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Caregivers of children with autism spectrum disorder (ASD) often report higher levels of stress and mental health issues. Support services and parent training programs may help buffer the effects of caring for a child with ASD. However, due to the national lack of trained ASD providers and disparity of ASD support resources available in rural areas, caregivers often go without support. A possible solution to reach caregivers in rural areas is web-based interventions. This paper describes an ongoing pilot study examining the feasibility, acceptability, and preliminary effects on caregiver well-being and disruptive child behaviors for a web-based parent training program (Attend Behavior) for caregivers of young children (ages 2–11 years old) with autism spectrum disorder (ASD) living in rural areas (trial registration NCT05554198). The intervention is available on the internet as well as a downloadable app for mobile phones. Participants will be invited to use the intervention program for 12-weeks. Prior to using the program, participants will be asked to take a baseline survey assessing depressive symptoms (PROMIS Depression Short Form-6a), caregiver stress (Parenting Stress Index-Short Form), child disruptive behaviors (Home Situations Questionnaire-ASD and Aberrant Behavior Checklist). After 12-weeks, participants will be asked to complete a post-intervention survey with the same measurement scales plus questions regarding intervention acceptability, appropriateness, and feasibility (Acceptability of Intervention, Intervention Appropriateness Measure, and the Feasibility of Intervention Measure). Participants are also invited to partake in a brief 1:1 interview with a study team member to give further feedback regarding the intervention. Study retention and participant app usage data will be examined. Information generated from this pilot study will be used to inform a future larger scale randomized control trial of Attend Behavior. [ABSTRACT FROM AUTHOR]

Background: Upper gastrointestinal cancers (UGICs) are increasingly prevalent. With a poor prognosis and significant longer-term effects, UGICs present significant adjustment challenges for individuals with cancer and their informal caregivers. However, the supportive care needs of these informal caregivers are largely unknown. This systematic review of qualitative studies synthesises and critically evaluates the current evidence base on the experience of informal caregivers of individuals with UGIC. Methods: A Joanna Briggs Institute systematic review was conducted. Searches were performed in four databases (MEDLINE, PsycINFO, Embase, CINAHL) from database inception to February 2021. Included studies explored experiences of informal caregivers of individuals diagnosed with primary cancer of the oesophagus, stomach, pancreas, bile duct, gallbladder, or liver. Studies were independently screened for eligibility and included studies were appraised for quality by two reviewers. Data were extracted and synthesised using meta-aggregation. Results: 19 papers were included in this review, and 328 findings were extracted. These were aggregated into 16 categories across three findings: (1) UGIC caregiver burden; UGIC caregivers undertake extensive responsibilities, especially around patient diet as digestion is severely impacted by UGICs. (2) Mediators of caregiver burden; The nature of UGICs, characterised by disruptive life changes for caregivers, was identified as a mediator for caregiver burden. (3) Consequences of caregiver burden: UGIC caregivers' experiences were shaped by unmet needs, a lack of information and a general decline in social interaction. Conclusions: The findings of this review suggest the need for a cultural shift within health services. Caregiving for UGIC patients is suggested to adversely affect caregivers' quality of life, similarly to other cancer caregiving populations and therefore they should be better incorporated as co-clients in care-planning and execution by including them in discussions about the patient's diagnosis, treatment options, and potential side effects. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Background: Selective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects. Methods: STRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score ≥ 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1–2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication. Discussion: Results from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population. Trial registration: ISRCTN, ISRCTN15984604. Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021. [ABSTRACT FROM AUTHOR]

Background: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. Methods: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker's appraisal tool. A narrative synthesis approach using Popay's work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members' bereavement experiences were included. We excluded papers studying bereavement through the death of a child. Results: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. Conclusion: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research. [ABSTRACT FROM AUTHOR]

Aim: The aim of this research is to identify the main approaches and domains of palliative care quality assessment through three questionnaires used for this purpose. Design: Systematic review. Methods: The proposed analysis process consists of three stages from 2000 to 2020: (i) massive literature search, (ii) text mining and (iii) systematic reviews carried out on the QLQ C30, Zarit Burden Interview and FAMCARE questionnaires. The Preferred Reporting Items for Systematic Reviews (PRISMA‐P) have guided our research. Results: Sixteen papers were included in our study. The main findings have been summarised using a descriptive narrative synthesis approach. Systematic reviews evidenced that such tools present variable factor structures or latent domains. The results obtained are generally representative of the evidence supporting the factor structure of the QLQ‐C30 in the general cancer population. The factor structure of the Zarit Burden Interview remains ambiguous, although the idea of a unifactorial structure predominates. In the case of FAMCARE, most of the factor structures differ from the initial proposal of Kristjanson. The categorisation of the main subjective assessment approaches could be useful for the construction of a coherent system of indicators to be used in nursing practice. For its part, the variability in the latent dimensionality of the questionnaires analysed could be due to: (i) the characteristics of the sample, (ii) the population studied, (iii) cross‐cultural variability, (iv) the design of the questionnaire and (v) the analysis techniques employed. [ABSTRACT FROM AUTHOR]

Background: The paper deals with older workers and the issue of combining informal care for family members with paid employment, which is increasingly important in the light of socio-demographic changes in society - namely demographic ageing and the lengthening of working life. The topic is highly relevant to the group of non-medical healthcare professions studied, as they combine care in the professional and domestic spheres. Purpose of the research: The aim of the research is to point to gender inequalities in how the combination of formal and informal care impacts the work and personal spheres of (pre-) retirement-age nonmedical healthcare workers. Methods: The article is based on the analysis of 36 qualitative interviews with nonmedical healthcare workers in Czechia. We used thematic analysis and approached the issue of (un)doing gender from a social constructivist perspective. Results: The results suggest that women and men in nonmedical healthcare professions face differences in relation to the double care burden in older age. Women are more likely to be affected by a combination of dual care, which has implications for their workload, financial remuneration, etc., whereas men are under greater pressure to perform at work, which becomes increasingly difficult at older ages. Conclusion: Gendered character of double care has implications for gender inequalities in mental and physical health and for the gender pension gap. [ABSTRACT FROM AUTHOR]

