers of patients ≥60 years (lung, GI, or myeloma) at Singapore’s largest public cancer hospitals completed the 13-item CG-PAM, scored 0–100 and classified into four activation levels. Descriptive statistics summarized characteristics and CG-PAM responses, and logistic regression analyses assessed the degree of activation for individual demographic and other characteristics (p < 0.05). Results: Caregivers showed moderate–high activation (mean 65.9 ± 16.1) and the following levels: L1, 4.9%; L2, 23.3%; L3, 38.8%; L4, 31.1%. They strongly endorsed personal responsibility and active engagement, reporting confidence in key self-management tasks, but struggled to sustain behaviors under stress. Activation was not significantly associated with demographic factors or any other measured characteristics. Conclusions: Caregivers of older adults with cancer in Singapore included in this study showed moderate–high activation and strong self-management confidence but struggled to sustain behaviors under stress. Routine activation assessment and tailored support (education, coaching) could strengthen outpatient care. Longitudinal and interventional research, alongside follow-up interviews, is needed to identify unmet needs, existing support systems, and inform scalable, sustainable models. Full article

Background/objective: The Immunisation Agenda 2030, led by the World Health Organization, aims to ensure that people of all ages benefit from vaccination. South Africa remains committed to these goals, strengthening childhood immunisation largely through the Expanded Programme on Immunisation. However, despite progress, the number of unvaccinated and partially vaccinated children continues to rise in some urban settings. This study sought to identify barriers to childhood immunisation in selected zero-dose urban communities in Gauteng Province. Methods: A qualitative exploratory–descriptive design was used to examine factors influencing childhood immunisation. Data were collected through seven focus group discussions and fifteen key informant interviews with purposively selected caregivers, community leaders, community health workers and healthcare workers involved in routine immunisation services at public healthcare facilities across the Cities of Johannesburg, Ekurhuleni, and Tshwane. Thematic analysis was conducted using NVivo^® software. Results: The study identified multiple demand-side and supply-side barriers. Demand-side barriers included limited parental knowledge, lack of trust in the government and immunisation services, religious beliefs, migration, and perceptions of caregiver substance use. Supply-side barriers involved distance to the facility, negative healthcare worker attitudes, long queues and waiting times, and frequent vaccine stock-outs. These barriers collectively contributed to missed opportunities and decreased uptake of immunisation services. Conclusions: Childhood immunisation remains a critical and cost-effective public health intervention. The findings demonstrate the complex interplay of individual and system-level factors influencing vaccine demand, uptake and persistent zero-dose status in urban Gauteng communities. Addressing these barriers requires a comprehensive approach that strengthens community trust, improves caregiver vaccine literacy, and ensures accessible, responsive, and respectful immunisation services. Full article

Background/Objectives: Oral health promotion in early childhood depends strongly on caregivers’ preventive care at home and educational centers. The aim of this study was to investigate socioeconomic, educational, cultural, and oral health factors associated with caregivers’ decisions to decline their children’s participation in school-based oral health promotion programs. Methods: Caregivers who did not authorize their children’s participation in the project were identified through school records and contacted using available information (name, telephone number, and email address). Participants were selected through simple random sampling. Results: Among the 58 caregivers included in the study, the main reasons reported were failure to return the consent form or missing the deadline (36.2%), considering the child too young (19.0%), already receiving private dental care (13.8%), not understanding the consent form (13.8%), not having received the document (10.3%), lack of trust in the professional (3.4%), and other reasons (3.4%). Higher income was significantly associated with higher educational level (p = 0.002), increased toothbrushing frequency (p = 0.007), shorter time since the last dental visit (p < 0.001), and lower levels of embarrassment related to oral health (p < 0.001). Additionally, lower-income caregivers were more likely to seek dental care only in the presence of problems (p = 0.046), while higher-income families were more likely to report private dental care as a reason for non-authorization (p < 0.001). Conclusions: These findings associate socioeconomic and educational inequalities with adverse effects on family oral health among parents, by reducing the frequency of preventive dental examinations and daily oral hygiene practices; and among children, by limiting authorization to participate in school-based oral health promotion programs. This evidence underscores that successful promotion of children’s oral health in educational settings requires addressing social disparities while strengthening caregivers’ knowledge and motivation to support participation. Full article

