Search Results (1,592)

Objectives: Diabetes Mellitus involves demanding challenges that interfere with family functioning and routines. In turn, family and social context impacts individual glycemic control. This study aims to identify this recursive interplay, the mutual influences of family systems and diabetes management. Design: Data was collected through a cross-sectional design comparing patients, aged 22–55, with and without metabolic control. Methods: Participants filled out a set of self-report measures of sociodemographic, clinical and family systems assessment. Patients (91) were also invited to describe their perception about disease management interference regarding family functioning. We first examined the extent to which family variables grouped dataset to determine if there were similarities and dissimilarities that fit with our initial diabetic groups’ classification. Results: Cluster analysis results identify a two-cluster solution validating initial classification of two groups of patients: 49 with metabolic control (MC) and 42 without metabolic control (NoMC). Independent sample tests suggested statistically significant differences between groups in family subscales- family difficulties and family communication (p < 0.05). Binary logistic regression shed light on predictors of explained variance to no metabolic control, in four models: Sociodemographic, Clinical data, SCORE-15/Congruence Scale and Eating Behavior. Furthermore, groups differ on family support, level and sources of family conflict caused by diabetes management issues. Considering only patients who co-habit with a partner for more than one year (N = 44), NoMC patients score lower on marital functioning in all categories (p < 0.05). Discussion: Family-Chronic illness interaction plays a significant role in a patient’s adherence to treatment. This study highlights the Standards of Medical Care for Diabetes, considering caregivers and family members on diabetes care. Full article

Background/Objectives: Health education plays a vital role in training health professionals and caregivers, supporting both prevention and the promotion of self-care. In this context, technology serves as a valuable ally by enabling continuous and flexible learning. Among the various domains of health education, nutrition stands out as a key element in the management of Amyotrophic Lateral Sclerosis (ALS), helping to prevent malnutrition and enhance patient well-being. Accordingly, this study aimed to evaluate the effectiveness of the teaching and learning processes within a learning pathway focused on food and nutrition in the context of ALS. Methods: This study adopted a longitudinal, quantitative design. The learning pathway, titled “Food and Nutrition in ALS,” consisted of four self-paced and self-instructional Massive Open Online Courses (MOOCs), offered through the Virtual Learning Environment of the Brazilian Health System (AVASUS). Participants included health professionals, caregivers, and patients from all five regions of Brazil. Participants had the autonomy to complete the courses in any order, with no prerequisites for enrollment. Results: Out of 14,263 participants enrolled nationwide, 182 were included in this study after signing the Informed Consent Form. Of these, 142 (78%) completed at least one course and participated in the educational intervention. A significant increase in knowledge was observed, with mean pre-test scores rising from 7.3 (SD = 1.8) to 9.6 (SD = 0.9) on the post-test across all courses (p < 0.001). Conclusions: The self-instructional, technology-mediated continuing education model proved effective in improving participants’ knowledge about nutrition in ALS. Future studies should explore knowledge retention, behavior change, and the impact of such interventions on clinical outcomes, especially in multidisciplinary care settings. Full article

Background/Objectives: Family caregivers of individuals with schizophrenia often face considerable psychological and physical strain due to the complexity of caregiving. Although psychoeducation has demonstrated benefits in alleviating this burden, its provision via telenursing remains underexplored in Saudi Arabia. This study evaluated the effect of a psychoeducational program delivered via telenursing on reducing caregiver burden. Methods: A quasi-experimental design was used with 60 caregivers from a tertiary mental health hospital in northern Saudi Arabia, who were divided equally into intervention and control groups. The intervention group participated in a structured four-week psychoeducational program via Zoom, while the control group received routine care. Caregiver burden was assessed using the Family Burden Interview Schedule (FBIS), a validated tool designed to measure the objective and subjective burden experienced by family members caring for individuals with mental illness. The FBIS was administered before and three months after the intervention. The statistical analysis included independent and paired t-tests and ANOVA. Results: The pre-intervention scores showed no significant differences, confirming baseline equivalence. The post-intervention scores showed a significant reduction in burden among the intervention group (p < 0.001), while no meaningful change occurred in the control group. Additionally, a lower burden was associated with higher education, sufficient income (i.e., the caregiver’s perception of being able to meet essential household expenses without financial strain), strong family support, and absence of caregiver illness. Conclusions: These findings suggest that psychoeducation through telenursing is an effective strategy for reducing caregiver burden and improving support accessibility, particularly for those in remote areas. Full article

