Search Results (204)

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 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 “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/Objectives: Family self-care (FSC) is increasingly recognized as a vital aspect of caregiving in pediatric chronic conditions. However, its development in families of children with intellectual disabilities (IDs) remains underexplored. This study aimed to examine how families construct and sustain FSC, and to identify factors that shape its development across four domains: physical, cognitive, psychosocial, and behavioral. Methods: A qualitative study was conducted using an abductive approach, combining inductive thematic analysis with a deductively applied theoretical framework. Semi-structured interviews were carried out with nine families of children with ID in southern Portugal. The children ranged in age from 4 to 15 years, and the parents were aged between 29 and 53 years. The data was analyzed using Bardin’s content analysis, supported by NVivo software, and organized according to the FSC framework. This study followed COREQ guidelines. Results: The families described a range of self-care strategies, including environmental adaptations, experiential learning, emotional regulation, and long-term planning. These practices were shaped by contextual factors such as access to healthcare, relationships with professionals, emotional support networks, and socioeconomic conditions. Four emergent conclusions illustrate how structural and relational dynamics influence FSC in daily caregiving. Conclusions: FSC is a dynamic, multidimensional process shaped by lived experience, family interactions, and systemic support. The findings support inclusive, family-centered care models and inform clinical practice, training, and policy in pediatric IDs. Full article

Background: Caregivers of children often encounter barriers when accessing pediatric healthcare services. These challenges highlight the need for digital innovations to improve accessibility and efficiency in pediatric outpatient care. Objectives: This study aimed to design, implement, and pilot evaluate the Smart Well Child Center application in conjunction with enhancements to the Pediatric Outpatient Department. Methods: This study employs a mixed-methods research approach. The application was developed following the system development life cycle (SDLC) process, and its performance was subsequently evaluated. Additionally, its effectiveness in real-world settings was assessed through a satisfaction survey completed by 85 child caregivers. The results were summarized using the mean and standard deviation, and satisfaction levels were compared using paired t-test and repeated measures ANOVA. Results: The findings reveal that caregivers face significant challenges, including financial burdens related to travel, prolonged wait times, and difficulties accessing healthcare services. In response, the application was designed to incorporate key functionalities. Within the pre-consultation self-assessment module, caregivers can complete evaluations and receive recommendations directly through the application. Furthermore, the service procedure flowchart was restructured to seamlessly integrate these digital innovations, thereby enhancing the overall healthcare experience. The evaluation results indicate that the application achieved high performance ratings across all assessed dimensions (4.06 ± 0.77). Additionally, caregivers reported a substantial increase in satisfaction levels both immediately after implementation (4.58 ± 0.57) and one month afterward (4.59 ± 0.33). Conclusions: Given these findings, it is recommended that the hospital fully adopt the Smart Well Child Center application to improve healthcare accessibility and reduce patient wait times. Future research should assess the long-term impact of the intervention on both caregiver outcomes and healthcare professional workflow, satisfaction, and system usability, to inform broader implementation strategies. Full article

Background: Children with food allergies can present with paediatric feeding disorder (PFD). However, access to coordinated multidisciplinary services to support these children in Australia is inconsistent. To date, the availability of services or the perceived care needs of Australian health professionals working with this population have not been formally explored. Methods: A web-based survey was distributed to health professionals in Australia. Quantitative demographic data were summarised using descriptive statistics, and open-ended responses were analysed using content analysis. Results: The final sample comprised 98 responses, with speech pathologists representing the largest professional group (n = 39; 40%). A majority (59%) worked in hospital-based services. Open-ended responses were coded utilising content analysis. Three categories were developed including (1) service delivery, (2) intervention, and (3) resources. Services were commonly impacted by long wait times, limited staff training, and inconsistencies between hospital and community care. Additionally, mental health support was frequently reported as insufficient. Conclusions: The findings from this study underscore the need for integrated services for children with food allergies and paediatric feeding disorder. Recommended areas for future research include exploring caregiver perspectives and the impact of food allergies and paediatric feeding disorder, and consideration of co-designed studies to inform service improvement initiatives. Full article