This study aimed to identify differences in caregiver burden related to toileting assistance, and examine the factors associated with the most burdensome aspects of providing toileting assistance. In 2019, a self-administered postal survey was conducted with 743 caregivers of older adults who received subsidies for continence products in Komatsu City, Japan. Both family caregivers and nursing home staff answered questions regarding older adults' urinary/fecal symptoms, toileting assistance, and perceived caregiver burden. Older adults living at home had less need for toileting assistance than those in nursing homes. However, family caregivers experienced more burden than nursing home staff. The most frequent physical burden associated with toileting assistance for family caregivers was urinary/fecal leakage from absorbent incontinence products. This burden was linked to family caregivers providing care at home, using a combination of urinary pads and diapers, and symptoms that caused burdens on caregivers including urinary/fecal incontinence, nocturia, and no desire to urinate. These results suggest that leakage caused by the inappropriate use of urinary pads combined with diapers is a source of caregiver burden. Continence care experts should provide guidance to family caregivers of older adults, particularly those who are underweight and frail, regarding the selection and fitting of absorbent incontinence products. [ABSTRACT FROM AUTHOR]

The objective of this study was to develop a benchmark method to identify best practices in higher education across the country, in relation with management practices of academic productivity gender gaps and their impact on family responsibilities. This paper uses a qualitative approach to collect relevant information from official web pages from sixteen international universities previously selected. All information related to best practices policies implemented in each university was charted and assigned to one of the following categories for further analysis: ranking, gender policies, gender gaps, academic productivity, and childcare responsibilities. Results from this study revealed that the main best practices implemented in the included universities were practices related to harassment prevention, gender equality at college admission, development of protocols, leadership training, scholarships for study and research programs, adequate infrastructure, childcare financial support, flexible work schedules, family leave policies, improvement of the work environment and the development of departments in charge of follow-up and regular assessment of the proposed strategies. [ABSTRACT FROM AUTHOR]

Acute ischemic stroke (AIS) is the most prevalent type of stroke, and due to its high incidence, disability rate, and mortality rate, it imposes a significant burden on the health care system. Amino acids constitute one of the most crucial metabolic products within the human body, and alterations in their metabolic pathways have been identified in the microenvironment of AIS, thereby influencing the pathogenesis, severity, and prognosis of AIS. The amino acid metabolism characteristics in AIS are complex. On one hand, the dynamic progression of AIS continuously reshapes the amino acid metabolism pattern. Conversely, changes in the amino acid metabolism pattern also exert a double-edged effect on AIS. This interaction is bidirectional, dynamic, heterogeneous, and dose-specific. Therefore, the distinctive metabolic reprogramming features surrounding amino acids during the AIS process are systematically summarized in this paper, aiming to provide potential investigative strategies for the early diagnosis, treatment approaches, and prognostic enhancement of AIS. [Display omitted] [ABSTRACT FROM AUTHOR]

Background: Nurses, as the main healthcare workers during the COVID-19 pandemic, were at high risk of contracting the disease. Family caregivers played a vital role in the support and recovery of patients with COVID-19. The experiences of family caregivers of nurses are very important due to the nature of their job. However, little information is available in this field. To this end, the present study aimed to explore the experiences of family caregivers of nurses who recovered from COVID-19. Methods: This descriptive qualitative study was conducted in one of the hospitals in southeastern Iran in 2022. The participants were 12 family caregivers of nurses who recovered from COVID-19 and were selected through purposive sampling. The data were collected through semi-structured interviews and analyzed using conventional content analysis. The Consolidated Criteria for Reporting Qualitative research checklist was used to report the findings. Results: The analysis of the data revealed psychosocial consequences as main theme, three categories and nine subcategories including negative emotions and attitudes (fear of deterioration/death, fear of frequent infection, fear of transmitting infection to others, despair of recovery, Changing attitudes toward the nursing profession), caregiver burden (role conflict, economic pressure) and lack of support, ineffective interactions and isolation (Lack of support from nursing managers and colleagues, ineffective interactions and isolation). Conclusion: Like other caregivers, family caregivers of nurses recovered from COVID-19 experienced psychosocial consequences and a heavy burden of responsibility. However, what differentiates our findings from the results reported in previous studies is the change in caregivers' attitudes toward nursing and regret for their family members being nurses. The lack of support from medical staff and managers for nurses, the condition of nurses frequently contracting COVID-19 due to the nature of their profession, and the fear of transmitting the infection to others due to contact with COVID-19 patients in the workplace expose these caregivers to additional stress and many risks. Thus, these caregivers need more attention and support in similar situations; an issue that seems to have been neglected during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

While there is growing literature on experiences of healthcare workers and those providing unpaid care during COVID-19, little research considers the relationships between paid and unpaid care burdens and contributions. We administered a moral distress survey to healthcare workers in Canada, in 2022, collecting data on both paid and unpaid care. There were no significant differences in the proportion of participants providing unpaid care by gender, with both genders equally affected by certain responsibilities such as reduced contact with family/loved ones. However, men were significantly more distressed about specific unpaid care responsibilities. Unpaid care was not significantly associated with differences in intention to leave work. At work, women were significantly more concerned about patients unable to see family, while men were distressed by others mistreating COVID patients. This study enhances understanding of paid and unpaid care relationships, particularly during crises, and proposes an innovative method for assessing unpaid care burdens. [ABSTRACT FROM AUTHOR]

Background: As with many countries worldwide, Singapore is experiencing a rapidly ageing population. Presentation of older persons for urgent but non-emergent conditions to the Emergency Department (ED) represents a growing group of patients utilising public healthcare emergency services and puts a strain on current ED resources. The medical conditions vary, and resources used has been poorly characterized. Methods: This is a single-center cross-sectional observational study of patients aged 55 to 75 years old who visited the ED with urgent conditions, Patient Acuity Category Scale (PACS) P2 or P3, who were subsequently discharged. The patients visited a public hospital in Singapore on four randomly selected weekdays in April 2023. The utilisation of hospital resources and manpower was studied. A formulated criteria was used to determine the appropriate site of care, such as an Urgent Care Centre (UCC), Primary Care Providers (PCP) clinic or the ED. Results: There were 235 eligible patients during the study period, with a mean age of 65.1 years of which a majority, 183 (77.9%) were allocated to patient acuity category scale P2. Most of the patients were walk-in patients with no referrals (169 (71.9%)). Based on the criteria, the majority of 187 (79.6%) of these patient may be safely managed at an outpatient setting; 71 (30.2%) patients by PCP, 116 (49.4%) patients may be managed by an UCC, with the remaining 48 (20.4%) requiring ED care. Conclusion: Our findings indicate that a significant portion of discharged older ED adults with urgent but non-emergent conditions may be adequately managed at outpatient medical services that are appropriately resourced. More research is needed on healthcare initiatives aimed at developing the capabilities of outpatient medical services to manage mild to moderate acute conditions to optimise ED resource allocation. [ABSTRACT FROM AUTHOR]

