Search Results (2,009)

Background/Objective: The H-HT represents a critical vulnerability for patient–family caregiver dyads. This study developed and content-validated a middle-range nursing theory, the Adaptarte Model, designed to guide dyadic adaptation during the H-HT within the Latin American healthcare context. Methods: A sequential exploratory multimethod design was executed in two phases. Phase 1 integrated three evidence streams: clinical practice insights, a JBI-guided scoping review, and two focus groups with transitional care professionals. Qualitative content analysis and iterative consensus refined the model’s core concepts, assumptions, and propositions. Phase 2 evaluated the model’s content, structure, functionality, and projection using an international panel of eleven Latin American experts meeting strict eligibility criteria. Data were analyzed using Lawshe’s Content Validity Ratio (CVR) modified by Tristán (cutoff = 0.58) and the overall Content Validity Index (CVI). Reporting followed PRISMA-ScR and GRAMMS guidelines. Results: Expert consensus confirmed the essential model components. Item-level CVR values ranged from 0.90 to 0.99, yielding an overall CVI of 0.96, while external functionality and conceptual projection achieved an average rating of 0.88. Conclusions: The Adaptarte Model demonstrates high content validity and structural clarity, establishing a rigorous theoretical foundation for subsequent empirical research. Rather than being ready for immediate clinical implementation, it provides a structured blueprint for prospective protocol development. Systematic empirical testing and longitudinal studies are now imperative to evaluate its clinical utility and drive future healthcare transformations. The scoping review protocol was prospectively registered on the Open Science Framework (OSF) URL (accessed on 23 September 2024). Full article

Background/Objectives: Family caregivers of people with schizophrenia experience substantial psychological and practical demands associated with long-term caregiving. This study examined whether participation in a web-based digital psychoeducation program was associated with longitudinal changes in coping mechanisms among family caregivers of people with schizophrenia. Methods: A non-randomized quasi-experimental pretest–posttest control-group study was conducted at a mental health hospital in Indonesia. The final analytic sample comprised 202 family caregivers of people with schizophrenia, with 101 participants in the intervention group and 101 in the control group. The intervention comprised 10 structured web-based psychoeducation modules delivered over 10 weeks. Coping was assessed using the Brief COPE Inventory and summarized into problem-focused, emotion-focused, and avoidance coping domains. Linear mixed-effects models were used as the primary adjusted longitudinal analysis, with study group, time, group-by-time interaction, age group, and marital status included as fixed effects. Wilcoxon signed-rank and Mann–Whitney U tests were retained as complementary unadjusted analyses, while baseline-adjusted linear regression models were used as sensitivity analyses. Results: Significant group-by-time interactions were observed for problem-focused coping and emotion-focused coping. The adjusted between-group difference in change was 0.450 points (95% CI: 0.357–0.544; partial ηp² = 0.312; p < 0.001) for problem-focused coping and 0.263 points (95% CI: 0.137–0.390; partial ηp² = 0.078; p < 0.001) for emotion-focused coping. In contrast, no statistically significant differential change was observed for avoidance coping (adjusted difference in change = 0.074 points, 95% CI: −0.055 to 0.204; partial ηp² = 0.006; p = 0.259). Baseline-adjusted sensitivity analyses produced a consistent overall pattern. Conclusions: Participation in the 10-week web-based digital psychoeducation program was associated with greater longitudinal improvements in problem-focused and emotion-focused coping, but not avoidance coping. Given the non-randomized design and baseline differences between groups, these findings should be interpreted as adjusted longitudinal associations rather than definitive evidence of causal efficacy. The program may therefore represent an accessible complementary approach to supporting caregiver adaptation in long-term schizophrenia care. Full article