Background/Objectives: The Common-Sense Model (CSM) explains the dynamic framework by which individuals understand and respond to health threats. Research utilizing the CSM highlights the importance of understanding not only patients but also informal caregivers’ cognitive schema regarding the patient’s condition, as these perceptions impact both the patient’s and the caregiver’s physical and mental health. This study examined whether informal cancer caregivers’ illness representations predict their quality of life (QoL) and whether social support moderates these relationships. Methods: A cross-sectional online survey was completed by 100 caregivers using validated measures of illness perceptions (IPQ-R), QoL (SF-36), and social support (MSPSS). Results: Regression analyses showed that perceived therapy control and emotional representations significantly predicted mental health-related QoL. Illness coherence predicted physical health-related QoL. Moderation analyses indicated that social support did not moderate relationships between illness representations and QoL. Conclusions: These findings suggest that caregivers’ cognitive and emotional interpretations of the patient’s illness play an important role in their well-being, whereas social support was not a significant moderator between illness beliefs and QoL related to physical and mental health. Full article

Background/Objectives: During the first COVID-19 lockdown, the sudden disruption of formal care services substantially increased reliance on informal caregiving. Emerging evidence suggests that increased caregiving demands may have contributed to a higher burden of mental-health-related temporary work disability; however, population-based data from occupational health systems remain limited. This study aimed to quantify and characterise, descriptively, the sociodemographic, clinical, and territorial characteristics of mental-health-related temporary work disability among workers with informal caregiving responsibilities in Spain during the first COVID-19 lockdown, and to descriptively examine differences between episodes occurring among workers with and without caregiving responsibilities. Methods: A retrospective descriptive study was conducted using anonymised nationwide occupational health records from Mutua Asepeyo. All episodes of temporary work disability certified for mental and behavioural disorders (ICD-10 F00–F99) between 14 March and 21 June 2020 were analysed. Caregiver status was determined based on documented informal caregiving responsibilities recorded within the occupational disability records. Sociodemographic, occupational, clinical, and territorial variables were examined using descriptive statistics and non-parametric tests. Results: A total of 2857 caregiver-associated episodes were identified, representing 55.6% (95% CI: 54.2–57.0) of all mental-health-related temporary work disability episodes during the study period. The majority involved women (68.1%) and caregivers of older dependent adults (59.3%). Generalised anxiety disorder was the most frequent diagnosis, followed by adjustment disorders and acute stress reactions, with significant differences by sex and employment regime. Marked territorial variability was observed, as well as longer durations of temporary work disability in specific regions and among women. Conclusions: A substantial proportion of mental-health-related temporary work disability episodes during the lockdown occurred among workers with informal caregiving responsibilities, particularly women and those caring for older dependents. These findings suggest that informal caregiving may be a determinant of occupational mental health during crises. However, given the descriptive and unadjusted nature of the study, no causal inferences can be drawn. Further research is needed to understand these associations better and inform future occupational health strategies. Full article