The type of non-professional or professional support received affects the quality of life of the patient and their caregivers. Social support is the type of interaction that is taken by the patient and his caregivers in a problematic, difficult, stressful, or critical situation. Aim: The aim of the study was to assess the impact of social support on the functioning of patients under nursing home care. Material and methods: The study included 148 chronically ill patients under home nursing care. The study used the diagnostic survey method; the research technique was a questionnaire containing basic data about the respondent and the Social Support Scale (SWS) by Krystyna Kmiecik-Baran. Results: The need to continue the causal treatment at home means that the main source of support for care beneficiaries are nurses who provide medical services at the patient’s home, supported by doctors and family members of the patient. According to patients’ subjective assessment of the support they received from nurses, patients rated the informational support provided by nurses highest at 14.3 points and emotional support at 13.3 points (SD 1.776). on a scale where the maximum score was 16 points. In the opinion of the surveyed patients, the value-added support provided was the lowest-rated category by patients, 9.74 points (SD 2.505). Instrumental support was also rated very poorly by the respondents (10.17 points (SD 2.069). In each category, there was no statistically significant difference at the p < 0.05 level in the respondents’ evaluation, which means that the expressed opinion on each type of support from the highest to the lowest evaluation: informational, emotional, instrumental, and evaluative—overlapped in the patient group and the family group. Conclusions: Patients under home care highly appreciated the support provided to them by the nursing staff. Social support for a chronically ill person who requires constant care and care by the nursing staff is a form of direct impact that relieves stress and tension, minimizes the effects of the disease, directly affects the course of treatment and care, and prevents stigmatization. Full article

The transition from hospital-based palliative care to home care is a critical phase often marked by logistical, medical, and emotional challenges. Effective discharge planning is essential to ensure continuity of care, yet gaps in communication, interdisciplinary coordination, and access to resources frequently hinder this process. This qualitative study explored key barriers, related support needs, and strategies for optimising palliative care discharge through semi-structured interviews with 28 participants, including healthcare professionals, recently discharged palliative care patients, and primary caregivers. Reflexive thematic analysis revealed five main themes: (1) discharge planning and coordination; (2) symptom management and medication; (3) psychosocial support; (4) communication and information; (5) the role of assistive devices and home care services. Discharge processes were often late or unstructured. Poor interdisciplinary collaboration and a lack of caregiver preparation also contributed to hospital readmissions and emotional distress. By focusing on needs, our analysis identifies not only what was lacking but also what is required to overcome these barriers. Our findings suggest that standardised discharge protocols and checklists, earlier planning, structured communication tools, and improved integration of home care services could enhance patient outcomes and reduce caregiver burden. Addressing psychosocial needs and ensuring timely access to assistive devices are also crucial. Strengthening interdisciplinary collaboration and refining discharge practices can facilitate smoother transitions and improve the quality of palliative care at home. Full article

This paper describes the modelling of Key Health Indicators (KHI) of frail individuals through non-invasive sensors located in their environment and wearable devices. Primary care professionals defined four indicators for daily health monitoring: sleep patterns, excretion control, physical mobility, and caregiver social interaction. A minimally invasive and low-cost sensing architecture was implemented, combining indoor localisation and physical activity tracking through environmental sensors and wrist-worn wearables. The health outcomes are modelled using a knowledge-based framework that integrates knowledge graphs to represent control variables and their relationships with data streams, and fuzzy logic to linguistically define temporal patterns based on expert criteria. The proposed approach was validated in a real-world case study with an older adult living independently in Granada, Spain. Over several days of deployment, the system successfully generated interpretable daily summaries reflecting relevant behavioural patterns, including rest periods, bathroom usage, activity levels, and caregiver proximity. In addition, supervised machine learning models were trained on the indicators derived from the fuzzy logic system, achieving average accuracy and F1 scores of 93% and 92%, respectively. These results confirm the potential of combining expert-informed semantics with data-driven inference to support continuous, explainable health monitoring in ambient assisted living environments. Full article