Background: Stroke is the third leading cause of death and a major cause of long-term disability in Malaysia, where the continuity of post-stroke care depends heavily on unpaid, untrained informal family caregivers. These caregivers face a well-documented “discharge cliff,” assuming complex medical and rehabilitative responsibilities with minimal preparation. The locally developed “CaknaStrok” mobile health (mHealth) application was designed to bridge this support gap. However, the existence of a tool does not guarantee its use; sustained adoption depends on whether caregivers find the application acceptable and are willing to integrate it into an already demanding caregiving routine. Objectives: This protocol describes a study designed to determine the levels of acceptability and willingness to use the CaknaStrok application, to examine the associated predictors (effort expectancy, ability, digital health literacy, and intervention coherence), and to test the central mediating role of acceptability through a novel Integrated Acceptability–Willingness (IAW) Framework. Methods: An explanatory sequential mixed-methods design will be conducted at the Stroke Ward of Hospital Canselor Tuanku Muhriz (HCTM), a World Stroke Organization-certified Advanced Stroke Centre. In Phase I, a target of 200 informal primary caregivers will be recruited through consecutive sampling and surveyed using a validated, bilingual (Malay/English) self-administered questionnaire that operationalises the IAW constructs through three established instruments (UTAUT, the Digital Health Literacy Instrument, and the Theoretical Framework of Acceptability). Following a standardised facilitated onboarding, caregivers use the application ad libitum for four to six weeks before completing the questionnaire. Expected Results: The study will quantify caregiver acceptability and willingness to use, identify which factors most strongly drive acceptance, and empirically test whether acceptability mediates the relationship between the predictors and willingness to use. Qualitative themes will contextualise the statistical pathways, surfacing culturally specific mechanisms of adoption that single-method designs typically miss. Ethical approval was obtained from the UKM Research Ethics Committee (JEP-2024-392). Conclusions: This study is expected to generate context-sensitive evidence to guide the design of caregiver-facing mHealth interventions and inform future multi-site implementation and policy development efforts within the Malaysian stroke-care pathway. Full article

Background/Objectives: Executive function (EF) is a foundational cognitive process associated with academic achievement and socioemotional adjustment. While average developmental trends are well documented, less is known about heterogeneity in EF trajectories during early childhood and the contextual factors associated with different developmental pathways. This study examined longitudinal trajectories of EF between ages 3 and 6 and their associations with family, child, and caregiver well-being, as well as the home environment. Methods: Data were drawn from the Chilean longitudinal cohort First Thousand Days (Mil Primeros Días [MPD]; n = 583). EF was assessed at ages 3, 5, and 6 using the Cat-Dog task. Latent profile analysis identified EF trajectories, and multinomial logistic regression examined predictors of trajectory membership. Results: Three EF trajectories were identified: Normative (54.5%), Persistently Disadvantaged (34.6%), and Advantaged Accelerating (10.8%). Home environment quality was the most consistent predictor of trajectory membership, increasing the likelihood of following the Advantaged Accelerating (RRR = 1.59) or Normative (RRR = 1.21) trajectory relative to the Persistently Disadvantaged trajectory. Early cognitive development protected against the most disadvantaged trajectory, whereas distal sociodemographic characteristics and caregiver well-being were not significant predictors of trajectory membership. Conclusions: Individual differences in EF emerge early and show divergent growth rates through age 6, with home environment quality as the strongest predictor—highlighting the value of enriching home learning environments before school entry. Full article

Parenting practices involving violent discipline are a global health concern, particularly among low-income families. While the current literature offers general prevalence data, it lacks a comprehensive global perspective evaluating how diverse sociodemographic, cultural, and historical contexts intersect within disadvantaged households. This scoping review protocol aims to map the global evidence on parenting practices related to physical and psychological violence used as disciplinary practices against children within low-income contexts. Following the JBI Manual for Evidence Synthesis and PRISMA-ScR guidelines, we will conduct a comprehensive search across databases, including MEDLINE/PubMed (via the National Library of Medicine), CINAHL (EBSCO), APA PsycINFO (APA), Embase (Elsevier), ERIC, IBECS (via the VHL) and the WHO Global Index Medicus to capture global evidence published in recent years. Studies published in English, Portuguese, and Spanish between January 2015 and June 2026 that report violent disciplinary practices by parents or caregivers of children aged 1–8 years will be included. Rayyan software will assist with study selection. Mapping these practices across diverse socioeconomic settings may clarify current research gaps and synthesize the characteristics of families globally, shifting the interpretation of violent discipline from isolated parental choices to broader understanding of its social determinants and providing a clearer baseline to support future child protection research. Full article