Background: N-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined. Methods: SAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another. Discussion: SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: Dementia is a leading factor in the institutionalization of older adults. Informal caregivers' desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers' DI by mining data from an eHealth platform in a high-prevalence dementia country. Methods: Cross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions. Results: Caregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers' perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1–2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86). Conclusions: This study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing. [ABSTRACT FROM AUTHOR]

Informal caregivers of persons with mental disorders encounter various challenges in their role of caregiving. As such, they require support to enable them to cope with the demands of their caregiving. There is comprehensive evidence on the experiences of burden among informal caregivers in mental health; however, there is a limited number of studies that report on the mental health services aimed specifically at supporting informal caregivers in their role. To address this gap, this study aimed to explore the perspectives of the service providers regarding the challenges encountered by informal caregivers and the mental health services available to support these caregivers. Semi-structured interviews were conducted with mental health coordinators at provincial, district, and sub-district level and mental health professionals from a district hospital. Focus group discussions were conducted with primary healthcare supervisors and community health workers in Bushbuckridge municipality, South Africa at participants' workplaces and sub-district offices. Semi-structured interviews and focus group guides with semi-structured questions were used to direct data collection in August 2022–January 2023. All interviews were audio recorded and transcribed verbatim. Reflexive thematic inductive analysis was conducted using NVivo 12 software. Three themes were identified, namely perceived caregiving consequences and related factors, current state of mental health services, and factors affecting delivery of informal caregiver mental health services. The service providers acknowledged the negative consequences faced by informal caregivers. This includes the experience of caregiver burden which was attributed to the uncooperative and violent behaviours exhibited by the mental health care users. The current state of formal and informal community mental health services was described and considered inadequate to meet informal caregivers' needs. Various personal, health system, and contextual factors influencing the provision of caregiver-orientated services were identified. The findings revealed the need for intersectoral collaborations between hospital-based and community-based mental health service providers, and community stakeholders to ensure provision of user-friendly and accessible mental health services for informal caregivers. [ABSTRACT FROM AUTHOR]

Background: Diagnosis with a brain tumor is a critical event in the lives of patients and their families due to poor medical prognoses and complex clinical care. Spiritual care interventions have been known to have meaningful effects in morbid diagnoses and palliative medicine, but their role in the neuro-oncologic patient's experience is poorly understood. This systematic review explores the role of spirituality and its relevance to patient care in the diverse setting of brain tumors. Methods: A comprehensive systematic review was conducted following PRISMA-SR guidelines. PUBMED was queried for studies on spirituality and neuro-oncology. Identified studies included RCTs, interviews, surveys, and case reports that examined spirituality in neuro-oncological clinical care, quality of life, and patient experience. Of 214 articles identified, 21 studies met the inclusion criteria, and the results were narratively synthesized. Results: Spirituality may play a significant role in mental well-being by reconciling existential questions faced by both patients and caregivers, and can serve as a valuable resource to improve mental well-being and reduce rates of palliative caregiver burnout. However, the paucity of studies examining the education and integration of spiritual awareness within the clinical literature warrants further study. Conclusions: While spiritual care interventions may improve the quality of life and mental wellness of patients and their caregivers, it is unclear how spiritual awareness and education should best be implemented. Further research is needed to better understand how key components of spiritual awareness can be integrated into medical education to deepen the patient–physician relationship and improve clinical experiences. [ABSTRACT FROM AUTHOR]

Background: This study explores heart failure (HF) dyadic contextual factors and caregiver burden during acute exacerbation hospitalization and discharge. Methods: It employed a mixed-methods approach, with HF dyads completing questionnaires and semi-structured interviews at a one-week post-discharge outpatient visit. Quantitative tools included the SF-12 Quality of Life, Zarit Burden Interview (ZBI), Bakas Caregiving Outcomes Scale (BCOS), and Self-Care of Heart Failure Index v. 6 (SCHFI). Thematic analysis was conducted on interview data to assess caregiver burden, disease trajectory, comorbidities, caregiving time, and employment status. Results: Twelve HF dyads participated, with caregivers (six female, six male) averaging 65.76 years. The ZBI indicated a low caregiver burden (median score of 15), but qualitative data revealed a higher perceived burden related to social isolation, future fears, and caregiver dependence. Male caregivers reported a lower burden than females. Positive goal congruence was noted in caregiving hours and HF management compliance. HF patients had a 10-year survival prediction of 22.75% per the Charlson Comorbidity Index, with 69% in NYHA class III and an average ejection fraction of 37.7%. Caregivers working full-time and caring for higher NYHA-class patients showed higher ZBI and BCOS scores. Conclusions: The study highlights the need for mixed methods and longitudinal research to understand HF disease trajectory and caregiver burden, emphasizing the importance of including caregivers in HF education and screening for perceived burden to improve outcomes and reduce re-hospitalizations. [ABSTRACT FROM AUTHOR]

Background: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. Methods: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. Results: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. Conclusions: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses. [ABSTRACT FROM AUTHOR]

Background: Musculoskeletal (MSK) injuries and diseases place a significant burden on the health care system. Despite this, research indicates that physician training in the area of MSK medicine has historically been inadequate, with a majority of medical students feeling that their training in MSK medicine is lacking. The goal of this investigation was to evaluate the efficacy of a new preclinical MSK curriculum that was implemented within a nationally accredited allopathic medical program. Methods: Retrospective analysis was completed on five consecutive years (2017–2021) of preclinical MSK curricular data for 549 medical students, including mid and end-of-course examinations and end-of-course student satisfaction surveys. Both parametric and non-parametric methods of analysis were used to examine within and between class differences (P < 0.05). Results: The new MSK curriculum covered 15 of 16 "core or must know" topics in MSK medicine, and academic performance was consistently high over the 5-year period of analysis (final course marks ranged from 76.6 ± 7.1 to 81.4 ± 8.1; failures/year: range from 0 to 4), being equal or above levels of student performance observed for other courses delivered during preclinical studies. Likert data from end-of-course surveys demonstrated that feedback was overwhelmingly positive (overall course satisfaction ranged from a low of 3.07/4.00 to a high of 3.56/4.00) and indicated that students felt that the new preclinical MSK curriculum did effectively support medical student learning and knowledge retention. Conclusion: Results are expected to help advance the current body of knowledge that is dedicated to improving physician learning and knowledge retention in the area of MSK medicine and provides a curricular model that could be used by other nationally accredited medical programs to help enhance MSK learning at the preclinical levels of physician training. [ABSTRACT FROM AUTHOR]

