Search Results (1,270)

Patients with cancer often experience intertwined symptom burden and functional decline that contribute to falls, unsafe transfers, uncontrolled symptoms, caregiver strain, and crisis-driven care. Physical medicine and rehabilitation (PM&R), also known as physiatry, and specialty PC both address suffering and quality of life through complementary clinical approaches; however, collaborative care with and between these two specialties is inconsistent in routine oncology practice. This paper presents a clinical implementation framework informed by targeted literature synthesis for bidirectional referral and co-management between PM&R and PC in oncology. The framework was informed by the PC referral criteria literature, cancer rehabilitation triage literature, trigger-based serious illness identification models, and implementation science. Four clinic-usable tools are proposed, including a scope and overlap map, a clinical-needs gradient, a referral trigger table linking common clinical signals to the reason for referral and expected clinical actions, and a primary-service triage workflow. This framework is intended to clarify which service is best positioned to be the primary supportive service according to the patient’s current needs, when rehabilitation therapy alone may be sufficient, and when co-management should be the default. This concept-to-practice model is designed to facilitate early, needs-based referrals and coordinated supportive care in oncology settings. Full article

Genetic cardiomyopathies (GCMs) are chronic heart muscle disorders requiring lifelong monitoring and treatment. Although quality of life (QoL) and health-related quality of life (HRQoL) are increasingly recognized as important outcomes in cardiomyopathy care, their conceptualization and measurement remain inconsistent. This scoping review aims to (a) identify the tools most commonly used to assess QoL and HRQoL in adults with genetic cardiomyopathies and (b) map the thematic areas of existing studies, including symptom burden, psychological distress, diagnostic challenges, and the impact of medical and psychological interventions. PubMed, Scopus, and PsycINFO were systematically searched, and the final search was completed in November 2025. Seventeen peer-reviewed studies met the inclusion criteria and were included in this scoping review. The review followed the PRISMA extension for Scoping Reviews and included both quantitative, qualitative and mixed-methods designs. Most studies employed standardized tools such as EQ-5D (N = 5), SF-36/SF36v2 (N = 5), and the Kansas City Cardiomyopathy Questionnaire (N = 3), while others included the Minnesota Living with Heart Failure Questionnaire (N = 2) and disease-specific or ad hoc measures. The most frequently investigated themes included impairments in physical functioning, emotional well-being, symptom burden, psychological distress, and social participation. Several studies showed that patients’ perceived QoL was more closely associated with symptom burden and psychological adjustment than with objective clinical indicators alone. Clinical interventions showed mixed or limited effects on QoL and HRQoL outcomes, even when clinical parameters improved. Qualitative research further emphasized the lived experiences of patients and families, highlighting unmet needs in care. Less commonly addressed findings concerned caregiver perspectives, patient–provider communication, treatment adherence, socioeconomic disadvantage, healthcare costs, productivity loss, and the experiences of patients with rarer cardiomyopathy-related conditions. The results highlight how QoL and HRQoL are central but still inconsistently assessed outcomes in cardiomyopathy research. This review calls for greater conceptual clarity between QoL and HRQoL, greater standardization in measurement tools, broader inclusion of psychosocial variables, and more patient-centred research approaches to better support individuals living with cardiomyopathies. Full article

Background: Cervical cancer remains a significant health issue in Indonesia, where structural barriers, fragmented information, and sociocultural norms continue to hinder timely diagnosis and treatment. Families play a central role throughout the illness journey, yet their perspectives are often overlooked in the development of digital patient navigation systems. This study explored family experiences, caregiving challenges, and expectations for a family-centered digital navigation model, DIVA.ID, by integrating Digital Health frameworks and Family Systems Theory. Methods: A qualitative descriptive approach was employed through semi-structured, in-depth interviews with 18 purposively selected family caregivers of women with cervical cancer at a major referral hospital in West Java. Participants were selected because they were directly involved in daily care, treatment decisions, logistical support, or emotional assistance. Interviews were conducted between August and October 2025 and continued until thematic saturation was reached, as indicated by repetition of categories and the absence of new major codes in the final interviews. Data were analyzed using inductive–deductive content analysis guided by Elo and Kyngäs, with five researchers conducting independent coding, iterative code comparison, consensus meetings, and theoretical mapping. Results: Four main themes emerged: (1) family involvement in decision-making, including collective discussion, shifting authority roles, and patient autonomy; (2) caregiver burden, involving physical exhaustion, psychological distress, social restriction, stigma, financial pressure, and employment disruption; (3) psycho-spiritual coping mechanisms, including emotional sharing, prayer, crying, patience, and surrender to God; and (4) digital healthcare needs, covering BPJS guidance, treatment information, scheduling, communication pathways, shelter support, and mental–spiritual support. Mapping these themes to Digital Health frameworks and Family Systems Theory clarified how DIVA.ID could translate family experiences into practical navigation functions. Conclusions: This study provides empirical foundations for a culturally sensitive, family-centered digital navigation model in Indonesia. Rather than demonstrating effectiveness, the findings identify design requirements for DIVA.ID that should be tested in subsequent feasibility, usability, and intervention studies. Full article

