Search Results (1,554)

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

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

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: 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

If God cares and is present, can God use pain and suffering in my life? Absolutely. Does this mean that God planned, ordained, or designed the pain (or cancer) to be instrumental in my life for some sort of higher spiritual purpose? If so, why? Why does God allow cancer to invade and interrupt one’s life? There are no theologically sound or definitive answers to these questions. Although asking such questions is basic to our humanity, as we will observe in various passages of Scripture, the answers will always remain elusive. Instead of seeking to answer the question “why?”, I will suggest two areas for theological and pastoral reflection with respect to those facing cancer: humility and hope. Enduring cancer, from diagnosis through treatment, requires humility in mind and body before our Creator and before our caregivers. Cancer also provides an opportunity for Christians to embed themselves in the hope of resurrection and new creation. Resurrection hope is also not reduced to hope beyond death but hope that is manifested now through embodied resurrection “signs” and actions of human sacrificial love, both received and practiced by the patient undergoing illness and by the patient’s caregivers, family, and friends. 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/Objectives: Senior nurses in Taiwan shoulder layered responsibilities shaped by professional roles, gendered expectations, and family duty. Although Taiwan faces a persistent shortage of experienced clinical nurses, limited research has explored how long-serving nurses sustain identity and commitment across decades of caregiving. This study examines how senior staff nurses understand their journeys of becoming—and remaining—nurses within a culturally and emotionally complex landscape. Methods: Interviews were conducted between May 2019 and September 2023 in locations chosen by participants, with most sessions face-to-face and others undertaken via video conferencing during COVID-19. This narrative inquiry involved in-depth, multi-session interviews with five female senior staff nurses born in the 1970s to early 1980s. Each participant reflected on her life and career, supported by co-constructed “nursing life lines.” Thematic narrative analysis was conducted using McCormack’s five-lens framework and Riessman’s model, with ethical rigor ensured through reflexive journaling and participant validation. Results: Three overarching themes emerged: (1) inner strength and endurance, highlighting silent resilience and the ethical weight of caregiving; (2) support and responsibility in relationships, revealing the influence of family, faith, and relational duty; and (3) role navigation and professional identity, showing how nurses revisit meaning, self-understanding, and tensions across time. Participants described emotionally powerful moments, identity re-connection, and cultural values that shaped their paths. Conclusions: These narratives offer a relational and culturally embedded understanding of what it means to sustain a career in nursing. Narrative inquiry created space for reflection, meaning-making, and voice in a system where such voices are often unheard. Identity was not static—it was lived, reshaped, and held in story. Full article

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/Objectives: Despite the importance of parent mental health for child health, there are no global prevalence data on parental mental health symptoms when children are hospitalized. We aimed to describe depression and anxiety symptom prevalence and associated factors among parents of hospitalized children. Methods: We conducted this 14-country prospective cohort survey with parents/primary caregivers staying at a nearby Ronald McDonald House^® during their child’s hospital treatment. We used the Hospital Anxiety and Depression Scale to measure depression and anxiety symptoms and validated scales and theory-based questions to measure parent, family, and child covariates. We calculated the prevalence of clinically significant or concerning symptoms of depression and anxiety, and used multivariable regression analyses to examine associations between covariates and outcomes. Results: Among 3350 participants, 1789 (49.7%) reported depression symptoms and 2286 (69.0%) reported anxiety symptoms. Worry about housing and poorer ratings of their child’s health were associated with increased risk of depression symptoms. Poorer rating of the child’s health, living with a partner, and discrimination in daily life were associated with increased risk of anxiety symptoms. Higher levels of self-care, hospital family-centered care, and social support were associated with reduced risk of depression symptoms. Higher levels of self-care and social support were associated with reduced risk of anxiety symptoms. Conclusions: Clinically significant or concerning depression and anxiety symptoms are common among parents of hospitalized children globally. Hospitals should consider offering routine mental health symptom screening and preventative mental health and support services to all parents. 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

Background: Cancer is one of the leading causes of morbidity and mortality worldwide and in Spain. Individuals with cancer are at a higher risk of suicide compared to the general population due to both general and disease-specific risk factors. Objective: To update knowledge on nursing care measures to address the risk of suicide in cancer patients. Methods: A narrative review was conducted by searching PubMed, WOS, Scopus, and CINAHL during February and March 2025. The inclusion criteria comprised original qualitative, quantitative, and/or mixed-methods studies related to the topic of the review. Results: Of the 289 identified studies, 23 were selected. Twelve studies of cancer patients, ten studies of healthcare professionals, and one study of caregivers and survivors were included. Regarding suicide risk factors, eight studies addressed demographic aspects, fifteen socio-economic factors, twenty-one psycho-emotional factors, and seventeen physical factors. Key risk factors included male sex, advanced age, social isolation, lack of social support, hopelessness, and physical deterioration. Seventeen studies highlighted the need for continuous and comprehensive nursing care using validated tools for systematic assessment of suicide risk. Eight emphasised the importance of ongoing training in suicide prevention, which is essential for developing communication skills and improving therapeutic relationships. Five studies underscored the relevance of a holistic approach that addresses the physical, emotional, social, and spiritual dimensions of patient care. Six extended this approach to include family members and caregivers. Conclusions: Suicide risk in cancer patients is associated with multiple risk factors. Emotional support and a comprehensive, continuous nursing approach—based on systematic assessments, specialised training, and a holistic focus—are key to effective suicide prevention. Full article