Search Results (991)

Background: Social and financial services are essential for the inclusion and well-being of people with disabilities (PWDs), who often rely on family caregivers to access these systems. In Saudi Arabia, where disability inclusion is a strategic goal under Vision 2030, understanding caregiver experiences is crucial to identifying service gaps and improving accessibility. Objectives: This study aimed to explore caregivers’ perspectives on awareness, perceived barriers, and accessibility of social and financial services for PWDs in Saudi Arabia. The analysis is grounded in Andersen’s Behavioural Model of Health Service Use and the WHO’s International Classification of Functioning, Disability and Health (ICF) framework. Methods: A cross-sectional survey was conducted with 3353 caregivers of PWDs attending specialised day schools. The survey collected data on demographic characteristics, service awareness, utilisation, and perceived obstacles. Exploratory Factor Analysis (EFA) identified latent constructs, and Structural Equation Modelling (SEM) was used to test relationships between awareness, barriers, and accessibility. Results: Findings reveal that over 70% of caregivers lacked awareness of available services, and only about 3% had accessed them. Key challenges included technological barriers, complex procedures, and non-functional or unclear service provider platforms. Both User Barriers and Service Barriers were negatively associated with Awareness and Accessibility. Awareness, in turn, significantly predicted perceived Accessibility. Caregiver demographics, such as age, education, gender, and geographic location, also influenced awareness and service use. Conclusions: There is a pressing need for targeted awareness campaigns, accessible digital service platforms, and simplified service processes tailored to diverse caregiver profiles. Inclusive communication, decentralised outreach, and policy reforms are necessary to enhance service access and promote the societal inclusion of PWDs in alignment with Saudi Arabia’s Vision 2030. 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

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

Background and Objectives: Specialized nurses play an essential role in managing pulmonary fibrosis. While tele-nursing has the potential to optimize disease management, current evidence regarding its impact remains limited. This study aimed to evaluate a tele-nursing intervention that provided unscheduled access to a specialized nurse via phone or email for both patients and caregivers. Materials and Methods: This was a prospective, single-center, open-label, and pre–post pilot study. Participants and their caregivers were provided with direct access to a specialized nurse, by phone and email, for unscheduled consultations. Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) were collected at baseline and after three months of tele-nursing access. PREMs were assessed using a 10-point Likert scale questionnaire, and PROMs were evaluated using the King’s Brief Interstitial Lung Disease (K-BILD) and the Living with Pulmonary Fibrosis (L-PF) questionnaires. Results: A total of 47 patients with pulmonary fibrosis receiving antifibrotic drugs were enrolled. At three months, 44 patients and 34 caregivers completed the questionnaires. Four patients did not complete the study due to death, lung transplantation, or transition to end-of-life care. No significant changes were observed in PROMs. However, PREMs showed significant improvements, with most scores exceeding 9/10. Patient satisfaction increased by 28% (p < 0.001), and caregiver satisfaction by 30% (p < 0.001). Caregivers of patients who did not complete the study also reported high satisfaction, comparable to that of other caregivers. Conclusions: A pragmatic and affordable tele-nursing program, based on direct phone and email consultations, may enhance patient and caregiver satisfaction in the management of pulmonary fibrosis. Full article