Background/Objectives: Effective communication between healthcare professionals and patient caregivers is paramount in the surgical waiting area, particularly during periods of heightened stress and emotional vulnerability. Globally, communication practices exhibit considerable variability, from traditional face-to-face interactions to integrating advanced digital technologies. Despite innovations, a comprehensive understanding of the impact of diverse communication strategies on patient caregiver satisfaction remains underdeveloped. This scoping review was designed to systematically map the existing literature on healthcare communication practices and identify strategies that may influence satisfaction among patient caregivers. Methods: A thorough search of multiple databases—Scopus, PubMed, CINAHL, Embase, ProQuest, Web of Science, the Cochrane Library, and clinical trial registries—was conducted. Only studies published in English or those for which an English full text was accessible were included. Eligible studies were those undertaken in hospital settings, including operating theaters, surgical units, surgical waiting areas, postoperative intensive care units, emergency departments, and other clinical areas focusing on patient caregivers. The review adhered to the methodological framework recommended by the Joanna Briggs Institute for scoping reviews and was reported following the most recent PRISMA-ScR guidelines. Results: Ultimately, five studies met the inclusion criteria. The selection process involved a structured search utilizing Medical Subject Headings (MeSH), keywords, and index terms, supplemented by manual reference list screening. Initial screening was performed based on titles and abstracts, followed by full-text evaluation using a standardized selection form. Data extraction focused on the communication methods, study designs, and outcomes related to patient caregiver satisfaction. The findings are synthesized narratively and presented through tables and figures, offering a comprehensive overview of global communication practices and their influence on patient caregiver satisfaction in surgical environments. Across the five included studies, digital communication interventions such as SMS, mobile apps, or video updates reported improved patient caregiver satisfaction (e.g., 70.8% in Canada and 97% in Switzerland) and also reduced patient caregiver anxiety (e.g., STAI score ≥ 44) in 74.2% of Ethiopian patient caregivers. Worldwide evidence highlights the practical importance of tailored digital communication practices to support providing timely and accessible information to patient caregivers, while also revealing gaps linked to insurance status, digital literacy, and various communication approaches in healthcare systems. Conclusions: The five studies included showed considerable variation in communication practices across surgical settings. The main findings reveal that structured, timely, and transparent communication, mainly via digital tools such as SMS updates and mobile applications, enhanced patient caregiver satisfaction and alleviated their emotional distress too. Nevertheless, gaps were identified in postoperative communication, and challenges, such as technological accessibility, digital literacy skills of patient caregivers, and inconsistent methods for measuring satisfaction outcomes, were noted across studies. This scoping review identified the different types of healthcare communication practices adopted globally in surgical care settings and also demonstrated their influence on patient caregiver satisfaction. Traditional and digital communication practices both have their significant impact on patient caregiver experiences in surgical healthcare settings, focusing more on timely and consistent real-time updates and culturally sensitive information. Addressing the existing communication gaps and having tailored communication approaches to specific contexts may lead to improved patient caregiver support and surgical outcomes. Full article

This study aims to illustrate the impact of accumulated traumatic experiences in adolescence and to evaluate the potential of brief focal psychotherapy (BFP) as a treatment approach for complex trauma. We present the case of a 14-year-old boy who experienced vicarious gender-based violence, child abuse, early maternal separation without alternative secure attachment figures, and forced sudden migration. The patient exhibited symptoms consistent with post-traumatic stress disorder (PTSD) and complex trauma. The culturally sensitive intervention, delivered at a public child and adolescent mental health center, consisted of twenty weekly individual sessions of 45 min each, complemented by three 45 min psychoeducation sessions with the caregiver. The assessment was conducted using a multitrait and multi-informant approach, systematically gathering information across multiple domains of functioning (emotional–behavioral, physical, cognitive, self-perception, and relational) and from different sources (the adolescent, his mother, and the clinician) through clinical interviews, projective techniques, and parental feedback. The primary therapeutic focus was the establishment of a secure therapeutic alliance to facilitate emotional exploration and trauma processing. Following treatment, the patient demonstrated significant improvements in emotional regulation, family relationships, and school performance, as measured by both self-report and parental observations. This case highlights the potential of BFP in addressing complex trauma in adolescents, particularly during a developmental stage marked by increased vulnerability to the effects of chronic trauma exposure. The findings suggest that BFP can effectively reduce both acute symptomatology and broader psychosocial consequences associated with prolonged and cumulative trauma. Further research, particularly controlled studies and longitudinal follow-ups, is needed to refine and optimize the use of BFP by mental health professionals working with adolescents affected by complex trauma. Full article

Background/Objectives: Voluntary stopping of eating and drinking (VSED) is a way to hasten death or end life prematurely. VSED is controversial, and research is essential to inform this debate. The aim was to systematically synthesize empirical data on the attitudes, motives, and experiences related to VSED from the perspective of caregivers. Methods: This systematic mixed-methods review (PROSPERO CRD42022283743) included qualitative and quantitative research. The MEDLINE, CINAHL, PsycINFO, Google Scholar, and BELIT databases were searched for English and German articles published between 1 January 2013 and 12 November 2021. Studies examining experiences, attitudes, and knowledge regarding VSED were eligible. We analyzed the data inductively after quantitative data transformation. Quality and confidence were assessed using the Mixed Methods Appraisal Tool (MMAT) and GRADE-CERQual approach, respectively. Results: We identified 22 articles, including 16 studies. The participants were healthcare professionals and relatives, but not those who chose VSED. The motives for VSED are based on high symptom burdens and are closely related to self-determination. Most perceive VSED as a natural death and accept the patient’s decision. However, this acceptance also depends on other factors, such as patient characteristics. Most healthcare professionals would accompany patients during VSED, sometimes leading to advocacy. Relatives often play an active role in VSED and may experience distressing grief if they struggle with their support or the dying situation. The confidence in the review findings ranged from moderate to very low. Our findings on the challenging and positive experiences related to VSED and the resulting needs have been published elsewhere. Conclusions: VSED is a complex phenomenon affecting patients, nursing staff, physicians, and relatives. We provide an empirical basis for VSED to support research, debate, and practice. Full article