Despite the extensive evidence supporting the effectiveness of cognitive stimulation, differences in results may be due to the influence of cognitive and non-cognitive aspects in people with dementia. The aim of this systematic review is to identify the most reliable variables in forecasting the effectiveness of cognitive stimulation in people with mild to moderate dementia. According to PRISMA guidelines, the research was conducted using five databases (PubMed, Scopus, Cochrane, Web of Science, APA PsycInfo), considering randomized controlled trials. A total of six studies were included. Different aspects moderating the gain resulting from cognitive intervention were collected and assessed in terms of demographic, cognitive, emotional, social, and quality of life parameters. People with dementia benefit more from cognitive intervention if they are female, if they have a low formal education level, a low baseline level of cognitive function, and lower depressive symptoms, and if caregivers actively participate in sessions. Quality of life, if low at baseline, also seems to improve following CST intervention. A deeper understanding of the cognitive and non-cognitive aspects ensuring improvement after cognitive stimulation may guide future research to develop more personalized interventions. Full article

CareCoach seeks to enhance self-efficacy in family caregivers of people living with dementia and has been feasibility tested in a multicentre randomised controlled trial. The intervention offers two face-to-face sessions with a trained coach and access to an online platform with nine modules. This paper reports findings from an embedded qualitative process evaluation assessing implementation from the implementer’s (‘coach’s’) (n = 8) perspective using individual interviews and implementer group discussions. Qualitative data were transcribed verbatim, inductively coded and analysed using Normalisation Process Theory. Implementers demonstrated (1) ‘Coherence’ by seeking to understand how CareCoach compared to current practice, highlighting the importance of supporting coaches to differentiate and identify boundaries between their new ‘coach role’ and usual practice; (2) ‘Cognitive Participation’ by reviewing training and resources to understand their role own responsibilities and facilitate delivery of coaching sessions; group supervision and peer support were also emphasised; (3) ‘Collective Action’ through interactions with carers to deliver key behavioural aspects such as goal setting, problem solving, and providing feedback; and (4) ‘Reflexive Monitoring’ by appraising the intervention to gain useful insights that could facilitate refinement of CareCoach training and delivery. This study provides a theoretically informed understanding of the implementation of CareCoach for caregivers of people living with dementia and provides recommendations to enhance training for coaches, intervention delivery and carer engagement. Full article

Background: The progression of Alzheimer’s Disease (AD) deeply affects not only the diagnosed person but also their close relatives, who are often called to take on the role of informal caregivers. This transition is frequently unplanned and emotionally complex, yet poorly understood in its deeper processual dimensions. This study aims to explore and theorize the transition experienced by a family member becoming the primary informal caregiver for a person with advanced AD. Methods: A qualitative study based on the Constructivist Grounded Theory according to Charmaz’s approach (2006) was conducted. In-depth interviews were carried out with 10 participants who had become informal caregivers for a loved one with advanced AD. Data were analyzed using initial coding, focused coding, the constant comparative method, and theoretical coding. Results: Ten caregivers (mean age 39 years, range 35–54; nine females) of patients with advanced AD participated in the study. The analysis revealed a complex, emotionally intense caregiving experience marked by sacrifice, feelings of powerlessness, identity loss, and the necessity of sharing caregiving responsibilities. A core category emerged: A Silent and Certain Willingness to Care, representing the caregivers’ deep, often unconscious commitment to prioritize the care of their loved ones above their own needs. Four interconnected phases characterized the caregiving process: (1) The Changing Daily Life—involving significant sacrifices in personal and social life; (2) Feeling Powerless—confronting the inevitable decline without means to alter the course; (3) Losing Oneself—experiencing physical and psychological exhaustion and a sense of identity loss; and (4) Sharing with Others—seeking external support to sustain caregiving. These findings highlight the evolving nature of becoming a caregiver and the enduring dedication that sustains this role despite the challenges. Conclusions: The progression of AD deeply transforms the lives of caregivers, who become co-sufferers and active participants in the disease’s management. The results underscore the urgency of designing integrative care strategies—including psychological, social, and potentially technological support—that can enhance both patient outcomes and caregiver resilience. Grounded in real-world experiences, this study contributes to the broader neurodegeneration discourse by emphasizing caregiving as a critical factor in long-term disease management and therapeutic success. Full article