Background: Nemaline myopathy is a rare congenital neuromuscular disease associated with progressive weakness and frequent respiratory complications. In emergency situations, families often serve as the first and only responders. The aim of this study is to explore how parents in Spain care for children with nemaline myopathy during emergency situations, focusing on the clinical responses performed at home and the organizational challenges encountered when interacting with healthcare systems. Methods: A qualitative phenomenological study was conducted with 17 parents from 10 families belonging to the Asociación Yo Nemalínica. Semi-structured interviews were performed via video calls, transcribed verbatim, and analyzed using Giorgi’s descriptive method and ATLAS.ti software (version 24). Methodological rigor was ensured through triangulation, reflexivity, and member validation. Results: Four themes were identified. First, families were described as acting under extreme pressure and in isolation during acute home emergencies, often providing cardiopulmonary resuscitation and respiratory support without professional backup. Second, families managed ambiguous signs of deterioration using clinical judgment and home monitoring tools, often preventing fatal outcomes. Third, parents frequently assumed guiding roles in emergency departments due to a lack of clinician familiarity with the disease, leading to delays or errors. Finally, the transition to the Pediatric Intensive Care Unit was marked by emotional distress and rapid decision-making, with families often participating in critical choices about invasive procedures. These findings underscore the complex, multidisciplinary nature of caregiving. Conclusions: Parents play an active clinical role during emergencies and episodes of deterioration. Their lived experience should be formally integrated into emergency protocols and the continuity of care strategies to improve safety and outcomes. 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: Sexuality is a central aspect of being human, even if people experience it in different ways in various stages of life. Sexuality in older people may be expressed, as well as affection, companionship, touch, and physical contact. However, older peoples’ sexual needs are not properly considered by themselves, caregivers, or healthcare professionals. Reviews on barriers related to identification and satisfaction of sexual needs of people living in nursing home are scarce. In this scenario we intended to summarize the state of evidence regarding sexual need identification and satisfaction among older people living in nursing homes and possible barriers that could limit sexual need identification and satisfaction. Methods: We carried out a narrative review. The included studies responded to the research question, using the following key words: nursing homes, sexuality or sexual need, or sexual behavior, older people. Searched databases included PubMed, Embase, CINAHL, PsycInfo, and Scopus. Results: After searching and screening we included 22 studies, finding three main topics: 1. identification of sexual needs by residents and healthcare personnel attitude and practice; 2. barriers and reasons hindering the identification of sexual needs; and 3. manifestation and satisfaction of sexual needs. Conclusions: The findings showed that nursing homes’ residents have different sexual needs, but there are many organizational, educational, and cultural barriers and negative attitudes of healthcare personnel. Supporting nursing home residents to express their sexual needs is a challenge for the healthcare professionals and managers of nursing homes. Full article

Background/Objectives: This study aimed to explore how stressors and facilitators within the work–family interface (WFI) influence mental health outcomes among farming women in rural Chile. The research sought to identify key relational patterns and contextual determinants shaping psychological well-being in this population. Methods: An exploratory mixed-methods design was employed, involving 41 semi-structured interviews analyzed using grounded theory. Qualitative themes were quantified by calculating the percentage of occurrence per interview, allowing for comparative analysis. Pearson correlation and principal component analysis (PCA) were used to examine associations among WFI dimensions and mental health-related variables. Results: Strong and statistically significant correlations emerged between institutional and community facilitators (r = 0.664, p < 0.01) and between gender facilitators and family workload stressors (r = 0.609, p < 0.01). PCA revealed two distinct patterns: women who rely on institutional support often resist traditional family roles, while others find balance through familial support systems. The gendered distribution of caregiving and productive tasks was a key factor in psychological well-being, with some women reporting physical discomfort linked to triple workloads. Conclusions: The dynamics of the WFI in rural contexts are shaped by both sociocultural and institutional factors. The findings highlight the need for culturally sensitive mental health policies that acknowledge and respond to the lived experiences of farming women. Full article

Objective: To explore the experiences and self-efficacy of parent-caregivers providing care for a child with a tracheostomy tube. Study Design: Parent-caregivers completed surveys and participated in semi-structured interviews about their experiences learning to care for their child with a tracheostomy tube. Survey data were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed thematically through coding. Results: Fifteen parent-caregivers participated in the survey, 13 of whom completed an interview. After receiving a tracheostomy, children were hospitalized a median of 6 months prior to discharge home. At the time of our study, children had been home for a median of 3.5 years. Parent-caregivers felt more prepared to perform routine daily care compared to triaging a change in medical status. Parent-caregiver self-efficacy in performing tracheostomy care skills improved with experience at home. Four themes were identified from interviews: new identity formation, enduring education, child and family biopsychosocial support, and establishing normalcy. Parent-caregivers shared that education was more than just acquiring skills; it also involved discovering diverse ways of learning and building confidence in one’s own abilities to fulfill the many types of roles they serve to successfully care for and keep their child safe while supporting their social and emotional needs as parent-caregivers. Conclusions: Parent-caregivers’ reflections on their experiences provide critical insight into their psychosocial needs and challenges in providing care to children with tracheostomies. Further investigation of lived experiences is vital to shaping a community that can support families of medically complex children. 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