Background/Objectives: Patient experience is increasingly recognised as a key dimension of healthcare quality, yet most tools fail to capture its temporal and processual nature, limiting its contribution to system improvement. This study aimed to demonstrate how a biographical approach to patient experience can generate actionable insights for improving care pathways. Specifically, we sought to: (i) identify and characterise distinct types of prehospital care pathways among patients hospitalised for COVID-19; (ii) identify patient-perceived significant events and safety issues; and (iii) generate structured variables to inform a subsequent quantitative phase. Methods: We conducted semi-structured biographical interviews with 31 patients hospitalised for COVID-19 in two French university hospitals. Data were collected using a life-events calendar (LEC), enabling day-by-day reconstruction of symptoms, healthcare contacts, and decision-making processes. Thematic analysis was performed with multidisciplinary triangulation. The qualitative phase identified three pathway types and the key mechanisms underlying each; these patterns were subsequently confirmed in a separate quantitative follow-up study (n = 312) using state sequence analysis. Results: Three distinct pathway types emerged: short (≤3 days), intermediate (4–9 days), and long (≥10 days). Delayed pathways were associated with repeated false-negative tests, underestimation of severity, and silent hypoxaemia. Across all pathways, patient experience suggested critical system-level failures, including diagnostic delays and inadequate escalation of care. Notably, in many cases, hospitalisation was triggered by a relative rather than a healthcare professional. These findings highlight the role of patient and social context as key components of care pathways. Conclusions: When captured longitudinally, patient experience may provide actionable insights into healthcare system functioning, suggesting structural mismatches between clinical trajectories and care responses. The life-events calendar method offers a replicable framework for transforming patient experience data into clinically and organisationally relevant knowledge. Integrating such approaches into healthcare evaluation could enhance patient safety, improve care coordination, and support more responsive care systems beyond COVID-19. Full article

Background/Objectives: Incorporating parent training into cognitive-behavioral therapy for anxious youth has not been shown to significantly improve outcomes perhaps because these interventions have not addressed potential interfering psychological barriers to implementing parenting changes and rarely offer between-session support. There is growing evidence that Acceptance and Commitment Therapy (ACT) can target these psychological barriers and generate more flexible and adaptive behavioral repertoires in parents of children with a variety of presenting challenges. Methods: Following a pilot trial of “Acceptance and Commitment Therapy for Parents of Anxious Children (ACT-PAC)” a six-week group-based intervention focused on targeting psychological barriers to parenting change using mindfulness and acceptance approaches, we collected qualitative feedback from participants in two post-treatment phases by conducting individual interviews and a focus group with participants that completed the intervention. Results: Analysis of interview responses revealed that parents found ACT principles and processes to be helpful, and many also appreciated the ACT-PAC group setting that allowed parents to recognize their experiences were shared by others and to self-disclose in a non-judgmental space. Feedback from the focus group further provides preliminary evidence that ACT-PAC is acceptable to and feasible for parent participants and suggests modifications such as involving additional caregivers, making resources more readily available, and creative structural changes that may facilitate between-session practice. Conclusions: Results suggest that the group-based intervention can be both maintained and improved for future participants. Limitations to generalizability in light of possible selection bias and the small focus group sample size are addressed. Full article

