Search Results (1,184)

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

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

Health literacy improves informal caregivers’ knowledge and ability to provide care. The aim of this study is to analyze the impact of a group-based intervention on the health literacy of informal caregivers of children with special health needs (SHNs). The intervention focuses on movement, hydrotherapy, walking, and relaxation, with three evaluation stages. Participants included 34 informal caregivers of children with SHNs, recruited at a Physical Medicine and Rehabilitation Service. We collected sociodemographic data of the participants and measured their health literacy through the short-form version of the European Health Literacy Survey Questionnaire (HLS-EU-Q16). Around 70% of the participants were female, with a mean age of 41.06 ± 4.98 years, and nearly 85% were married or in a de facto union. About 26% were unemployed, and more than 65% had completed secondary education or higher. The mean scores of the HLS-EU-Q16 were statistically significantly higher throughout the intervention, with differences over the evaluation stages [F(2,56) = 75.55; p < 0.05]. A structured, dynamic, and group-based intervention plan showed improvements in the health literacy of the participants, with an increase in the percentage of participants with sufficient and excellent levels of health literacy at the end of the intervention. 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

The rapid increase in the global population of older adults presents a significant challenge, but also a unique opportunity to leverage technological advancements for promoting independent living and well-being. This study introduces the CIREI framework, which is a comprehensive model designed to enhance the integration of smart home and assistive technologies specifically for pre-frail older adults. Developed through a systematic literature review and innovative and comprehensive co-design activities, the CIREI framework captures the nuanced needs, preferences, and challenges faced by older adults, caregivers, and experts. Key findings from the co-design workshop highlight critical factors such as usability, privacy, and personalised learning preferences, which directly influence technology adoption. These insights informed the creation of an intelligent middleware prototype named WISE-WARE, which seamlessly integrates commercial off-the-shelf (COTS) devices to support health management and improve the quality of life for older adults. The CIREI framework’s adaptability ensures it can be extended and refined to meet the ever-changing needs of the ageing population, providing a robust foundation for future research and development in user-centred technology design. All workshop materials, including tools and methodologies, are made available to encourage the further exploration and adaptation of the CIREI framework, ensuring its relevance and effectiveness in the dynamic landscape of ageing and technology. This research contributes significantly to the discourse on ageing in place, digital inclusion, and the role of technology in empowering older adults to maintain independence. Full article

The Emporia State University (ESU) /Kansas Arts Commission (KAC) Arts in Medicine Partnership exemplifies interdisciplinary collaboration and the capacity of art therapy to impact mental health and well-being. Through the partnership, art therapy services were offered to medical agencies across the state of Kansas. Participants included medical patients, families, caregivers, staff, and professionals. The article introduces (1) the profession of art therapy and the subspecialty of medical art therapy, (2) the ESU/KAC Arts in Medicine Partnership, (3) examples of positive psychology-informed arts-based experiences, and (4) a pilot study designed to explore the impact of group art therapy sessions with medical teaching faculty. Full article

The COVID-19 pandemic has exposed and intensified structural tensions surrounding work−life balance, precarity, and gender inequalities in academia. This paper examines the spatial, temporal, and emotional disruptions experienced by early-career and precarious researchers in Italy during the first national lockdown (March–April 2020) and their engagement in remote academic work. Adopting an exploratory and qualitative approach, the study draws on ten narrative video interviews and thirty participant-generated images to investigate how structural dimensions—such as gender, class, caregiving responsibilities, and the organizational culture of the neoliberal university—shaped these lived experiences. The findings highlight the implosion of boundaries between paid work, care, family life, and personal space and how this disarticulation exacerbated existing inequalities, particularly for women and caregivers. By interpreting both visual and narrative data through a sociological lens on gender, work, and organizations, the paper contributes to current debates on the transformation of academic labor and the reshaping of temporal work regimes through the everyday use of digital technologies in contemporary neoliberal capitalism. It challenges the individualization of discourses on productivity and flexibility and calls for gender-sensitive, structurally informed policies that support equitable and sustainable transitions in work and family life, in line with European policy frameworks. Full article