Background: Family caregivers are a vital yet often under-recognized part of the healthcare system. They provide essential emotional, physical, and logistical support to individuals with illness, disability, or frailty, and their contributions improve continuity of care and reduce system strain. However, many healthcare and social service providers are not equipped to meaningfully engage caregivers as partners. In Alberta, stakeholders validated the Caregiver-Centered Care Competency Framework and identified the need for a three-tiered education model—Foundational, Advanced, and Champion—to help providers recognize, include, and support family caregivers across care settings. This paper focuses on the development and early evaluation of the Advanced Caregiver-Centered Care Education modules, designed to enhance the knowledge and skills of providers with more experience working with family caregivers. The modules emphasize how partnering with caregivers benefits not only the person receiving care but also improves provider effectiveness and supports better system outcomes. Methods: The modules were co-designed with a 154-member interdisciplinary team and grounded in the competency framework. Evaluation used the first three levels of the Kirkpatrick–Barr health workforce education model. We analyzed pre- and post-surveys from the first 50 learners in each module using paired t-tests and examined qualitative feedback and SMART goals through inductive content analysis. Results: Learners reported a high level of satisfaction with the education delivery and the knowledge and skill acquisition. Statistically significant improvements were observed in 53 of 54 pre-post items. SMART goals reflected intended practice changes across all six competency domains, indicating learners saw value in engaging caregivers as partners. Conclusions: The Advanced Caregiver-Centered Care education improved providers’ confidence, knowledge, and skills to work in partnership with family caregivers. Future research will explore whether these improvements translate into real-world practice changes and better caregiver experiences in care planning, communication, and navigation. Full article

Neurodevelopmental disorders (NDDs) significantly impact children’s health and development. They pose a substantial burden to families and the healthcare system. Challenges in early identification, accurate and timely diagnosis, and effective treatment persist due to overlapping symptoms, lack of appropriate diagnostic biomarkers, significant stigma and discrimination, and systemic barriers. Generative Artificial Intelligence (GenAI) offers promising solutions to these challenges by enhancing screening, diagnosis, personalized treatment, and research. Although GenAI is already in use in some aspects of NDD management, effective and strategic leveraging of evolving AI tools and resources will enhance early identification and screening, reduce diagnostic processing by up to 90%, and improve clinical decision support. Proper use of GenAI will ensure individualized therapy regimens with demonstrated 36% improvement in at least one objective attention measure compared to baseline and 81–84% accuracy relative to clinician-generated plans, customize learning materials, and deliver better treatment monitoring. GenAI will also accelerate NDD-specific research and innovation with significant time savings, as well as provide tailored family support systems. Finally, it will significantly reduce the mortality and morbidity associated with NDDs. This article explores the potential of GenAI in transforming NDD management and calls for policy initiatives to integrate GenAI into NDD management systems. Full article

Background/Objectives: Senior nurses in Taiwan shoulder layered responsibilities shaped by professional roles, gendered expectations, and family duty. Although Taiwan faces a persistent shortage of experienced clinical nurses, limited research has explored how long-serving nurses sustain identity and commitment across decades of caregiving. This study examines how senior staff nurses understand their journeys of becoming—and remaining—nurses within a culturally and emotionally complex landscape. Methods: Interviews were conducted between May 2019 and September 2023 in locations chosen by participants, with most sessions face-to-face and others undertaken via video conferencing during COVID-19. This narrative inquiry involved in-depth, multi-session interviews with five female senior staff nurses born in the 1970s to early 1980s. Each participant reflected on her life and career, supported by co-constructed “nursing life lines.” Thematic narrative analysis was conducted using McCormack’s five-lens framework and Riessman’s model, with ethical rigor ensured through reflexive journaling and participant validation. Results: Three overarching themes emerged: (1) inner strength and endurance, highlighting silent resilience and the ethical weight of caregiving; (2) support and responsibility in relationships, revealing the influence of family, faith, and relational duty; and (3) role navigation and professional identity, showing how nurses revisit meaning, self-understanding, and tensions across time. Participants described emotionally powerful moments, identity re-connection, and cultural values that shaped their paths. Conclusions: These narratives offer a relational and culturally embedded understanding of what it means to sustain a career in nursing. Narrative inquiry created space for reflection, meaning-making, and voice in a system where such voices are often unheard. Identity was not static—it was lived, reshaped, and held in story. Full article

