Search Results (1,860)

Intergenerational trauma significantly affects the health and mental health of African American families, particularly women whose lives are shaped by systemic inequities and historical oppression. This scoping review examines how trauma and resilience are transmitted across generations in African American communities, with a focus on dyads such as mother–child and mother–daughter relationships and a conceptual grandmother–mother–daughter triad. The review aims to identify mechanisms of trauma transmission and resilience and to inform culturally responsive, multigenerational interventions. Peer-reviewed studies published between 2012 and 2025 were identified that included African American caregivers and children and addressed biological, psychological, social, cultural, and resilience dimensions of intergenerational processes. Data were synthesized using a dimensional conceptual analysis approach. Findings indicate that intergenerational trauma is perpetuated through chronic stress and discrimination, maternal mental health challenges, family structure and caregiving strain, and cultural narratives about strength and self-reliance. At the same time, resilience is transmitted through sensitive caregiving, spirituality and faith, social and kin support, racial socialization, and economic survival strategies that draw on cultural and historical knowledge. These results underscore the importance of addressing intergenerational trauma holistically by integrating dyadic evidence within a broader conceptual triadic framework. Culturally responsive, multigenerational interventions that leverage family and community strengths and make space for emotional vulnerability are essential for interrupting cycles of trauma and fostering healing within African American families. Full article

This mixed methods study explored perspectives from volunteer coaches and team parents involved in one sport-based youth development program, Junior Giants. The purpose was to (a) compare multiple perspectives on program impact and (b) investigate processes behind program impact and intentions to return. The sample (N = 11,638) included 1541 volunteer coaches, 861 team parents, and 9236 caregivers who completed an online survey assessing perceptions of players’ character development, antibullying, and league organization. Coaches and team parents also responded quantitatively and qualitatively about attending the initial training, use of practice plans, and intentions to return. Coaches reported significantly higher perceptions of participant change in character development and antibullying compared to caregivers (effect sizes were small), and team parents’ perceptions were not significantly different from coaches or caregivers. Perceptions of program outcomes did not differ by sport type (baseball v. softball), binary gender, age, or years in Junior Giants. For process variables, coaches were significantly more likely to attend the training and use the practice plans than team parents (small effects). Several themes emerged from open-ended questions, including not attending the initial team meeting due to schedule conflicts or signing up late to coach, not using practice plans due to limited time or needing modifications, and not intending to return due to child aging out or time commitment. Results suggest Junior Giants is perceived to have a positive impact and offer advice for supporting volunteers in sport-based youth development programs. Full article

Background/Objectives: Evidence-based recommendations are vital in healthcare to standardize care, reduce variability, and improve patient outcomes. In children, anaphylaxis, allergy to antibiotics, and hymenoptera venom allergy are among the commonest reasons for allergological evaluation. This work was intended to optimize the prescriptions for allergological evaluation and for the related diagnostic tests with the aim of improving the management of children with allergic diseases and promoting resource efficiency. Methods: A systematic literature review of the literature was performed to formulate recommendations on the diagnostic management of children with anaphylaxis, drug allergy, and hymenoptera venom allergy. Results: Effective management of anaphylaxis involves rapid assessment and specialist follow-up to identify triggers, prevent recurrence, and ensure patients and caregivers are educated and equipped with an adrenaline auto-injector. Integrating skin testing, specific serological assays, and oral provocation tests into the diagnostic process for children with suspected beta-lactam allergy enhances diagnostic accuracy and minimizes unnecessary avoidance of first-line antibiotics. Children and adolescents with systemic reactions to hymenopteran stings should be referred to an allergy specialist for diagnosis, risk assessment, management education, and adrenaline prescription. Conclusions: These recommendations may enhance care quality, minimize inappropriate prescriptions, and support standardized methods of diagnosis of allergological diseases in children. Full article