Background: Effective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool. Aims: This study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool. Methods: According to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted. Results: A total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach's alpha of the Chinese version of CBSFC-CC was.96, and the test–retest reliability coefficient was.95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC. Conclusion: The chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China. [ABSTRACT FROM AUTHOR]

Background: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. Methods: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. Results: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. Conclusion: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. Trial registration: ISRCTN14565552 (retrospectively registered). [ABSTRACT FROM AUTHOR]

The economic burden of brucellosis care on patients can lead to significant financial strain, despite partial coverage by medical insurance. However, there is limited research on the out‐of‐pocket costs faced by brucellosis patients. Therefore, our study aimed to investigate the costs and out‐of‐pocket expenses of brucellosis care, specifically examining the varying socioeconomic status of patients in Xinjiang, China. We collected cost and demographic data from 563 respondents and their hospital bills and employed latent variable analysis to assess socioeconomic status. The majority of patients belonged to the middle and lower socioeconomic status categories (85.97%), and they were primarily farmers and herders (82.77%). The median direct cost per brucellosis episode was USD 688.65, with out‐of‐pocket expenses amounting to USD 391.44. These costs exceeded both the 2020 Xinjiang and national per capita health expenditures (USD 233.66 and USD 267.21, respectively). Notably, the overall medical reimbursement rate was 48.60%, and for outpatient costs, it was merely 12.82%. Despite higher out‐of‐pocket costs among high socioeconomic status patients, the percentage of income spent was higher (37.23%) for patients in the lower socioeconomic status group compared to other groups (16.25% and 12.96%). In conclusion, our findings highlight that brucellosis patients are predominantly from the middle and lower socioeconomic status, with high out‐of‐pocket expenses placing them under significant financial pressure. Moreover, there is notable inequity in economic consequences across different socioeconomic status groups. These results call for policy interventions aimed at reducing brucellosis‐related poverty and promoting equitable access to care. [ABSTRACT FROM AUTHOR]

This study aimed to investigate if our web application could be a viable intervention for providing caregivers with information on resilient coping strategies for the reduction of their burden, thereby leading to the alleviation of behavioural and psychological symptoms of dementia (BPSD). We recruited outpatients with dementia and informal caregiver dyads at Nagoya University Hospital from April 2022 to October 2022. The caregivers were asked to have the web application installed on their smartphones during the study period and answer the following two self-administered questionnaires once a month for 3 months: (a) Abe's BPSD Score (ABS), which assesses BPSD, and (b) the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI) score, which measures caregiver burden. Thirteen patients and informal caregiver dyads were enrolled in this study. The caregivers exchanged information on the care of patients with dementia in the virtual community using the web application during the study period. Upon entry, J-ZBI scores were correlated with ABSs (r = 0.65). Linear mixed-effects model revealed the average J-ZBI scores decreased over time with significance (p = 0.013), however, the average ABSs did not change during the study period. This is the first study to show that our web application reduces caregiver burden. However, to confirm the efficacy of our web application, further investigations are required. [ABSTRACT FROM AUTHOR]

Aim: To investigate whether resilience mediates the connection between caregiver burden and hope among caregivers of patients with inflammatory bowel disease (IBD). Design: A cross‐sectional study. Methods: Two hundred patients with IBD were conveniently sampled from two tertiary hospitals in Jiangsu Province, China. The main instruments involved the Zarit Burden Interview, the 10‐item Connor‐Davidson resilience scale, and the Herth Hope Index. We conducted descriptive analysis and Pearson correlations using SPSS 25.0. The PROCESS v3.3 macro analysed the mediating effect. We report the results in line with the STROBE checklist. Results: Caregiver burden was significantly negatively connected with hope and resilience, whereas resilience positively correlated with hope. The mediation role of resilience was significant in the relationship between caregiver burden and hope, with mediating effects accounting for 47.86% of the overall effect. Conclusions: Resilience partially mediates the association between caregiver burden and hope among patients with IBD. This finding highlights the protective role of resilience in undermining caregiver burden and strengthening hope. Implications for Practice: In clinical practice, healthcare providers should perform routine psychological assessments for caregivers of patients with IBD. Furthermore, resilience training should be incorporated into interventions to alleviate caregiver burden and enhance hope. Patient or Public Contribution: None. [ABSTRACT FROM AUTHOR]

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved. [ABSTRACT FROM AUTHOR]

Introduction: Global aging presents socioeconomic and health challenges. Dementia, a growing concern, affects millions of older adults, intensifying the burden on family caregivers. E-health interventions offer hope through technological solutions, although current research is limited. This study evaluated the effectiveness of internet-based or mobile app interventions for family caregivers of older adults with dementia. Methodology: A systematic review with a narrative synthesis was conducted using databases (PubMed, CINAHL, Scopus, LILACS, and PsycInfo) and the bibliographies of retrieved articles, with no restrictions on time or language. Results: The search yielded 2092 results, of which 22 studies met the inclusion criteria, encompassing a total of 2761 family caregivers. Twenty-one different outcomes were evaluated and classified into three main types of interventions: psychoeducational, psychotherapeutic, and multicomponent. Conclusions: The study highlights the importance of internet-based and mobile app interventions in supporting family caregivers of older adults with dementia. These interventions positively affect many aspects of caregiver well-being, suggesting their utility in addressing this group's emotional, social, and self-care needs. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. Methods: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. Results: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. Conclusions: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care. [ABSTRACT FROM AUTHOR]

Respiratory syncytial virus (RSV) is the most common cause of acute respiratory infections in young children. Limited data are available on RSV disease burden in primary care and emergency departments (EDs). This review synthesizes the evidence on population‐based incidence rates of RSV infections in young children (< 5 years) in primary care and EDs. A systematic literature review was performed in PubMed and Embase. Studies reporting yearly population‐based RSV incidence rates in primary care and EDs were included. A total of 4244 records were screened and 32 studies were included, conducted between 1993 and 2019. Studies were mainly performed in high‐income countries (n = 27), with 15 studies in North America and 10 studies in Europe. There was significant variability in study methodology and setting among studies, resulting in considerable variability in reported incidence rates. Incidence rates were higher in primary care—ranging from 0.8 to 330 (median = 109) per 1000 population—compared to EDs (7.5–144.0, median = 48). The highest incidence rates were reported in infants. Additionally, incidence rates were higher in high‐income countries and in studies using laboratory‐confirmed RSV cases compared to studies using bronchiolitis ICD‐codes (non–laboratory confirmed). Our study found that a substantial number of children under 5 years of age attend primary care settings and EDs, every year for RSV infections. Due to the considerable heterogeneity in study methodology, it was impossible to draw definitive conclusions regarding factors explaining differences in reported incidence rates. Additionally, more studies in low‐ and middle‐income countries are recommended. [ABSTRACT FROM AUTHOR]