Background: Mothers of children with autism spectrum disorder (ASD) play a central role in coordinating multidisciplinary interventions. This study examined quality of life (QoL) among Saudi mothers of children with ASD and its associations with caregiver burden, psychological distress, financial experiences, and perceived clarity of post-diagnosis service pathways. Methods: This cross-sectional quantitative survey included an exploratory free-text component. Of 109 survey submissions, 106 contained completed core survey data. Two brief open-ended questions were presented to 60 participants; 53 provided a post-diagnosis challenge response and 46 provided a general additional comment. These responses were reviewed descriptively as supplementary contextual observations. QoL was assessed using an adapted 22-item Arabic questionnaire derived from the Arabic WHOQOL-BREF source instrument and was analysed as an adapted QoL composite rather than as standard WHOQOL-BREF domain scores. Hierarchical linear regression used a fixed complete-case sample, and regression diagnostics and sensitivity analyses were conducted. Results: Ninety-nine mothers had sufficient valid responses to calculate the adapted QoL composite (mean = 50.65, SD = 17.32, on a 0–100 metric). The hierarchical regression included 82 participants and explained 59.3% of the variance in adapted QoL (R² = 0.593; adjusted R² = 0.536). Higher caregiver burden was associated with lower adapted QoL (B = −12.94, p < 0.001), whereas higher household income (B = 3.19, p = 0.040) and greater pathway clarity (B = 6.92, p = 0.005) were associated with higher adapted QoL. Psychological distress and perceived financial burden were associated with QoL in bivariate analyses but did not show statistically significant unique associations in the multivariable model. The free-text observations referred to caregiving demands, emotional adjustment, service-navigation uncertainty, and therapy affordability; they were not treated as formal qualitative findings. Conclusions: In this cross-sectional Saudi sample, caregiver burden emerged as the factor most strongly associated with lower adapted maternal QoL, whereas higher household income and clearer post-diagnosis service pathways were associated with better QoL. These findings highlight the importance of family-centred approaches that attend to caregiving demands, affordability, and access to clear post-diagnosis guidance. Prospective research using validated or fully documented measures should examine how caregiver and service-related factors can be addressed to strengthen maternal wellbeing over time. Full article

Children with complex communication needs, including approximately one-third of children with autism, use augmentative and alternative communication (AAC) to meet their daily communication needs. AAC includes gestures, sign language, picture symbols, and computerized systems to augment or replace speech. Family support and training are essential for effective AAC implementation, but few interventions exist. We describe the iterative development of the FamTAM Intervention—an aided language modeling training and coaching intervention designed to support caregiver implementation and their school-based speech language pathologists (SLPs) preparedness to provide family coaching. We detail the iterative process, including refining the training content and delivery, expert reviews, and interviews with SLPs and caregivers. We also conducted interviews with participants to assess the clarity, feasibility, acceptability, and usability of the intervention. Our findings indicate that participants viewed the FamTAM Intervention as engaging, practical, and aligned with evidence-based AAC practices, while also identifying areas for further refinement. Full article