Background/Objectives: In 2023, the United States Congress amended Section 13 of the National School Lunch Act to allow non-congregate meal service as an option within the Summer Food Service Program in rural areas, creating “SUN Meals To-Go.” The purpose of this qualitative study was to explore caregivers’ perceptions of USDA rural non-congregate summer meal programs in California during the summer of 2024. Methods: This was a cross-sectional, qualitative study using an electronic 20-item survey instrument that was available in English and Spanish. Five school foodservice directors in California shared and/or posted at meal pick-up sites a flyer with a QR code leading caregivers to the survey instrument. A conventional content analysis was conducted with the open-ended responses and descriptive statistics were calculated for close-ended items. Results: Caregivers (n = 827) were primarily married (70.5%) and Hispanic/Latino (54.3%) women (85.5%). They (55%) reported using the 2024 summer meal program “most times” or “every time” it was available. Three themes were constructed through qualitative content analysis: (1) Family support and resource relief, (2) Navigating program accessibility and logistics, and (3) Nourishment and practicality: Reflections on food quality, nutrition, and sustainability. Conclusions: Caregivers highlighted that the program supported their families and provided resource relief. They indicated that accessibility and logistics were effective, provided ideas for fine-tuning the delivery of the program, described this program as supporting their children’s nutrition. Full article

Background/Objectives: Neurological diseases are a major cause of long-term disability and dependence. In Poland, as in many countries, informal caregivers provide most long-term care for individuals with chronic and progressive neurological conditions. Although essential, this role is associated with substantial physical, psychological, and social burden. This study aimed to assess the scope and nature of support provided by caregivers to people with neurological diseases and to identify factors associated with differences in support and caregiver burden. Methods: A cross-sectional quantitative study was conducted using a CAWI survey. The sample included 104 informal caregivers of adults with various neurological conditions. An author-designed questionnaire and the “Actually Provided Support” subscale of the Berlin Social Support Scales (BSSS) were used. Nonparametric statistical tests were applied (p < 0.05). Results: Caregivers provided a high level of support, particularly emotional and instrumental support, while informational support was less intensive. Women more frequently reported high emotional and instrumental support. Higher buffering–protective support was more common among caregivers aged over 45 years. The most frequently reported difficulties were psychological fatigue (70.9%) and physical fatigue (60.2%), indicating a substantial caregiving burden. Key barriers included limited access to reimbursed healthcare services and the lack of temporary replacement in caregiving. Caregivers most often indicated the need for respite care and better access to information and education. Conclusions: Informal caregivers play a crucial role in the daily functioning of people with neurological diseases, despite high burden and insufficient systemic support. Expanding respite care, improving access to information, and better coordination of healthcare services are urgently needed. Full article

Background: Parents caring for preterm infants during hospital admission have unique needs. How these are addressed plays an important role in parents’ ability to cope with caregiving responsibilities. Educational programmes have proven beneficial to parents during their infant’s stay in the neonatal intensive care unit (NICU), for both parental and neonatal outcomes. Key components of parenting education during the NICU stay have been described; however, less is known about our understanding of parents’ educational needs, specifically in the South African context. Objectives: To explore parental needs and perceptions regarding a parenting education intervention provided to them while in the NICU, with a focus on programme content, structure, and mode of delivery. Methods: Three focus group discussions were conducted with mothers of preterm infants admitted to the NICU of a referral hospital in the North West province, South Africa. Inclusion criteria comprised parents of infants born in the hospital, singletons or multiples, with a gestational age below 37 weeks, and expected to stay in the NICU for at least 7 days. Discussions centred on mothers’ perceived needs regarding parenting education based on their experiences during their baby’s NICU admission. Results: Twenty-five mothers of singletons or multiples born before 37 weeks of gestation participated in the study. Three main themes were identified: (1) preference for content topics to include basic infant care, infant health and behaviours, and post-discharge related information; (2) education programme structure, which included instructional approaches and training logistics; and (3) support needs, including intrapersonal motivators, communication, and psychosocial and physical support. Conclusions: Participants recognised educational content needs that align with existing literature. However, they also emphasised the importance of addressing basic physical and emotional needs while receiving educational content, ensuring that parents feel empowered and capable of engaging with the information. Full article