Background: The Coronavirus disease 2019 (COVID-19) pandemic has significantly affected various aspects of public health. The virus poses a particular threat to individuals with kidney failure undergoing hemodialysis and their caregivers. The present study investigated the experience of family caregivers of individuals undergoing hemodialysis about caring during the COVID-19 pandemic in Iran. Methods: This qualitative study was conducted with 17 family caregivers of individuals undergoing hemodialysis in Bojnurd, Iran using inductive qualitative content analysis. The participants were selected using convenience and purposive sampling method with maximum variation. Semi-structured interviews were used in data collection based on the interview guide. The data were analyzed with MAXQDA10. Results: The results culminated in the identification of a main category of the COVID-19 care burden on caregivers and two generic categories including the COVID-19 Overt (financial/constraining) care burden (subcategories: Non-adherence to Health Protocols, COVID-19 Financial Costs, COVID-19 Restrictions and Hemodialysis Appointments, and Decreased Caregiver Support during the COVID-19 Era), and the COVID-19 Covert (emotional/psychological) Care Burden (subcategories: Caregiver's Loneliness in the Care, Stress of Contracting COVID-19, Psychological Consequences of individuals undergoing hemodialysis Staying at Home, The burden of other Individuals' Expectations of the Caregiver, and Physical and emotional pressure on the Caregiver). Conclusion: Caregivers during the COVID-19 period have experienced both overt and covert care burden. The results of this study can contribute to understanding the experiences of caregivers of individuals with chronic diseases such as kidney failure, in critical conditions like the COVID-19 pandemic, by healthcare teams and devising strategies and programs to support them. [ABSTRACT FROM AUTHOR]

Background: SMA is a hereditary neuromuscular disease that causes progressive muscle weakness and atrophy. Several studies have shown that the burden of SMA is very high at many levels. Functional assessment tools currently used do not completely address the impact of the disease in patients' life. The objective of this qualitative study was to identify aspects of SMA that are relevant to patients and to design items useful for assessment purposes. Results: Five focus group sessions were run during an annual SMA families meeting in Madrid, Spain. Focus groups were composed by parents of SMA type I children, sitter children type II-III, parents of sitter children type II-III, adult patients, and parents of walker children. Two trained facilitators conducted the focus groups using a semi-structured guideline to cover previously agreed topics based on the input of a Scientific and Patient Advisory Committee. The guideline was adapted for the different groups. According to what was communicated by participants, SMA entails a high burden of disease for both patients and their parents. Burden was perceived in physical, psychological, and social areas. Patient's physical domain was the most relevant for participants, especially for parents of non-ambulant children, followed by limitations of motor scales to capture all changes, parents psychological burden, treatment expectations and patient's psychological burden. Ten domains were the main areas identified as impacted by the disease: mobility and independence, fatigue and fatigability, infections and hospital consultations, scoliosis and contractures, vulnerability, pain, feeding, time spent in care, breathing, and sleep and rest. Conclusions: This study confirms the necessity of evaluating other aspects of the disease that are not assessed in the functional motor scale. Measures of other aspects of the disease, such as pain, fatigue, feeding, should be also considered. A patient-reported outcomes instrument measuring such aspects in a valid and reliable way would be very useful. This study generated a list of new items relevant to be systematically measured in the assessment of the impact of SMA on the patients' everyday life. [ABSTRACT FROM AUTHOR]

Background: Lymphatic malformations are vascular developmental anomalies varying from local superficial masses to diffuse infiltrating lesions, resulting in disfigurement. Patients' outcomes range from spontaneous regression to severe sequelae notwithstanding appropriate treatment. The current classification guides, in part, clinicians through the decision-making process, prognosis prediction and choice of therapeutic strategies. Even though the understanding of molecular basis of the disease has been recently improved, a standardized management algorithm has not been reached yet. Results: Here, we report our experience on five children with different lymphatic anomalies of the head and neck region treated by applying a multidisciplinary approach reaching a consensus among specialists on problem-solving and setting priorities. Conclusions: Although restitutio ad integrum was rarely achieved and the burden of care is challenging for patients, caregivers and healthcare providers, this study demonstrates how the referral to expert centres can significantly improve outcomes by alleviating parental stress and ameliorating patients' quality of life. A flow-chart is proposed to guide the multidisciplinary care of children with LMs and to encourage multidisciplinary collaborative initiatives to implement dedicated patients' pathways. [ABSTRACT FROM AUTHOR]

Diabetic wounds are characterized by incomplete healing and delayed healing, resulting in a considerable global health care burden. Exosomes are lipid bilayer structures secreted by nearly all cells and express characteristic conserved proteins and parent cell-associated proteins. Exosomes harbor a diverse range of biologically active macromolecules and small molecules that can act as messengers between different cells, triggering functional changes in recipient cells and thus endowing the ability to cure various diseases, including diabetic wounds. Exosomes accelerate diabetic wound healing by regulating cellular function, inhibiting oxidative stress damage, suppressing the inflammatory response, promoting vascular regeneration, accelerating epithelial regeneration, facilitating collagen remodeling, and reducing scarring. Exosomes from different tissues or cells potentially possess functions of varying levels and can promote wound healing. For example, mesenchymal stem cell-derived exosomes (MSC-exos) have favorable potential in the field of healing due to their superior stability, permeability, biocompatibility, and immunomodulatory properties. Exosomes, which are derived from skin cellular components, can modulate inflammation and promote the regeneration of key skin cells, which in turn promotes skin healing. Therefore, this review mainly emphasizes the roles and mechanisms of exosomes from different sources, represented by MSCs and skin sources, in improving diabetic wound healing. A deeper understanding of therapeutic exosomes will yield promising candidates and perspectives for diabetic wound healing management. [ABSTRACT FROM AUTHOR]