Background/Objectives: Caregiver burden represents a critical yet under-integrated dimension of clinical care in head and neck cancer, where complex treatments and functional impairments impose substantial demands on informal caregivers. This study aimed to evaluate caregiver burden and to identify its clinical and psychological correlates among caregivers of patients with head and neck cancer. Methods: This prospective cross-sectional study included 132 caregivers. Caregiver burden was assessed using the Zarit Burden Interview, and psychological distress was evaluated using the Hamilton Depression (HAM-D) and Anxiety (HAM-A) Rating Scales. Clinical variables, including tracheostomy status, radiotherapy, disease stage, chemotherapy, reconstructive surgery, and disease recurrence, were analyzed. Univariate and multivariate analyses were performed to identify factors associated with caregiver burden. Statistical significance was defined as p < 0.05. Results: Caregiver burden was highly prevalent, with a substantial proportion of participants experiencing moderate to severe levels. In the univariate analyses, caregiver burden was significantly higher among caregivers of patients who underwent tracheostomy (p = 0.003), radiotherapy (p < 0.001), chemotherapy (p < 0.001), reconstructive surgery (p = 0.024), and those with advanced-stage disease (p < 0.001). Higher levels of depression and anxiety were significantly associated with increased caregiver burden (both p < 0.001) in the univariate analyses. In the adjusted analysis, anxiety and cohabitation status remained independently associated with caregiver burden, whereas disease stage, tracheostomy, radiotherapy, chemotherapy, reconstructive surgery, disease recurrence, and depression did not retain statistical significance. Educational level, professional caregiving support, and relationship to the patient were also not significantly associated with caregiver burden. Conclusions: Caregiver burden in head and neck cancer is primarily associated with caregiver psychological status and certain social characteristics, while clinical factors play a less prominent role after adjustment. These findings suggest the need for systematic identification of high-risk caregivers based on psychological vulnerability and caregiving demands. Integrating caregiver-focused assessment and targeted psychosocial interventions into multidisciplinary care could improve caregiver well-being and patient-related outcomes. Full article

Dementia care research has been largely shaped by Western biomedical and cognitive paradigms that privilege verbal, linear, and memory-dependent methods of data collection. While these approaches have generated valuable insights, they also reproduce epistemic and ethical limitations, particularly in cross-cultural contexts. Linguistic dominance, culturally mismatched diagnostic and care frameworks, and reliance on caregivers as proxy informants can marginalize culturally and linguistically diverse communities and risk pathologizing cultural difference as cognitive deficit. In response, this conceptual paper advances a participatory arts-based framework for cross-cultural dementia care research that centers multiple ways of knowing beyond language. Drawing on principles of co-creation, shared decision-making, reflexivity, power-sharing, and relational ethics, the framework positions people living with dementia as collaborators rather than subjects. It articulates five interrelated dimensions: (1) modes of expression (visual, embodied, sensory, and performative); (2) forms of participation (co-design, co-creation, and co-analysis); (3) cultural situatedness of meaning-making; (4) relational ethics, including ongoing assent, trust, and reciprocity; and (5) intersectionality across culture, gender, migration, class, and caregiving roles. The paper illustrates how participatory arts-based methods, such as photovoice, body mapping, collaborative art-making, and sensory storytelling, can enable culturally resonant engagement across stages of dementia while addressing power asymmetries inherent in conventional research designs. By foregrounding embodied, sensory, and culturally grounded forms of expression, this framework offers a critical reorientation of dementia care research toward more inclusive, ethical, and culturally responsive knowledge production in diverse care contexts. Full article

Background: Population ageing increases reliance on family caregivers (FCGs) for very old adults (80+). While caregiving is often studied as a source of burden, its impact on caregivers’ daily life and occupational balance remains underexplored. This study aimed to explore how caregiving responsibilities shape the daily lives, occupational balance, and support needs of FCGs, using the Stress Process Model (SPM) and the concept of Occupational Balance (OB). Methods: A qualitative study was conducted in the PACA region (France) within the SCOPE project. Seventeen semi-structured interviews were analysed using thematic content analysis, with independent double coding by two researchers. Results: Six themes were identified: caregiving role and identity, consequences, occupational patterns, needs, proposed actions, and barriers and facilitators. Caregiving generated both primary stressors (physical and emotional demands) and secondary stressors (role conflicts, financial strain, and social isolation). It also led to occupational imbalance, characterized by reduced leisure, diminished self-care, and reorganization of daily routines. Working FCGs reported greater role strain and time constraints, whereas retired FCGs emphasized informational needs and adaptation strategies. Across both groups, caregivers’ needs were rarely formally assessed. Conclusions: These findings highlight that caregiving for very old adults profoundly reshapes caregivers’ daily lives through both stress-related mechanisms and disruptions in occupational balance. They underscore the need for tailored, context-sensitive support strategies, including systematic needs assessment and more structured, individualized coordination approaches such as case management. Full article