Wheelchair-mounted assistive robotic manipulators can provide reach and grasp functions for power wheelchair users. This in-lab study evaluated a vision-guided shared control (VGS) system with twelve users completing two multi-step kitchen tasks: a drinking task and a popcorn making task. Using a mixed methods approach participants compared VGS and manual joystick control, providing performance metrics, qualitative insights, and lessons learned. Data collection included demographic questionnaires, the System Usability Scale (SUS), NASA Task Load Index (NASA-TLX), and exit interviews. No significant SUS differences were found between control modes, but NASA-TLX scores revealed VGS control significantly reduced workload during the drinking task and the popcorn task. VGS control reduced operation time and improved task success but was not universally preferred. Six participants preferred VGS, five preferred manual, and one had no preference. In addition, participants expressed interest in robotic arms for daily tasks and described two main operation challenges: distinguishing wrist orientation from rotation modes and managing depth perception. They also shared perspectives on how a personal robotic arm could complement caregiver support in their home. Full article

Background: Thailand is rapidly transitioning into an aging society, creating an intergenerational caregiving gap that strains existing support systems. Objective: This study evaluated the effectiveness of “Young Care,” a community-based intervention designed to enhance youth knowledge, attitudes, and caregiving practices (KAP) toward older adults. Methods: A two-day structured training was conducted in Maha Sarakham Province in 2023 using a pre-post mixed-methods design. Middle and high school students participated in lectures, multimedia sessions, and experiential learning activities related to caregiving. Quantitative data were collected using validated KAP questionnaires, while qualitative insights were obtained from focus group discussions involving students, older persons, caregivers, and local leaders. Results: Post-intervention analysis revealed significant improvements in knowledge and attitudes (p < 0.001), accompanied by increased empathy, caregiving initiative, and a sense of moral responsibility among participants. Conclusions: The initiative fostered formal partnerships among schools, local governments, healthcare providers, and universities through memoranda of understanding. These collaborations enabled budgetary support and outreach to out-of-school youth, positioning “Young Care” as a scalable, youth-centered strategy to address Thailand’s long-term care challenges. Full article

Early childhood forest and nature education plays a vital role in shaping values and promoting sustainability throughout life. Conceptualized in Denmark, forest and nature childcare groups have been established in Austria for over 20 years, contributing to mental well-being and supporting both Education for Sustainable Development (ESD) and Early Childhood Education and Care (ECEC). With increasing demand for childcare and a growing disconnect from nature—factors linked to physical and mental health challenges—there is a pressing need to expand these groups and integrate them into formal legal frameworks. This study examines the organization, staffing, infrastructure, risk prevention, and hygiene of 79 Austrian forest and nature kindergarten groups, identifying key areas of improvement to ensure safe access for all children, including those in public childcare. A semi-standardized online survey of 72 groups was analyzed using descriptive and statistical methods, including a Spearman correlation, Kruskal–Wallis test, Chi-square test, and ANOVA. Results revealed three main infrastructure types—house, container/trailer, and tipi—with houses offering the most comprehensive facilities. The ANOVA indicated significant effects of sponsorship type (p < 0.01), caregiver numbers (p < 0.001), and their interaction (p < 0.05) on half-day care costs. Currently, legal frameworks exist only in Tyrol and Salzburg. Broader access requires standardized infrastructure and risk assessment guidelines, collaboratively developed with stakeholders, to ensure safety and inclusivity in Austrian forest and nature childcare groups. Full article

Background/Objectives: Neurodegenerative proteinopathies, such as Alzheimer’s disease (AD), Parkinson’s disease (PD), and dementia with Lewy bodies (DLB), are increasingly prevalent worldwide mainly due to population aging. These conditions are marked by complex etiologies, overlapping pathologies, and progressive clinical decline, with significant consequences for patients, caregivers, and healthcare systems. This review aims to synthesize evidence on the healthcare complexities of major neurodegenerative proteinopathies to highlight current knowledge gaps, and to inform future care models, policies, and research directions. Methods: We conducted a comprehensive literature search in PubMed/MEDLINE using combinations of MeSH terms and keywords related to neurodegenerative diseases, proteinopathies, diagnosis, sex, management, treatment, caregiver burden, and healthcare delivery. Studies were included if they addressed the clinical, pathophysiological, economic, or care-related complexities of aging-related neurodegenerative proteinopathies. Results: Key themes identified include the following: (1) multifactorial and unclear etiologies with frequent co-pathologies; (2) long prodromal phases with emerging biomarkers; (3) lack of effective disease-modifying therapies; (4) progressive nature requiring ongoing and individualized care; (5) high caregiver burden; (6) escalating healthcare and societal costs; and (7) the critical role of multidisciplinary and multi-domain care models involving specialists, primary care, and allied health professionals. Conclusions: The complexity and cost of neurodegenerative proteinopathies highlight the urgent need for prevention-focused strategies, innovative care models, early interventions, and integrated policies that support patients and caregivers. Prevention through the early identification of risk factors and prodromal signs is critical. Investing in research to develop effective disease-modifying therapies and improve early detection will be essential to reducing the long-term burden of these disorders. Full article