Background/Objectives: Within Paediatric Palliative Care (PPC), motherhood in the context of severe cognitive impairment is shaped by unique emotional, relational, and identity-related challenges. Traditional understandings of maternal identity are strained when verbal communication and typical developmental milestones are absent. Although caregiving in PPC has been widely studied, the subjective and symbolic dimensions of motherhood in this setting have received far less attention. This study sought to explore how mothers construct, interpret, and make sense of their maternal identity while caring for a child with severe cognitive impairment in a PPC context, and to underscore the clinical relevance of these identity-related processes. Methods: A qualitative study was conducted involving nine mothers of children receiving paediatric palliative care services at a regional centre in Italy. Participants engaged in three online focus groups, totalling 270 min. Reflexive thematic analysis was employed to interpret the transcribed data, using ATLAS.ti software, version 25.0.1 ATLAS.ti Scientific Software Development GmbH, Berlin, Germany, for support. Member reflections were incorporated to validate the findings. Results: Three interconnected themes emerged from the reflexive thematic analysis. First, mothers described the development of a fusion-like, enmeshed mother–child relationship, characterised by embodied attunement, specialised interpretive expertise, and lifelong care dependency. Second, mothers detailed the construction of their maternal role, shaped by emotional labour, identity negotiation, sacrifice, loneliness, and peer support, alongside the construction of the child’s role, in which children were perceived as unique, symbolically meaningful beings whose social presence and limited reciprocity shaped maternal identity. Third, mothers articulated a search for meaning that sustained them throughout the caregiving journey, reframing their experience within a broader existential and relational perspective. Conclusions: Maternal caregiving in PPC encompasses distinct emotional, relational, and symbolic dimensions that extend beyond conventional understandings of motherhood. Grasping these identity-related dynamics has direct clinical relevance: it enables more attuned communication, strengthens the therapeutic alliance, and supports personalised, meaning-oriented care. These insights highlight the need for tailored interventions and further qualitative research to inform health care professionals and interdisciplinary practice. Full article

Background: Amyotrophic lateral sclerosis (ALS) progressively impairs motor function, compromising speech and limiting communication. Augmentative and alternative communication (AAC) is essential to maintain autonomy, social participation, and quality of life for people with ALS (PALS). This review maps technological developments in AAC, from low-tech tools to advanced brain–computer interface (BCI) systems. Methods: We conducted a scoping review following the PRISMA extension for scoping reviews. PubMed, Web of Science, SciELO, MEDLINE, and CINAHL were screened for studies published up to 31 August 2025. Peer-reviewed RCT, cohort, cross-sectional, and conference papers were included. Single-case studies of invasive BCI technology for ALS were also considered. Methodological quality was evaluated using JBI Critical Appraisal Tools. Results: Thirty-seven studies met inclusion criteria. High-tech AAC—particularly eye-tracking systems and non-invasive BCIs—were most frequently studied. Eye tracking showed high usability but was limited by fatigue, calibration demands, and ocular impairments. EMG- and EOG-based systems demonstrated promising accuracy and resilience to environmental factors, though evidence remains limited. Invasive BCIs showed the highest performance in late-stage ALS and locked-in syndrome, but with small samples and uncertain long-term feasibility. No studies focused exclusively on low-tech AAC interventions. Conclusions: AAC technologies, especially BCIs, EMG and eye-tracking systems, show promise in supporting autonomy in PALS. Implementation gaps persist, including limited attention to caregiver burden, healthcare provider training, and the real-world use of low-tech and hybrid AAC. Further research is needed to ensure that communication solutions are timely, accessible, and effective, and that they are tailored to functional status, daily needs, social participation, and interaction with the environment. Full article

The adult child–parent relationship is a key source of emotional support across adulthood and older age. This study takes a dyadic, attachment-based perspective to examine how (dis)similarities in attachment orientations between older parents and adult children relate to the emotional support they provide each other. A total of 104 adult child–parent dyads (M parents’ age = 67.85; M adult children’s age = 36.18) participated. Structural Equation Modeling (SEM) and Response Surface Analysis (RSA) were used to assess how dyadic (dis)similarities in attachment anxiety and avoidance are associated with own support provision. Both parents and adult children provided greater emotional support when their attachment insecurity was at low levels. Support also increased when the partner showed higher insecurity but differed across generations: parents offered more support when the child’s anxiety or avoidance exceeded their own, even at own high levels of insecurity, whereas children supported insecure parents only when their own insecurity was relatively low. Attachment-based processes in the adult child–parent bond serve as a source of emotional connection, operating differently across generations: parents can adapt caregiving to meet children’s needs, while children’s support is more constrained by their own attachment insecurity. Full article