Background/Objectives: Within a family-centered care framework, families of children with cerebral palsy (CP) rely on both informal and formal support systems to manage caregiving demands, yet the adequacy and perceived helpfulness of this support vary. This study aimed to examine the availability of different support sources for families of children with CP in Saudi Arabia, explore their perceived helpfulness, and evaluate the influence of child-, parent-, geographical-, and household-related characteristics on the level of family support helpfulness. Methods: A cross-sectional study was conducted among 223 caregivers of children diagnosed with CP across Saudi Arabia. The participants completed the Child and Family Questionnaire and the Family Support Scale (FSS), and the children were classified on the Gross Motor Function Classification System (GMFCS). Kruskal–Wallis H and Mann–Whitney U tests examined the differences in perceived support helpfulness across family, child, and household characteristics. Results: Spousal and kinship support were perceived as the most helpful sources, with families of children with bilateral spastic CP and more severe GMFCS perceiving less support. Overall, informal social support was significantly perceived as more helpful than formal support. Conclusions: Families of children with CP rely mainly on spouses and relatives for support, with lower perceived helpfulness among those facing greater caregiving demands, highlighting the need to improve the accessibility, coordination, and quality of support services. Full article

This study aimed to explore and describe the barriers to Antiretroviral Therapy (ART) adherence among children in Ekurhuleni, Gauteng. A quantitative, cross-sectional design using a survey method was employed. Convenience sampling was used to recruit 157 parents, guardians, and caregivers (PGCs) who consented to participate in the study. Data was collected using self-report questionnaires and analysed using descriptive statistics and frequency distributions. The study was not designed or statistically powered to formally test associations between variables; therefore, only descriptive statistical analyses were conducted. The reliability and validity of the instrument were ensured, and ethical clearance was obtained from the relevant authorities prior to data collection. The study was conducted in accordance with established ethical principles and in compliance with the Declaration of Helsinki. The findings revealed that there were multiple barriers to children’s adherence to ART. Approximately one-third of PGCs reported being fully informed about the importance of ART adherence, while the majority indicated being only partially informed. Missed doses emerged as a significant challenge, with a substantial proportion reporting missed medication on one or more days, and only 31.2% administering ART consistently on time. Difficulties in understanding blood test results were also reported. In addition, a notable proportion of PGCs admitted to missing clinic appointments. These findings emphasize the need for strengthened caregiver education, ongoing support, and tailored interventions directed at primary health care nurses to promote consistent ART adherence among children. Full article

Background/Objectives: The increasing use of home mechanical ventilation in Poland highlights the need for reliable and culturally appropriate tools to assess caregiver quality of life. This study aimed to translate, culturally adapt, and evaluate the initial psychometric properties of the Polish version of the Adult Carer Quality of Life Questionnaire (AC-QoL) among informal caregivers of adults receiving home mechanical ventilation. Methods: A total of 203 informal caregivers participated. The cross-cultural adaptation followed standard procedures. Confirmatory Factor Analysis was conducted to assess the factor structure. Reliability and validity were assessed using Cronbach’s alpha, McDonald’s omega, Composite Reliability, Average Variance Extracted, and correlations with caregiver burden, perceived stress, and life satisfaction. Results: Confirmatory Factor Analysis supported the original eight-factor structure, demonstrating good model fit (CFI = 0.954; TLI = 0.950; RMSEA = 0.069; SRMR = 0.078), with factor loadings ranging from 0.64 to 0.96. The Polish version of the AC-QoL demonstrated high internal consistency (Cronbach’s α = 0.95). Convergent validity was confirmed by significant correlations with caregiver burden, perceived stress, and life satisfaction. Conclusions: The Polish version of the AC-QoL demonstrates promising psychometric properties and may support clinical assessment and research in home-based long-term care. Full article