Background/Objectives: Understanding environmental experiences in residential dementia care is crucial for enhancing care practices, training, and policy. The environment’s role in dementia care is complex. Allied health and nursing professionals must consider environmental aspects concerning care for individuals with dementia. This study investigates how employed caregivers experience and perceive environmental influences in residential dementia care. Methods: In September 2024, we systematically searched PubMed, CINAHL, and PsycINFO for qualitative studies, adhering to SRQR guidelines. The CASP tool was used to assess study quality, ensuring rigor and reliability in selection. The meta-synthesis is registered with Prospero: CRD42024598962. A template analysis was conducted to structure emerging themes. Results: Fifteen studies met the inclusion criteria. Key themes included: 1. Working Environment: Informed understandings—capturing caregivers’ perceptions of organisational structures and support. 2. Lived Environment: Stability and Clarity—highlighting the impact of relational and social dynamics on caregiving; and 3. Physical and Built Environment: Impact on Overall Care Experience—looking at the role of space and design in facilitating effective dementia care. Following this, more subthemes emerged, resulting in the final template. Conclusions: The key gaps included understanding the existing strengths of practice, differences in job roles, funding, the role of Employed Caregivers, and Employed Caregivers’ personhood. Emphasising evidence-based practice and clearly defining job roles may improve decision-making and collaboration. It is essential to identify funding gaps and provide clear guidelines and training to ensure equitable care and maximise the contributions of Employed Caregivers working with nurses and allied health professionals. Recognising Employed Caregivers’ personhood could enhance job satisfaction and reduce burnout. Policies should address these gaps by providing training to clarify roles and enhance skills. A supportive, person-centred workplace may improve satisfaction and care outcomes. Future research should evaluate these aspects and continue to identify the best practices. Full article

We investigated the relationship between process quality in early childhood education and care (ECEC) and children’s socio-emotional development in a meta-analysis of longitudinal studies. Our multi-level meta-analysis of 31 publications reporting on 16 longitudinal studies (N = 17,913 children, age: 2.5–18 yrs) demonstrates that the process quality of ECEC is a small but significant predictor of children’s socio-emotional development over time (ES = 0.103, SE = 0.026, p < 0.001, 95% CI: 0.052–0.155). This longitudinal association extends to the age of 18 years in our sample. Process quality of ECEC is, thus, a significant and stable predictor of children’s socio-emotional development and well-being from toddlerhood to adolescence. The longitudinal relationship was moderated by the type of care (center-based vs. home-based) and the informant (parent, professional caregiver, external assessor, or self-report of the child). Implications for future ECEC research are discussed. Full article

Background/Objectives: Violence in healthcare settings, especially in emergency departments (ED), remains an important public health issue worldwide. Thus, additional insight into the effect of these incidents into nurses’ professional attitudes, their work life and related implications to patient safety issues may be valuable. We investigated ED nurses’ living experience of exposure to workplace violence by healthcare service users, with focus on the impact on them. Methods: Following a qualitative study design, data were collected (January–June 2024) through semi-structured interviews with open-ended questions and were analyzed according to an inductive, content analysis approach. Participants provided informed consent, and data collection continued until theoretical saturation was reached. Results: The sample included six nurses. Various forms of workplace violence and its psychological, social, and professional consequences were identified. Violence was more frequently perpetrated by patients’ relatives, with verbal aggression being the most common form. A fundamental divergence in needs and expectation between patients and their family members/caregivers, on one side, and participants, on the other, revealed a pronounced empathy gap. Each group remained focused on its own priorities while struggling to recognize or accommodate others’ perspectives. This lack of mutual understanding contributed to tension that, in some cases, escalated even into physically violent incidents against the participants. A similar gap was identified between the participants’ needs and administrators’ attitudes and related policies. The failure of administrative measures to bridge this gap was described as a crucial factor in further escalating conflicts and tension in the ED. Conclusions: Further research on quality improvement projects, including all stakeholders, aiming to enhance empathy in all parties involved is proposed. Full article