Aim: To explore the experiences, beliefs, and values of patients who participated in a two-arm randomized clinical trial assessing a nurse-led intervention program for chronic pain self-management, which demonstrated positive effects on pain reduction, depression, and anxiety, and on health-related quality of life 24 months after completion of the program. Design: Descriptive phenomenological qualitative study. Methods: Patients were recruited via telephone, informed about the study, and invited to participate in an individual interview at a place of their choice (hospital or home). All interviews were audiotaped, and an inductive thematic analysis was performed. Results: Seven interviews were carried out between both groups. Six emerging categories were found: effective relationship with the healthcare system, learning to live with pain, family and social support, behaviors regarding pain, resources for self-management, and concomitant determinants. Conclusions: Patients report key aspects that help us to understand the impact of this type of nurse-led group intervention: the intrinsic therapeutic effect of participating in the program itself, the ability to learn to live with pain, the importance of family and social support, the modification of pain-related behaviors, and the identification of resources for self-care. The findings highlight the need for gender-sensitive, individualized care approaches to chronic pain, addressing stigma and social context. Expanding community-based programs and supporting caregivers is essential, as is further research into gender roles, family dynamics, and work-related factors. Full article

The literature has been scarce in addressing parental interference/family abduction and its relationship with depressive symptoms. Due to this, the objective of this study was to examine the association between family abduction/parental interference and depressive symptoms in a national sample of 11,568 children and adolescents aged 12 to 18 from Chile. Robust linear regression models were conducted to assess how these experiences are related to depressive symptoms while controlling for age. Our results show that children and adolescents who reported these experiences in their lives presented higher levels of depressive symptoms. Additionally, although all forms of caregiver victimization were associated with depressive symptoms, parental interference/family abduction also showed a significant association, even when controlling for sociodemographic variables. These findings highlight the need for attention to the phenomenon of family abduction/parental interference, especially concerning its potential associations with mental health outcomes such as depression. Theoretically, the study contributes to the limited body of research on this form of caregiver victimization, and practically, it provides evidence that may inform future prevention strategies and mental health policies targeting children and adolescents exposed to high-conflict family dynamics in the Chilean context. Full article

Background/Objectives: Food allergy (FA) is a growing concern in pediatric care, requiring effective avoidance strategies and timely emergency responses. The role of caregivers is central to the daily management of FA. This study aimed to assess parental knowledge, preparedness, and behaviors regarding pediatric FA management, focusing on both prevention and emergency readiness. Methods: A cross-sectional survey was conducted from December 2024 to April 2025 through the SurveyMonkey^® platform, promoted by the Italian Society of Pediatric Allergology and Immunology (SIAIP). The anonymous, structured questionnaire was distributed online and in two Italian university hospitals. A total of 129 fully completed responses from caregivers of children with FA were analyzed. The survey explored self-perceived knowledge, symptom recognition, preventive actions, emergency preparedness, and communication practices. Results: Only 9.3% of parents considered themselves “very informed,” while 54.3% reported limited or no knowledge. Just 16.0% recognized all symptoms of an allergic reaction, and only 24.0% could distinguish mild reactions from anaphylaxis. Notably, 67.4% reported not knowing how to respond to anaphylaxis, and 83.7% did not possess an epinephrine auto-injector. Preventive measures at home were inconsistently applied, and 41.1% took no precautions when eating out. Communication with external caregivers was often informal or absent. Only 33% updated physicians regularly. Conclusions: The findings reveal significant gaps in parental preparedness and highlight critical areas for educational intervention. Enhanced caregiver training, standardized communication protocols, and improved clinical follow-up are essential to strengthen pediatric FA management and safety. Full article

The “Baby Ubuntu” programme is a well-established, low-cost, community-based intervention to support caregivers of children with complex neurodisability, like cerebral palsy, in low- and middle-income country (LMIC) contexts. This process-focused paper describes our utilisation of the ADAPT guidance to adapt “Baby Ubuntu” for use in ethnically and linguistically diverse, and economically deprived urban boroughs in the United Kingdom (UK). The process was guided by an adaptation team, including parents with lived experience, who explored the rationale for the intervention from local perspectives and its fit for this UK community. Through qualitative interviews and co-creation strategies, the perspectives of caregivers and healthcare professionals substantially contributed to the “Encompass” programme theory, drafting the content, and planning the delivery. Ten modules were co-produced with various topics, based on the “Baby Ubuntu” modules, to be co-facilitated by a parent with lived experience and a healthcare professional. The programme is participatory, allowing caregivers to share information, problem solve, and form supportive peer networks. The “Encompass” programme is an example of a “decolonised healthcare innovation”, as it aims to transfer knowledge and solutions developed in low- and middle-income countries to a high-income context like the UK. Piloting of the new programme is underway. Full article