Objectives. To integrate clinical and economic evidence on the main non-pharmacological interventions aimed to reduce the burden of caregivers of people with dementia, with specific attention to stated preference measures (SPM), Willingness-to-Pay (WTP) and Willingness-to-Accept (WTA), alongside other cost-effectiveness indicators (ICER, QALY). Methods. A systematic review was conducted on randomized and quasi-experimental evaluations, economic models, and preference studies concerning psychoeducational/coping interventions, activity-centered/occupational programs (TAP), technological solutions and tele-support, and goal-oriented cognitive rehabilitation (CR). For each study, the following indexes were extracted: design, sample size, psychological outcomes (anxiety/depression, burden, engagement), utility per QALY, costs per perspective (the health–social and the broader societal perspectives), ICER, WTP/WTA, and sensitivity results. Results. Psychoeducational programs and CR show consistent benefits on distress, anxiety/depression, and caregiver quality of life; TAP reduces caregiver burden and patient behavioral problems, with favorable signs of cost–effectiveness; results on the effects of technologies are heterogeneous, but online modules with telephone support improve psychological morbidity. QALY improvement is generally modest, but the probability of cost-effectiveness remains high when costs do not differ significantly from treatment as usual, or when, from a societal perspective, the unpaid caregiving time of the caregiver is valued. Preference studies indicate positive WTP for additional hours of home care, health–social integration, and facilitated groups; evidence on WTA is scarcer and methodologically variable. Conclusions. Short, structured interventions with a human support component offer good value-for-money; the adoption of societal perspectives and the systematic use of WTP/WTA can better capture the value perceived by caregivers. Heterogeneity issues persist. Full article

People with disabilities worldwide encounter barriers to accessing care and support systems. Existing care frameworks often focus on supporting caregivers, operating under the assumption that people with disabilities are largely dependant. However, under a human rights framework it is fundamental to recognise the role that people play, both providing and receiving care, and if care needs are adequately met. This study collects and analyses data from 1001 individuals with disabilities in Bogotá, Colombia, to assess the extent of unsatisfied care needs among this group. We identified individual and household characteristics that are associated with unsatisfied care needs using a multinomial probit and a probit model. The result revealed that 58.7% of participants received an insufficient amount of care, and 7.6% did not receive care at all despite needing it. In total, 66.3% of respondents had unsatisfied care needs. Adults with disabilities experiencing unsatisfied care needs were more likely to be older, male, experiencing functional limitations in daily activities, unemployed, or having lower educational attainment. Notably, 35.7% of respondents also provided care to household members—including children, older adults, individuals with disabilities, and those who were ill or injured. Findings highlight the need for Bogotá’s care system to recognise people with disabilities as both care recipients and caregivers, and to tailor support mechanisms to meet their diverse needs. Full article

Dementia is a progressive condition that affects cognition, communication, mobility, and independence, posing growing challenges for individuals, caregivers, and healthcare systems. While traditional care models often focus on symptom management in later stages, emerging artificial intelligence (AI) technologies offer new opportunities for proactive and personalized support across the dementia trajectory. This concept paper presents the Assistive Intelligence framework, which aligns AI-powered interventions with each stage of dementia: preclinical, mild, moderate, and severe. These are mapped across four core domains: cognition, mental health, physical health and independence, and caregiver support. We illustrate how AI applications, including generative AI, natural language processing, and sensor-based monitoring, can enable early detection, cognitive stimulation, emotional support, safe daily functioning, and reduced caregiver burden. The paper also addresses critical implementation considerations such as interoperability, usability, and scalability, and examines ethical challenges related to privacy, fairness, and explainability. We propose a research and innovation roadmap to guide the responsible development, validation, and dissemination of AI technologies that are adaptive, inclusive, and centered on individual well-being. By advancing this framework, we aim to promote equitable and person-centered dementia care that evolves with individuals’ changing needs. Full article

Background/Objectives: Inclusive nutrition services and data on children with disabilities living in low- and middle-income countries remain limited. We estimated the prevalence of undernutrition and described feeding practices and difficulties among children with disabilities ages birth to 10 years at a rehabilitation hospital in Uganda and identified barriers and opportunities for inclusive nutrition. Methods: This cross-sectional study enrolled 428 children. Data included demographics, weight, height, mid–upper arm circumference (MUAC), hemoglobin levels, risk for feeding difficulties, caregiver-reported feeding practices, and functional difficulties complemented by 32 caregiver and stakeholder interviews. Undernutrition was defined using WHO z-scores, MUAC, and anemia cutoffs. Associations were examined using Pearson’s chi-squared tests and adjusted odds ratios from logistic regression. Results: Over half of participants were boys (56.1%) and 65.9% were <24 months old. Common conditions included cleft lip/palate (55.4%) and cerebral palsy (38.6%). Undernutrition was prevalent: 45.2% were underweight, 38.3% stunted, 16.1% wasted (by MUAC), and 39.5% anemic. Being at risk for feeding difficulties (67.2% of children) increased the odds of underweight [AOR = 2.28 (1.23–4.24)], stunting [2.46 (1.26–4.79)], and wasting [2.43 (1.10–5.35)] after adjusting for covariates. Bottle-feeding increased the odds of stunting [3.09 (1.24–7.70)] in infants with cleft lip/palate < 12 months old. Poor access to services, food insecurity, and feeding challenges were key barriers to optimal nutrition. Most caregivers reported using practices that support responsive feeding. Conclusions: Reported barriers to services and high levels of undernutrition, strongly linked to feeding difficulties, underscore the need for targeted feeding interventions and better access to inclusive nutrition services in Uganda. Full article