Emotional well-being has become a central concern in contemporary educational research, particularly in contexts shaped by social and cultural diversity. However, dominant approaches to educational assessment continue to prioritize cognitive outcomes, often overlooking the affective dimensions of children’s everyday experiences. In this context, play emerges as a key yet underexplored process through which emotional well-being is constructed in childhood. This study aimed to analyze the role of play in the configuration of emotional well-being in sociocultural educational contexts from a sociocultural and relational perspective. A qualitative multiple-case study was conducted in two rural schools located in Mapuche territories in southern Chile, involving students, teachers, caregivers, and Mapuche knowledge holders (kimches). Data were generated through semi-structured interviews and focus groups and analyzed using inductive coding procedures supported by qualitative data analysis software. The findings indicate that play operates as a socioemotional ecology through which children participate in collective forms of life, construct relationships, and experience emotional well-being in interaction with others, territory, and culturally meaningful practices. Three interconnected dimensions emerged. First, play was experienced as a relational, territorialized, and culturally situated practice sustained through participation, collective interaction, and intergenerational transmission. Second, emotional well-being emerged through enjoyment, companionship, belonging, and opportunities for social participation. Third, well-being appeared as a situated experience dependent on access to meaningful spaces, material conditions, cultural repertoires, and opportunities for play. Participants also identified tensions associated with technological change, the reduction in free play opportunities, and transformations in community life, while highlighting the potential role of schools in revitalizing culturally significant play practices such as palín and linao. These findings suggest that emotional well-being is not simply an individual psychological state but a relational and sociocultural accomplishment emerging through participation in meaningful play practices. The study contributes to interdisciplinary debates on childhood, emotional well-being, intercultural education, and sociocultural approaches to development by proposing the concept of play as a socioemotional ecology. Full article

Informal waste picking and scrap collection constitute critical yet highly precarious livelihood strategies among economically marginalised women in rural South Africa. This article presents a cross-sectional mixed-methods study, guided by Sen’s Capability Approach as its analytical framework, examining the lived experiences, motivations, and livelihood outcomes of 126 Black African women engaged in scrap collection along the N2 Highway in the Eastern Cape, specifically in Mthatha, Xhora, and Qumbu. The study integrates quantitative descriptive statistics with qualitative thematic analysis derived from structured interviewer-administered questionnaires. The findings indicate that participation in scrap collection is overwhelmingly driven by structural economic constraints, including chronic unemployment, household poverty, and extensive caregiving responsibilities, rather than autonomous occupational choice. The sample is characterised by limited educational attainment, frequently disrupted by poverty, bereavement, early marriage, and early caregiving roles, which collectively constrain access to formal employment opportunities. Participants consistently described scrap collection as physically hazardous, economically insecure, and detrimental to both physical health and psychosocial wellbeing, while remaining indispensable for household survival. Through the lens of the Capability Approach, these conditions reflect severe restrictions in substantive freedoms, particularly in relation to economic security, bodily health and human dignity. Expressions of acceptance are interpreted as manifestations of adaptive preferences formed under conditions of prolonged structural deprivation rather than indicators of genuine agency. The study contributes to informal economy scholarship by demonstrating how intersecting structural inequalities constrain capability sets and limit livelihood trajectories and calls for targeted policy interventions to enhance occupational safety, income security and access to sustainable livelihood alternatives. Full article

Introduction: Increased life expectancy and the growing prevalence of disability have led grandmothers and grandfathers to assume a significant role in the care of grandchildren with disabilities. However, their experiences have been scarcely explored from a qualitative and occupational perspective. Objective: To examine the experiences of grandmothers and grandfathers in relation to their participation in caregiving tasks for grandchildren with disabilities. Methods: A qualitative exploratory study framed within a constructivist–interpretive paradigm was conducted. Eleven grandparents of children with disabilities participated and were selected through criterion-based purposive sampling complemented by snowball recruitment. Data were collected through flexible semi-structured interviews and a field diary and were analyzed using inductive thematic analysis. Results: Three main themes emerged: (1) caregiver time, characterized by constant availability and occupational reorganization; (2) emotional impact, with predominant feelings of satisfaction, fulfillment, and strengthening of the emotional bond; and (3) adaptation to change, described as a progressive process of learning, acceptance, information seeking, and negotiation of family roles. Conclusions: The caregiving experience profoundly transforms the daily lives of grandmothers and grandfathers, constituting a highly demanding yet meaningful occupation. The findings highlight the need to recognize their role within the family system and to incorporate an occupational perspective into the support provided to this population. Full article

Background: Caregivers of long-term care (LTC) residents often face decisional conflict during unplanned hospitalization decisions. This study aimed to adapt and psychometrically validate a modified Decisional Conflict Scale (DCS) for primary family caregivers. Methods: A cross-sectional survey was conducted among 205 caregivers in 20 LTC facilities. Exploratory and confirmatory factor analyses (EFA/CFA) were performed on randomly split subsamples, and structural equation modeling (SEM) examined associations among Decision Antecedents, Decision-Making Process, and Decisional Conflict. Bollen–Stine bootstrap procedures were applied to provide robust estimates under slight deviations from multivariate normality. Given the cross-sectional design and single-sample nature of this study, the SEM findings should be interpreted as theory-informed associations rather than causal effects. Longitudinal or intervention-based studies are needed to establish temporal ordering and determine whether improvements in caregiver readiness and decision-making processes lead to subsequent reductions in decisional conflict. Results: The modified DCS demonstrated strong internal consistency and a single-factor structure (α = 0.98, factor loadings 0.83–0.90). SEM indicated that Decision Antecedents and Decision-Making Process were significantly associated with Decisional Conflict (R² = 0.68). The mediation analysis suggested that the Decision-Making Process partially mediated the relationship between Decision Antecedents and Decisional Conflict. Conclusions: The modified DCS appears to be a reliable and valid instrument for assessing decisional conflict among LTC caregivers. Findings highlight the importance of caregiver readiness, support, and communication in shaping decisional experiences. Given the cross-sectional design and single sample, results should be interpreted as associations rather than causal effects. Future research should replicate these findings in larger, diverse samples and explore short-form versions of the scale. Full article