Background: Preterm infants and their families face a challenging experience during their stay in the neonatal intensive care unit (NICU). Family-centered care emphasizes the importance of welcoming parents, involving them in their baby’s daily care, and supporting the development of parenting skills. NICU staff should support parents in understanding their baby’s needs and in strengthening the parent–infant bond. Although many tools outline what parents should learn, there is a limited structured framework to monitor their involvement in the infant’s care. Tracking parental participation in daily caregiving activities could support professionals in effectively guiding families, ensuring a smoother transition to discharge. Aims: The aim of this study was to evaluate the adherence to and effectiveness of a structured tool for parental involvement in the NICU. This tool serves several key purposes: to track the progression and timing of parents’ autonomy in caring for their baby, to support parents in building caregiving competencies before discharge, and to standardize the approach of NICU professionals in promoting both infant care and family engagement. Methods: A structured template form for documenting parental involvement (“together TO-CARE template”, TTCT) was integrated into the computerized chart adopted in the NICU of Modena. Nurses were asked to complete the TTCT at each shift. The template included the following assessment items: parental presence; type of contact with the baby (touch; voice; skin-to-skin); parental involvement in care activities (diaper changing; gavage feeding; bottle feeding; breast feeding); and level of autonomy in care (observer; supported by nurse; autonomous). We evaluated TTCT uploaded data for very low birth weight (VLBW) preterm infants admitted in the Modena NICU between 1 January 2023 and 31 December 2024. Staff compliance in filling out the TTCT was assessed. The timing at which parents achieved autonomy in different care tasks was also measured. Results: The TTCT was completed with an average of one entry per day, during the NICU stay. Parents reached full autonomy in diaper changing at a mean of 21.1 ± 15.3 days and in bottle feeding at a mean of 48.0 ± 22.4 days after admission. The mean length of hospitalization was 53 ± 38 days. Conclusions: The adoption of the TTCT in the NICU is feasible and should become a central component of care for preterm infants. It promotes family-centered care by addressing the needs of both the baby and the family. Encouraging early and progressive parental involvement enhances parenting skills, builds confidence, and may help reduce post-discharge complications and readmissions. Furthermore, the use of a standardized template aims to foster consistency among NICU staff, reduce disparities in care delivery, and strengthen the support provided to families of preterm infants. Full article

Background: Dystonic cerebral palsy (DCP) is a complex, disabling manifestation of secondary dystonia, which significantly impacts motor function, quality of life, and well-being. Conventional pharmacologic therapies frequently do not relieve symptoms sufficiently. Deep brain stimulation (DBS) of the globus pallidus internal segment (GPi) has gained increasing attention as a neuromodulatory therapy for refractory dystonia. Still, the experience of the effect of GPi DBS treatment in adults with DCP has, until recently, been limited. Methods: We performed a retrospective, two-center case series of 11 adult patients with medically refractory DCP who underwent bilateral GPi-DBS. The clinical outcomes were evaluated based on the Burke–Fahn–Marsden Dystonia Rating Scale (BFMDRS), the Functional Independence Measure (FIM), the Gross Motor Function Classification System (GMFCS), and the Caregiver Burden Scale (CBS). The assessments were done preoperatively and at 1-year follow-up. Changes in continuous variables were analyzed using paired t-tests. Results: At the 1-year follow-up, the mean BFMDRS score improved from 69.6 ± 27.6 to 54.3 ± 36.5 (p = 0.001), indicating a significant reduction in overall dystonia severity. Functional independence also improved, demonstrated by the rise in FIM scores from 65.3 ± 33.9 to 79.2 ± 43.4 (p = 0.006). Although GMFCS levels did not change in most patients (p = 0.125), the burden on caregivers decreased significantly, with CBS scores falling from 35.7 ± 18.8 to 32.0 ± 17.1 (p = 0.015). There were no surgical complications. Conclusions: In adults, bilateral GPi-DBS is a safe and effective intervention for DCP, improving motor control and increasing functional independence while decreasing caregiver burden. These findings lend support to its role in the multidisciplinary management of DCP. Full article