Objective: The COVID-19 pandemic affected neuro-oncological patients and their caregivers regarding tumor care and emotional functioning, including Quality of Life (QoL). This study aimed to understand how COVID-19 affected their psychological state and the relations between patients and health personnel in neuro-oncology. Methods: A cross-sectional study was conducted on neuro-oncological patients and their caregivers. Results: A total of 162 patients and 66 caregivers completed the questionnaire. Altogether, 37.5% of patients perceived a greater risk of contracting COVID-19 compared to the general population. On a 0–10 scale, the patients' tumor-related anxiety score was 5.8, and their COVID-19-related score was 4.6. The caregivers reported 7.7 and 5.5, respectively. QoL was described as at least good in 75% of both patients and caregivers; the caregivers' care burden increased in 22.7% of cases during the pandemic, with no correlation with QoL. Future perception often changed, both in patients and caregivers. In 18% of cases, the cancer treatment schedule was changed, either by patient decision or by medical decision. However, 93.5% of patients were satisfied with their overall care. Conclusions: A considerable proportion of patients and caregivers still perceived the tumor disease as more burdensome than the pandemic, and their future as more uncertain. Such data suggest the need to build a productive alliance between patients and health professionals. [ABSTRACT FROM AUTHOR]

Background and Objectives: Multiple sclerosis is a chronic demyelinating disease of the central nervous system. Individuals with multiple sclerosis may require daily care and support from caregivers due to the disease's progressive and unpredictable nature. However, the role of caregiving is not without its challenges, and caregivers themselves often face significant repercussions in terms of their quality of life, mental health, and stress levels. Our study aims to investigate the level of stress caregivers experience in their everyday life and the way stress affects their quality of life. Materials and Methods: We conducted a multicenter, cross-sectional study from 11 November 2023 to 20 March 2024 in healthcare units in Western Greece. All 96 participants were adult caregivers of patients diagnosed with multiple sclerosis (MS). We assessed caregivers' quality of life and stress levels using the 36-item Short Form Health Survey and Kingston Caregiver Stress Scale, respectively. Non-parametric tests (Spearman's rho test, Kruskal–Wallis and Mann–Whitney tests) were used to identify possible correlations between the aforementioned scales and between stress levels and caregiver characteristics. Results: Caregivers reported high stress, with an average KCSS score of 36.82 ± 0.851. The mean SF-36 physical component summary score (PCS) was 59.59 ± 2.77, whereas the mental component summary score (MCS) was 45.69 ± 2.32. Stress levels in the KCSS were negatively correlated with both PCS and MCS of SF-36 and female gender, education level, monthly income, limits of mobility, and patient's level of dependence were associated with higher levels of stress. Conclusions: Stress was found to be negatively connected with caregivers' quality of life, affecting both physical and mental health. Female caregivers, caregivers with a primary education level and a low monthly income, and caregivers of patients with serious illnesses who rely primarily on daily help were the most affected. [ABSTRACT FROM AUTHOR]

Background: This survey study investigated the types of sources other than medical professionals (e.g., social media) that the caregivers of children with attention-deficit/hyperactivity disorder (ADHD) use to acquire knowledge about ADHD and investigated the association between the use of such information sources and caregiver parenting stress and anxiety in Taiwan. Methods: A total of 213 caregivers of children with ADHD participated in this study. The sources that the caregivers used to acquire knowledge about ADHD other than medical professionals were investigated. Caregiver parenting stress was assessed using the Parenting Stress Index, and caregiver anxiety was assessed using the Beck Anxiety Inventory. The associations of the types of sources used and total number of source use with caregiver parenting stress and anxiety were investigated using multivariate linear regression analysis. Results: The most common source of knowledge other than medical professionals was teachers (55.4%), followed by social media (52.6%), traditional media (50.7%), friends (33.8%), caregivers of other children (21.1%), and family members (18.3%). The caregivers' mean total number of using sources of knowledge about ADHD other than medical professionals was 2.32. Acquiring knowledge about ADHD from social media was significantly associated with caregiver parenting stress. Additionally, acquiring knowledge about ADHD from caregivers of other children was significantly associated with caregiver parenting stress and anxiety, as was the frequency of using sources of knowledge about ADHD other than medical professionals. Conclusion: The caregivers of children with ADHD acquired knowledge about ADHD from multiple sources. Acquiring knowledge about ADHD from social media was significantly associated with caregiver parenting stress. The number of sources of knowledge about ADHD was significantly associated with caregiver parenting stress and anxiety. [ABSTRACT FROM AUTHOR]

Background: Buprenorphine is an effective and safe treatment for opioid use disorder, but the requirement for moderate opioid withdrawal symptoms to emerge prior to initiation is a significant treatment barrier. Case Presentation: We report on two cases of hospitalized patients with severe, active opioid use disorder, in which we initiated treatment with transdermal buprenorphine over 48 h, followed by the administration of a single dose of sublingual buprenorphine/naloxone and then extended-release subcutaneous buprenorphine. The patients did not experience precipitated withdrawal and only had mild withdrawal symptoms. Conclusions: This provides preliminary evidence for a rapid induction strategy that may improve tolerability, caregiver burden, and treatment retention as compared to previous induction strategies. [ABSTRACT FROM AUTHOR]

Proposal: This systematic review aims to comprehensively examine all existing knowledge on psychosocial interventions for family caregivers for ALS patients. Also, the study will present the gaps in knowledge, recommendations for future research, and guidelines for psychosocial interventions that are focused and adapted to the needs of family caregivers of ALS patients. Materials and methods: The systematic review was conducted according to the PRISMA guidelines and identified studies on psychosocial intervention for family caregivers of ALS patients, using five electronic databases: PsychNET, PubMed, EBSCO, PRIMO, and PROQUEST. Seven articles met the criteria and were included in the review. A thematic analysis was conducted to extract major themes. Results: Three major themes emerged from the data: (1) Personal benefits; (2) Interpersonal benefits; and (3) Charting challenges and pathways to improve psychosocial interventions. Conclusions: Based on the findings, practical guidelines were formulated that focus on the group's composition, the facilitator's role, the contents, the relationships within the group, and the opportunities and limitations of online interventions. [ABSTRACT FROM AUTHOR]

Background: This study aimed to investigate the relationship between the severity of autism, emotional and behavioral problems of autistic children, internalized stigma, depressive symptoms, and primary caregiver parental stress. Specifically, we explored the mediating role of internal stigmatization and total difficulties of individuals with autism on parenting stress and depressive symptoms of the primary caregiver. Method: Mothers of 93 children with autism were included in the study. The mothers were given the Beck Depression Inventory (BDI), The Internalized Stigma of Mental Illness Scale (ISMI), the Autism Behavior Checklist, the Parenting Stress Index-Short Form, Strength, and Difficulties Questionnaire -Parent Form (SDQ-P). Results: As a result of our study, the emotional and behavioral problems of the child and the internalized stigmatization felt by the parent played a mediator role in the relationship between the child's autism severity and the parent's stress and depressive symptoms. Conclusions: Our findings highlight that internalized stigmatization and behavioral characteristics of individuals with autism are among the most critical problems for their primary caregivers. These results have important implications for the development of interventions aimed at reducing the internalized stigma experienced by primary caregivers of individuals with autism and for improving their mental health outcomes. [ABSTRACT FROM AUTHOR]