Objective: The objective of this study was to assess the economic family spillover effects of childhood congenital cytomegalovirus (cCMV) in the US. Methods: This cross-sectional, Web-based study collected economic and health-state utility data between August 2024 and April 2025 using three surveys targeting caregivers of children with cCMV, children with cCMV, and their siblings. Results: Respondents included 227 caregivers, 211 children with cCMV, and 173 siblings. A high economic burden on families of children with cCMV was reported, including total mean annual costs (out-of-pocket medical and personal care expenses and work- or productivity-related costs) of $83,140 and lifetime out-of-pocket home adaptation/specialized schooling costs of $4713. The mean caregiver EQ-5D-5L utility score was 0.86, which is comparable to US general-population norms. Mean Health Utilities Indexes Mark 2 and 3 scores varied within the ranges of 0.38–0.83 and 0.03–0.73, respectively, among children with cCMV. Adult siblings reported a mean EQ-5D-5L utility of 0.90. Siblings aged 4–7 and 8–17 years reported mean EQ-5D-Y-3L utilities of 0.90 and 0.92, respectively. Conclusions: This is the first study to report the family spillover effects of caring for children with cCMV in the US. The results confirm a considerable, multifaceted burden experienced by children with cCMV and their families, spanning health-state utility and economic strains. Full article

Background/Objectives: While screening, brief intervention, and referral to treatment (SBIRT) is a widely recommended evidence-based approach for early detection and intervention for alcohol and other drug (AOD) use, limited guidance exists for implementing SBIRT among hospitalized adolescents with chronic medical conditions (A-CMCs). This exploratory qualitative study examined A-CMC and caregiver perspectives on factors that may shape the acceptability, feasibility, and equitable implementation of a proposed inpatient SBIRT approach for A-CMCs. Methods: Two separate focus groups were conducted in an urban pediatric hospital in 2023 with A-CMCs aged 13–18 (n = 7), who had a history of hospitalization for their medical condition, and their caregivers (n = 6). Data were coded using thematic analysis guided by the Consolidated Framework for Implementation Research (CFIR) and the Health Equity Implementation Framework (HEIF), which captured implementation and equity-relevant determinants, respectively. Results: Although A-CMCs and caregivers recognized the importance of SBIRT within hospital settings, its acceptability hinged on the conditions of its delivery. The timing, relevance to current health needs, and modality of screening shaped an A-CMC’s willingness to disclose AOD use. Clinician communication style, including the use of a nonjudgmental tone and clear parameters for confidentiality, were also indicated as crucial for SBIRT delivery. Broadly, participants noted the significant impact that the sociopolitical context (e.g., stigma) and structural factors (e.g., financial burden) had on a family’s ability to benefit from SBIRT. Conclusions: In this exploratory qualitative study, participants identified confidentiality-forward, patient-centered workflows, and accessible follow-up supports as potentially important considerations for inpatient SBIRT among A-CMCs. These findings generate hypotheses for future co-design and implementation research across diverse pediatric inpatient settings. Full article

Māori experience inequities in the recognition of mate wareware and in access to dementia and aged care support in Aotearoa New Zealand. Less is known about how whānau experience supporting a whānau member with mate wareware, what support they find helpful, and what they consider important for mate wareware-friendly communities. This kaupapa Māori qualitative study involved a co-design phase with seven kaumātua, which informed the study questions and whānau hui guide, followed by ten in-depth whānau Māori hui involving 12 individual participants; the whānau hui formed the analytic dataset. Whānau hui data were analysed using reflexive thematic analysis. Four interconnected themes were developed: delayed recognition; whānau caregiving as collective strength alongside concentrated responsibility; sustaining wairua, identity, and belonging; and care transitions and structural barriers. Interpreted together, these themes informed a four-condition account of mana-preserving care, in which mana may be sustained or eroded through interactions among recognition and knowledge, whānau caregiving, wairua, identity and belonging, and service and institutional conditions at transitions. Where continuity fragmented, whānau frequently undertook integrative work to bridge gaps across people, places, culture, and services. The findings point to earlier mate wareware information and support through Māori-facilitated and community-based approaches, support that recognises concentrated caregiving responsibility, continuity across services and transitions, and routine practices that embed tikanga, while reducing reliance on whānau to compensate for fragmentation. Full article