Background/Objectives: Family members are the principal providers of home-based care for migrant older adults. Linguistic, cultural, and structural barriers within health systems exacerbate the caregiver burden across emotional, physical and financial domains. Although home healthcare services may alleviate this burden, variability in access, cultural safety, and care coordination can also intensify it. This scoping review maps the evidence on the burden experienced by family caregivers who deliver home-based healthcare to migrant older adults and examines how these arrangements affect caregivers’ health and well-being. It synthesizes the literature on facilitators and barriers—including access, cultural-linguistic fit, coordination with formal services, and legal/immigration constraints—and distills implications for policy and practice to strengthen equitable, culturally responsive home care. Method: The Joanna Briggs Institute (JBI) scoping review framework was used to conduct the review. A comprehensive search was performed across six databases (CINAHL, Scopus, Web of Science, PsycINFO, MEDLINE and Sociological Abstracts) for articles published between 2000 and 2025. Studies were selected based on predefined inclusion criteria focusing on the family caregiver burden in providing home healthcare for migrant older adults. Data extraction and thematic analysis were conducted to identify key themes. Results: The review identified 20 studies across various geographical regions, highlighting four key themes: (1) Multidimensional Caregiver Burden, (2) The Influence of Gender, Family Hierarchy, and Migratory Trajectories on Caregiving, (3) Limited Access to Formal and Culturally Appropriate Support, and (4) Health Outcomes, Coping, and the Need for Community-Based Solutions. Conclusions: System-level reforms are required to advance equity in home healthcare for aging migrants. Priorities include establishing accountable cultural-safety training for providers; expanding multilingual access across intake, assessment, and follow-up; and formally recognizing and resourcing family caregivers (e.g., navigation support, respite, training, and financial relief). Investment in community-driven programs, frameworks and targeted outreach—co-designed with migrant communities—can mitigate isolation and improve uptake. While home healthcare is pivotal, structural inequities and cultural barriers continue to constrain equitable access. Addressing these gaps demands coordinated policy action, enhanced provider preparation, and culturally responsive care models. Future research should evaluate innovative frameworks that integrate community partnerships and culturally responsive practices to reduce the caregiver burden and improve outcomes for migrant families. Full article

Background/Objectives: The Rett Syndrome Behavior Questionnaire (RSBQ) is a widely used caregiver-reported instrument for assessing behavioral and neurological features of Rett syndrome (RTT). However, a validated Korean version has not been available. This study aimed to translate the RSBQ into Korean (K-RSBQ) and to evaluate its psychometric properties in a Korean RTT population. Methods: The RSBQ was translated and back-translated using standardized procedures and refined through a Delphi process. Primary caregivers of individuals with clinically diagnosed RTT completed an online survey including the K-RSBQ and the Childhood Autism Rating Scale (CARS). Test–retest reliability was assessed in a subset of caregivers who completed the questionnaire twice within one week, and inter-rater reliability was evaluated when an additional caregiver was available. Results: Sixty-six primary caregivers participated. The K-RSBQ demonstrated high internal consistency for the total score (Cronbach’s α = 0.912) and moderate-to-high consistency across most subscales. Test–retest reliability for the total score was moderate (weighted κ = 0.594), while inter-rater reliability between primary and secondary caregivers was generally low. The hand behavior subscale showed low and non-significant test–retest reliability. The K-RSBQ total score exhibited a low-to-moderate correlation with the CARS total score, and the general mood subscale showed a moderate correlation with the CARS emotional response item. Caregivers reported minimal difficulty in understanding the questionnaire items. Conclusions: The K-RSBQ demonstrates acceptable internal consistency and test–retest reliability when administered to primary caregivers, with preliminary evidence supporting its construct validity. Although limitations exist regarding criterion validation and inter-rater agreement, the K-RSBQ represents a feasible and culturally adapted tool for assessing RTT-related behavioral features in Korean clinical and research settings. Full article