Background: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. Aims: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. Methods: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. Results: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. Conclusion: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults. [ABSTRACT FROM AUTHOR]

Mild cognitive impairment (MCI) confers a higher risk of developing dementia. While largely preserved, instrumental activities of daily living (IADLs) may be affected to varying degrees by MCI. The Memory Support System (MSS) is a curriculum and calendar/note-taking system that has proven effective in sustaining independence in IADLs for individuals with MCI and in protecting mood among care partners. Until recently, the MSS has only been utilized among English- and Spanish-speaking samples. This study investigated the use of a translated and culturally adapted MSS in four Frenchspeaking, community-dwelling participants with MCI and their support partners. Measures of treatment adherence, daily function, self-efficacy for memory, quality of life, mood, anxiety, and caregiver burden were assessed at baseline, treatment end, and eight-week follow-up. By treatment end and follow-up, participants with MCI showed improvement in adherence to the MSS calendar, IADLs, everyday abilities requiring memory and planning, self-efficacy, depression and anxiety symptoms, and quality of life. Care partners showed improvement in quality of life and depressive symptoms, while their caregiver burden and anxiety symptoms generally remained unchanged. Findings suggest that, with appropriate training, Francophones with MCI can and will use the MSS, and that MSS training may contribute to daily functioning and aspects of participant and care partner well-being. [ABSTRACT FROM AUTHOR]

Objectives: This study assesses the frequency of depression, anxiety, and stress in formal and informal caregivers of autistic children in Karachi City, Pakistan. Methods: This cross-sectional study was conducted among caregivers of autistic children in specified centers in Karachi City, Pakistan. There were 255 participants out of which 111 were formal caregivers and 144 were informal caregivers. Depression, anxiety, and stress scale (DASS) was used to collect the data. The chi-square test was used to determine the relationship between the frequency of depression anxiety and stress among the two groups. Results: A total of 76.3% of informal caregivers were suffering from mild depression, 59.3% were moderately depressed, and 76.5% were severely depressed (P<0.01). Similarly, 72.4% had mild anxiety, 68.2% were moderately anxious, and 50.5% were severely anxious (P<0.01). In addition, 75.0% demonstrated mild, 71.1% moderate, 85.7% severe, and 95.0% extremely severe stress (P<0.01). However, there were no significant levels of depression, anxiety, and stress found among formal caregivers. Discussion: Depression, anxiety and stress were more commonly present in parents of autistic children (informal caregivers) as compared to formal caregivers. [ABSTRACT FROM AUTHOR]

Background: Improving the understanding of the post-discharge experiences of family members after their loved ones leave the Intensive Care Unit (ICU) is essential for developing effective follow-up strategies. These strategies are crucial for mitigating potential negative outcomes for both patients and their families. The aim of this study was to explore the lived experiences of family members after the discharge of their loved ones from the ICU. Methods: In September 2023, we conducted a systematic search of qualitative studies across the following databases: CINAHL, MEDLINE, Scopus and Web of Science. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) was used to guide this review. Results: Eight articles met the inclusion criteria. Four themes were identified following evidence synthesis: (1) grappling with a weighty burden; (2) recognizing and confronting adversities along the way; (3) seeking support beyond one's own resources; and (4) addressing comprehensive care requirements. Conclusions: Family members face significant psychological and physical challenges while caring for their loved ones recovering from an ICU stay. Adequate formal and informal help is imperative to provide support both during hospitalization and after discharge. A refined understanding of the distinct requirements and experiences of family members can serve as a strategic framework for informing educational interventions and follow-up programs during the transition from hospital settings to community-based care. This study was not registered. [ABSTRACT FROM AUTHOR]

Introduction: Chronic non-communicable diseases, including diseases of mental origin such as Alzheimer's, affect all age groups and countries. These diseases have a major impact on the patient and their family environment. It is interesting that different questionnaires are measured in the same direction, given that different health questionnaires are used to measure caregiver burden. Objectives: To identify which type of intervention is the most appropriate to improve the health of the primary caregiver in patients with dementia. To understand the role played by the nurse within multidisciplinary teams and to know whether the different questionnaires used in the studies measure caregiver health in the same direction. Methods: A systematic search of the published and gray literature was carried out without restriction of the language used in the studies. Caregiver burden of patients with dementia, receiving an intervention to improve caregiver burden, was assessed. Standardized mean difference was used as the effect size measure, and there were possible causes of heterogeneity in the effect size. Results: In total, 1512 records were found, and 39 articles with 4715 participants were included. We found individual information with an effect of 0.48 (CI95%: 0.18; 0.79; I2 = 0%); group therapy with an effect of 0.20 (CI95%: 0.08; 0.31; I2 = 6%); workshops with an effect of 0.21 (CI95%: 0.01; I2 = 48%) and 0.32 (CI95%: 0.01; 0.54; I2 = 0%) when a nurse intervenes; respite care with an effect of 0.22 (CI95%: 0.05; 0.40; I2 = 66%); individual therapy with an effect of 0.28 (CI95%: 0.15; 0.4; I2 = 68%); and support groups with an effect of 0.07 (CI95%: 0; 0.15; I2 = 78%). Conclusions: The magnitude of the effects of the interventions has been low–moderate. Different instruments are not associated with the magnitude of the effect. The presence of nurses improves the effect of the intervention on caregivers when it is carried out in the form of workshops. [ABSTRACT FROM AUTHOR]