Background/Objectives: Type 2 diabetes is a prevalent chronic disease that requires continuous self-management and adaptation by both individuals and their families. Health literacy is recognised as an important determinant of chronic disease management, influencing the ability to access, understand, and use health information. This study aimed to explore how family health literacy and family functioning were related to type 2 diabetes self-management across four family cases in the context of informal caregiving and to describe the changes observed following tailored family nursing interventions. Methods: An embedded mixed-methods multiple-case study was conducted with four families receiving care in a Portuguese primary healthcare unit. Qualitative data were obtained through structured family interviews guided by the Dynamic Model of Family Assessment and Intervention. Quantitative data were collected using family assessment instruments and the Diabetes Self-Care Activities Scale. Each family was analysed as an individual case, followed by cross-case comparison and integration of qualitative and quantitative findings. Results: Across the four cases, the ability to understand and translate diabetes-related information into family routines varied and was associated with differences in self-management practices. Within-case comparisons identified case-specific changes in family communication, mutual support, selected family nursing diagnoses, and some diabetes self-care behaviours. Medication adherence and blood glucose monitoring were more consistently maintained than dietary management, physical activity, and foot care. Conclusions: Family health literacy appeared to operate as a relational and context-dependent resource associated with how diabetes-related recommendations were negotiated and incorporated into daily family routines. Tailored family nursing interventions were followed by case-specific changes; however, the study design does not allow causal attribution. Full article

Background: Saudi Arabia’s healthcare system serves an increasingly diverse patient population, yet limited qualitative evidence exists regarding how pediatric nurses navigate cultural complexity in their daily practice. Understanding nurses’ day-to-day experiences of cross-cultural care is essential for strengthening culturally sensitive pediatric services. Purpose: This study explored the experiences of pediatric nurses in providing culturally sensitive care to children and their families in Riyadh, Saudi Arabia. Methods: A qualitative descriptive study was conducted in pediatric units of tertiary hospitals in Riyadh City, Saudi Arabia. Eighteen pediatric nurses participated in semi-structured interviews. Data were analyzed using Braun and Clarke’s reflexive thematic analysis, and reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Results: Four themes emerged: navigating cultural landscapes, describing nurses’ encounters with diverse cultural beliefs and health practices; communication as a bridge and a barrier, reflecting language challenges and strategies for meaningful engagement; balancing professional standards with cultural respect, highlighting the tension between evidence-based care and cultural accommodation; and the emotional labor of cross-cultural caregiving, capturing the personal toll and resilience involved in culturally diverse practice. Conclusions: Pediatric nurses engage in complex interpretive, relational, and emotional work when providing culturally sensitive care. Institutional support through cultural competence training, multilingual resources, and organizational policies is essential for enhancing culturally responsive pediatric nursing practice in diverse healthcare settings. Full article

Background: Caring for dependent children with chronic illnesses or disabilities constitutes a major public health challenge, subjecting family caregivers to prolonged physical and emotional stressors. Objectives: To quantitatively synthesize the relationship between depressive symptomatology and quality of life (QoL) in this population. Methods: A systematic review methodology with meta-analysis was conducted following PRISMA guidelines and Cochrane handbook recommendations. Databases such as PubMed, CINAHL, PsycInfo and Scopus were consulted up to February 2026. Results: Thirty-three original studies evaluating family caregivers of children under 18 years of age and reporting statistical data of association were included. The meta-analysis revealed a statistically significant moderate-to-strong negative association between depressive symptoms and overall QoL (r = −0.532; I² = 9.51%), maintaining similar values across all analyzed domains (physical, mental, social and environmental) as well as the summary components of the SF-36 questionnaire. According to the GRADE criteria, the overall certainty of evidence was rated as low to very low across all QoL domains and SF-36 components. Conclusions: This study demonstrates that heightened depressive symptomatology is substantially associated with compromised well-being among family caregivers. Full article