Background. Parents of autistic children face challenges that can negatively affect the quality of the parent–child relationship. This study aimed to explore the potential protective role of parental resolution about positive (closeness) and negative (conflict and dependence) aspects of the parent–child relationship, with parenting stress and caregiving burden as mediators. Methods. A cross-sectional study (ethical approval: CE n. 92949) was conducted with 51 Italian parents of autistic children. A multiple mediation model was tested. Results. Parental resolution had a significant total effect (β = 0.012; BootLLCI = 0.002; BootULCI = 0.024) and a significant direct effect on the parent–child relationship (β = 0.223; BootLLCI = 0.058; BootULCI = 0.389), indicating that resolving the child’s diagnosis could potentially influence parents’ perceptions of their relationship with their child, possibly leading to views of it being somewhat closer, experiencing fewer conflicts, and involving a lower degree of dependence. An indirect effect via parenting stress was also significant (β = −0.130; BootLLCI = −0.009; BootULCI = −0.291), while caregiving burden did not show a mediating effect. Conclusion: Despite the exploratory and cross-sectional nature of this study, the findings highlight the importance of promoting family well-being in the context of autism. The findings may inform future research on parental resources and guide clinicians in developing intervention programmes to mitigate the emotional impact of receiving a child’s autism diagnosis. Full article

Background/Objectives: Access to specialized care for patients with cognitive impairment in remote areas is often limited. Despite the increasing adoption of telemedicine, standardized guidelines have not yet been specified. This study aimed to develop a comprehensive protocol for the specialized neurological, neuropsychological, and neuropsychiatric assessment of patients with cognitive disorders in remote areas through telemedicine. Methods: We analyzed data from (i) a comprehensive literature review of the existing recommendations, reliability studies, and telemedicine models for cognitive disorders, (ii) insights from a three-year experience of a specialized telemedicine outpatient clinic for cognitive movement disorders in Greece, and (iii) suggestions coming from dementia specialists experienced in telemedicine (neurologists, neuropsychologists, psychiatrists) who took part in three focus groups. A critical synthesis of the findings was performed in the end. Results: The final protocol included: technical and organizational requirements (e.g., a high-resolution screen and a camera with zoom, room dimensions adequate for gait assessment, a noise-canceling microphone); medical history; neurological, neuropsychiatric, and neuropsychological assessment adapted to videoconferencing; ethical–legal aspects (e.g., data security, privacy, informed consent); clinician–patient interaction (e.g., empathy, eye contact); diagnostic work-up; linkage to other services (e.g., tele-psychoeducation, caregiver support); and instructions for treatment and follow-up. Conclusions: This protocol is expected to serve as an example of good clinical practice and a source for official telemedicine guidelines for cognitive disorders. Ultimate outcomes include the potential enhanced access to specialized care, minimized financial and logistical costs, and the provision of a standardized, effective model for the remote diagnosis, treatment, and follow-up. This model could be applied not only in Greece, but also in other countries with similar healthcare systems and populations living in remote, difficult-to-access areas. Full article

Background/Objectives: Sexual health research involving young adolescents remains scarce despite rising rates of early sexual debut, pregnancies, and sexually transmitted infections (STIs) in this population. We explored community stakeholders’ perspectives on engaging young adolescents in sexual health research in Western New York to inform strategies for engaging young adolescents in sexual health research. Methods: This qualitative descriptive study was conducted from April 2022 to June 2023. Seventeen community stakeholders, including health education teachers, youth counselors, and adolescent health providers, participated in semi-structured in-depth interviews. Data were analyzed using conventional content analysis, managed by MAXQDA 2020. The rigor and trustworthiness of the data were ensured through triangulation with observations, peer debriefing, team analysis, and respondent validation. Results: Participants were predominantly female (94.1%), 52.9% Black/African American, 41.2% White, and 5.9% Caucasian–Indian American, and aged 23–59 years. Four themes emerged: perspectives on conducting sexual health research with young adolescents, recruitment strategies, sexual health questions appropriate for young adolescents, and building readiness for participation in sexual health research. Participants reported the need for sexual health research with young adolescents and recommended building a trusting relationship and involving schools, parents, and trusted community organizations in the research process. Suggested research questions included those related to awareness of sex, STIs, available resources, experiences with sexual education, and desired support. The findings also revealed the need to initiate sexual health conversations early when children start asking questions, as a foundation for meaningful participation in sexual health research. Conclusions: The findings suggest that sexual health research with young adolescents is feasible and necessary, with implications for the design of developmentally appropriate sexual health research and interventions grounded in trust and community collaboration. Future research should explore the perspectives of caregivers and young adolescents to inform studies and programs that are attuned to young adolescents’ developmental needs. Full article