Background/Objectives: Dental anxiety (DA) is a well-known obstacle affecting dental care in children. Children living in orphanages are a special population with healthcare needs. The aim of the study was to assess DA among children living in orphanages compared to those living with both biological parents. Methods: This frequency-matched case–control study included 61 children living in orphanages in Jeddah city and 122 age- and gender-matched peers living with both parents in Jeddah, Saudi Arabia. Demographic and background data, including medical history, dental visit history, and Adverse Family Experiences (AFEs), were completed by the caregiver. Dental anxiety was assessed subjectively using the self-reported Abeer Children Dental Anxiety Scale (ACDAS) and objectively by the Venham Clinical Anxiety Rating Scale (VCARS). Results: The prevalence of children with DA in the study sample among those living in orphanages was 18%. AFEs were significantly higher among children living in orphanages (96.7% vs. 32%, p < 0.001). ACDAS and VCARS showed fewer children with DA living in orphanages compared to children living with both parents. Logistic regression showed that living in orphanages decreased the adjusted odds ratio (AOR) of dental anxiety according to ACDAS (AOR = 0.36; p = 0.06) and VCARS (AOR = 0.43, p = 0.040). Conclusions: Although children living in orphanages presented with lower DA than those living with both parents, this may point to differences in emotional expression rather than true emotional state. Clinicians should not rely only on behavioral observations when treating institutionalized children. Full article

Patients with neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS) frequently lose the ability to communicate through speech or writing. However, their cognitive and sensory functions are often relatively preserved. In Japan, the traditional method known as kuchimoji (mouth-based character communication) enables character-by-character communication using mouth shapes. This method relies heavily on caregiver skill and is challenging to implement consistently. This study introduces KUCHIMOJI, a Japanese text input system that uses mouth-shape recognition to support independent augmentative and alternative communication (AAC) without caregiver assistance. The system employs a lightweight convolutional neural network (MobileNetV2) to classify six mouth shapes. These shapes correspond to five vowels and a closed-lip state. To accommodate diverse user conditions, a multimodal input framework is designed. It supports three operation modes: facial-image-based signal input, button-based input, and key-based direct input. As an initial feasibility study, experiments with ten healthy participants were conducted to evaluate text entry performance in terms of text entry speed (TES) and miss entry rate (MER). Results indicate that the system achieves average input speeds of 3.86, 5.32, and 11.35 characters per minute (cpm) for the facial-image, button, and key-based modes, respectively. It maintains low error rates (2.96–5.05%). These findings suggest that the system offers a flexible trade-off between speed and accuracy depending on the input modality. The proposed approach provides a practical, low-cost, non-contact communication solution. This underscores its potential forpractical assistive communication applications. Full article

Aim: To evaluate the status of the nutritional management of diet-treated IEM in Brazil from the perspectives of healthcare professionals, patients, and families. Methods: Data were collected through two nationwide digital questionnaires administered to healthcare professionals involved in dietary management (n = 37) and to patients and caregivers (n = 278), addressing professional training, workload, access to resources, treatment adherence, and socioeconomic factors. Results: Healthcare professionals from 20 out of the 26 Brazilian states participated, most of them female (81%) and dietitians (81%). Although more than half had over 10 years of experience, 59% considered their training insufficient to work with IEM. Only 19% reported exclusive dedication to the field, and 54% were the sole professional responsible for dietary prescriptions at their center. Weekly workload dedicated to IEM varied widely. Among the patients and families, phenylketonuria (60.4%) and glycogen storage disease (25.9%) were the most frequent conditions. Higher educational level and longer time since diagnosis were associated with a better understanding of dietary management (p < 0.05). Among patients on protein-restricted diets, most reported regular use of protein substitutes, although 92% reported poor palatability and 36% reported supply problems. Access to special low-protein foods was limited, and over half of the families reported some level of food insecurity. Conclusions: Significant systemic, logistical, and socioeconomic barriers to optimal dietary management of IEM persist in Brazil, highlighting the need for strengthened public policies, professional training, and equitable access to dietary resources. Full article