Background/Objectives: Self-management for adults living with intestinal stomas secondary to colorectal cancer encompasses technical ostomy care, physical symptom control, psychological adjustment, and social participation, creating demand for standardised assessment instruments to identify unmet rehabilitation needs. Definitions of generic self-care and stoma-specific self-management remain inconsistent across published literature, and psychometric indicators are incompletely reported across available measurement instruments. This review includes both stoma-specific instruments and generic self-care scales that have been validated or widely applied specifically in colorectal cancer ostomy cohorts. Following JBI scoping review methodology, this work systematically maps all published self-management assessment instruments developed for adults with intestinal stomas secondary to colorectal cancer, summarises their core measurement domains and documented psychometric properties, and identifies prevailing gaps in scale development and validation research. Methods: This scoping review was conducted in accordance with Joanna Briggs Institute methodological guidance and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) reporting checklist. Ten electronic databases were searched from inception to 31 December 2025, with supplementary manual screening of reference lists. Eligible sources were peer-reviewed English or Chinese articles focusing exclusively on adults with colorectal cancer–related intestinal stomas. Two independent researchers completed title/abstract and full-text screening, followed by data extraction using a piloted standardised form. Consistent with descriptive scoping review design, no formal methodological quality evaluation or risk-of-bias assessment was performed. Results: Thirty-two studies involving 12 self-management assessment instruments were finally included. All tools documented Cronbach’s α coefficients ranging from 0.805 to 0.977. Content validity indicators were documented for eight instruments, whereas construct validity verified via factor analysis or structural equation modelling was only available for three tools. Criterion-related validity, cross-cultural validity and responsiveness were scarcely reported across most instruments. Only three instruments were fully developed based on complete and clearly articulated theoretical frameworks. Four consistent core measurement domains were identified across scales: stoma technical care, symptom and complication management, psychological adaptation, and family-social interaction. Conclusions: Although internal consistency metrics are universally reported, comprehensive multi-faceted validity testing and responsiveness evaluation are largely absent from existing published evidence. Cross-cultural measurement invariance between original and locally adapted versions (such as the ESCA and its Chinese revised forms) has rarely been examined. Future research priorities include rigorous cross-cultural adaptation following International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) protocols, full psychometric verification of currently available instruments, and development of brief validated short forms for clinical screening. New instrument development should only be initiated if existing tools fail to capture core rehabilitation priorities identified by patients, caregivers, and clinical staff. No responsiveness metrics were identified across the 32 included colorectal cancer-specific clinical studies. The absence of relevant evidence in this literature pool does not prove that these instruments cannot detect longitudinal changes; formal responsiveness testing is required before applying these tools for long-term outcome monitoring. Full article

Background/Objectives: Preterm birth remains a significant global public health challenge, associated with increased morbidity, rehospitalisation, and long-term vulnerability. The transition from the neonatal intensive care unit (NICU) to the home environment represents a critical phase. This practice-focused narrative review synthesises current evidence on community-based post-discharge follow-up for preterm infants, with particular emphasis on the complementary contribution of community health nursing and midwifery within multidisciplinary follow-up models, endocrine-metabolic surveillance and coordinated care for medically complex infants. Methods: A narrative synthesis of review articles, clinical guidelines, and empirical studies published between 2016 and 2026 was undertaken. Searches were performed in PubMed, Scopus, and CINAHL using terms related to preterm birth, NICU discharge, community follow-up, family-centred care, community health nursing, midwifery, and metabolic disorders. Results: Community-based, family-centred follow-up programmes are associated with improved continuity of care, increased parental confidence, enhanced breastfeeding outcomes, and reduced healthcare utilisation. Community health nurses, midwives and health visitors contribute complementary expertise within multidisciplinary follow-up by coordinating continuity of care, providing clinical surveillance of growth and feeding, supporting caregiver education, facilitating early identification of complications, and ensuring timely referral. However, endocrine and metabolic vulnerabilities remain underrepresented in many follow-up models, while infants with complex healthcare needs require individualised, risk-stratified surveillance. Conclusions: Community-based, interdisciplinary, and family-centred follow-up after NICU discharge is essential to enhance the quality and safety of care for preterm infants. Integrated, risk-stratified models of follow-up that combine preventive surveillance, family education, multidisciplinary coordination, and continuity of care may facilitate earlier recognition of complications and improve long-term outcomes. Full article