Background: Understanding the psychological and spiritual needs of family caregivers, including their experiences of death anxiety and levels of death literacy, is essential for delivering holistic palliative care. This study aimed to examine the relationships between death anxiety, spiritual well-being, and death literacy among relatives of patients receiving palliative care in Türkiye. Methods: A cross-sectional correlational study was conducted with 160 relatives of patients receiving treatment in a palliative care unit in Türkiye. The participants had a mean age of 47.56 ± 12.33 years, and 62.5% were male. Data were obtained using the Abdel-Khalek Death Anxiety Scale (ASDA), the Three-Factor Spiritual Well-Being Scale (SWBS), and the Death Literacy Index (DLI). Results: The mean scores were 61.34 ± 17.45 for ASDA, 122.94 ± 15.84 for SWBS, and 96.13 ± 16.36 for DLI. Participants exhibited relatively elevated death anxiety scores, comparatively higher spiritual well-being scores, and moderate death literacy scores within the study sample. Correlation analyses showed that death anxiety was positively associated with spiritual well-being and negatively associated with death literacy, whereas death literacy was positively associated with spiritual well-being. Regression analyses further indicated that spiritual well-being was independently and positively associated with both death anxiety and death literacy, whereas death literacy was independently and negatively associated with death anxiety. Conclusions: The findings suggest that psychosocial, spiritual, and informational dimensions should be considered together in holistic palliative care. Supporting death literacy and spiritual well-being may contribute to better coping with death-related concerns among relatives of patients receiving palliative care. Full article

Background/Objectives: The family constitutes a primary ecological system shaping infant emotional and mental health. Parent responsiveness in particular shapes early regulatory capacities in the developing child. Added contextual stress such as that associated with natural disasters may strain caregiving relationships. Brief, universally accessible parenting interventions offer scalable support for strengthening early relational health and may be useful in contexts of natural disaster-related stress as well as in the general population. This qualitative study examined the perceived impact and contextual relevance of MERTIL (My Early Relational Trust-Informed Learning) for Parents, a brief digital psychoeducational parenting program targeting early relational health, among families raising young children in disaster-affected communities. Methods: Fourteen parents residing in the Hunter New England and Central Coast region of New South Wales, Australia, with young children aged 0–5 years, participated in semi-structured interviews conducted approximately 6 months after completing MERTIL for Parents. Interviews explored lived experiences of parenting in the context of natural disaster (analysed via applied phenomenological methods) and parents’ perceptions of program components that supported everyday caregiving (analysed via reflexive thematic analysis and content analysis). Results: Parents described interconnected personal, relational, and environmental stressors that influenced aspects of the parent–infant relationship. Key retained knowledge from the program included a normalisation of parenting challenges, a strengthened understanding of attachment, trust, safety and repair, and attuned, emotion-focused parenting practices. Conclusions: This pilot study illuminates the lived experience of parenting in disaster prone regions and highlights the potential for this brief, universal digital parenting program to provide support for early relational health in such contexts. Full article

Background: The pivotal role of caregivers in HIV care for older people living with HIV (PLWH) stands in stark contrast to the scarcity of research on their experiences, particularly regarding affiliate stigma. Older PLWH face a unique intersection of HIV-related stigma and ageism, which may place their family caregivers at heightened risk of affiliate stigma. However, the manifestations, sources, and coping strategies related to this stigma remain poorly understood. Methods: The descriptive phenomenological study was conducted between May and June 2025 at an HIV care clinic of a tertiary hospital in Sichuan Province, China. Using purposive sampling, fifteen caregivers of elderly individuals living with HIV were recruited. Data were collected through face-to-face, semi-structured interviews. Results: Four overarching themes and eleven sub-themes were extracted: (1) sources of affiliate stigma—‘Inadequate knowledge of HIV transmission routes’, ‘Ageism’, and ‘Infidelity stigma’; (2) experiences of affiliate stigma—‘Stigma endorsement’, ‘Concealment of a family member’s HIV-positive status’ and ‘Psychological distress’; (3) consequences of affiliate stigma—‘Estrangement among family members’, ‘Substantial caregiver burden’ and ‘Social avoidance’; and (4) coping with affiliate stigma—‘Enhancing knowledge of HIV/AIDS’ and ‘Seeking social support’. Conclusion: This study investigates affiliate stigma among caregivers of older people with HIV. Healthcare providers should recognize this stigma and its negative effects. Effective interventions must be developed to alleviate this burden, thereby improving the welfare of both caregivers and patients. Full article