Age-related motor impairments often cause caregiver dependency or even hospitalization. However, comprehensive investigations of the different motor abilities and the changes thereof across the adult lifespan remain sparse. We, therefore, extensively assessed essential basic and complex motor functions in 444 healthy adults covering a wide age range (range 21 to 88 years). Basic motor functions, here defined as simple isolated single or repetitive movements in one direction, were assessed by means of maximum grip strength (GS) and maximum finger-tapping frequency (FTF). Complex motor functions, comprising composite sequential movements involving both proximal and distal joints/muscle groups, were evaluated with the Action Research Arm Test (ARAT), the Jebsen-Taylor Hand Function Test (JTT), and the Purdue Pegboard Test. Men achieved higher scores than women concerning GS and FTF, whereas women stacked more pins per time than men during the Purdue Pegboard Test. There was no significant sex effect regarding JTT. We observed a significant but task- specific reduction of basic and complex motor performance scores across the adult lifespan. Linear regression analyses significantly predicted the participants' ages based on motor performance scores (R² = 0.502). Of note, the ratio between the left- and right-hand performance remained stable across ages for all tests. Principal Component Analysis (PCA) revealed three motor components across all tests that represented dexterity, force, and speed. These components were consistently present in young (21-40 years), middle-aged (41-60 years), and older (61-88 years) adults, as well as in women and men. Based on the three motor components, K-means clustering analysis differentiated high- and low-performing participants across the adult life span. The rich motor data set of 444 healthy participants revealed age- and sex-dependent changes in essential basic and complex motor functions. Notably, the comprehensive assessment allowed for generating robust motor components across the adult lifespan. Our data may serve as a reference for future studies of healthy subjects and patients with motor deficits. Moreover, these findings emphasize the importance of comprehensively assessing different motor functions, including dexterity, force, and speed, to characterize human motor abilities and their age-related decline. [ABSTRACT FROM AUTHOR]

Background: Home mechanical ventilation (HMV) is a treatment method for patients with chronic respiratory failure. HMV is a challenge for both patients and their caregivers. Some studies have shown a higher risk of depression, job loss, or lifestyle disturbance in family members caring for HMV patients. The purpose of the study was to measure caregiver burden, perceived social support, and coping strategies. Methods: In the cross-sectional study, 58 caregivers (65.52% female) of HMV patients treated at five healthcare institutions were surveyed. The questionnaires including patient/caregiver demographic data, the type and duration of MV, the Caregiver Burden Scale (CBS), the Social Support Scale (SSS), and the Brief-COPE questionnaire were applied. For statistical analysis, the Mann‒Whitney U test, the Kruskal‒Wallis H test, Dunn's test, and Spearman correlations were used. Results: In the CBS, a high level of burden was observed mainly in the isolation and disappointment subscales. The female caregivers achieved a higher score for general strain than did the male caregivers (p = 0.023). Differences in the distribution of the isolation (p = 0.028) and disappointment (p = 0.03) variables between the financial situation groups were observed. The older the patient, the lower the burden in the domains of isolation (p = 0.015) and disappointment (p = 0.005) was elicited. Invasive MV was associated with greater burdens of general strain (p = 0.005), isolation (p = 0.001), and disappointment (p = 0.001). A medium total SSS score was shown (74.5 ± 7.56). Caregivers used various coping strategies. The most common were planning, acceptance, and active coping. Self-blame and denial were positively related to several CBS subscales, whereas acceptance of difficult situations and positive reframing were related to lower scores. Conclusions: Caregivers most frequently experienced a medium level of burden. Female caregivers were characterized by higher level of burden. Invasive ventilation increased the burden. Respondents who assessed their financial situations as good, had lower burden in the selected subscales. Using some positive coping strategies may reduce the level of burden. Interventions to ensure that caregivers overcome these burdens should be undertaken. [ABSTRACT FROM AUTHOR]

Background: The demand for mental health services in Australia is substantial and has grown beyond the capacity of the current workforce. As a result, it is currently difficult for many to access secondary healthcare providers. Within the secondary healthcare sector, however, peer workers who have lived experience of managing mental health conditions have been increasingly employed to intentionally use their journey of recovery in supporting others living with mental health conditions and their communities. Currently, the presence of peer workers in primary care has been limited, despite the potential benefits of providing supports in conjunction with GPs and secondary healthcare providers. Methods: This stepped-wedge cluster randomised controlled trial (RCT) aims to evaluate a lived experience peer support intervention for accessing mental health care in primary care (PS-PC). Four medical practices across Australia will be randomly allocated to switch from control to intervention, until all practices are delivering the PS-PC intervention. The study will enrol 66 patients at each practice (total sample size of 264). Over a period of 3–4 months, 12 h of practical and emotional support provided by lived experience peer workers will be available to participants. Scale-based questionnaires will inform intervention efficacy in terms of mental health outcomes (e.g., self-efficacy) and other health outcomes (e.g., healthcare-related costs) over four time points. Other perspectives will be explored through scales completed by approximately 150 family members or carers (carer burden) and 16 peer workers (self-efficacy) pre- and post-intervention, and 20 medical practice staff members (attitudes toward peer workers) at the end of each study site's involvement in the intervention. Interviews (n = 60) and six focus groups held toward the end of each study site's involvement will further explore the views of participants, family members or carers, peer workers, and practice staff to better understand the efficacy and acceptability of the intervention. Discussion: This mixed-methods, multi-centre, stepped-wedge controlled study will be the first to evaluate the implementation of peer workers in the primary care mental health care sector. Trial registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12623001189617. Registered on 17 November 2023, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=386715 [ABSTRACT FROM AUTHOR]

Family caregivers take on a variety of tasks when caring for relatives in need of care. Depending on the situation and the intensity of care, they may experience multidimensional burdens, such as physical, psychological, social, or financial stress. The aim of the present study was to identify and appraise self-assessment instruments (SAIs) that capture the dimensions of family caregivers' burdens and that support family caregivers in easily identifying their caregiving role, activities, burden, and needs. We performed an integrative review with a broad-based strategy. A literature search was conducted on PubMed, Google Scholar, Google, and mobile app stores in March 2020. After screening the records based on the eligibility criteria, we appraised the tools we found for their usefulness for family care and nursing practice. From a total of 2654 hits, 45 suitable SAIs from 274 records were identified and analyzed in this way. Finally, nine SAIs were identified and analyzed in detail based on further criteria such as their psychometric properties, advantages, and disadvantages. They are presented in multi-page vignettes with additional information for healthcare professionals. These SAIs have proven useful in assessing the dimensions of caregiver burden and can be recommended for application in family care and nursing practice. [ABSTRACT FROM AUTHOR]

Only a few studies, mainly qualitative thematic analyses of interviews, have dealt with the psychological experience of parents of children and adolescents with osteogenesis imperfecta (OI), a rare genetic syndrome involving skeletal fragility and increased exposure to bone fractures. The aim of the present study was to evaluate both negative (i.e., parental burden and parenting stress) and positive (i.e., coping strategies and perceived social support) experiences of parents related to their children's disease and behaviour. The participants were 34 parents of children and adolescents with OI who completed a specifically developed online survey assessing their psychological experience with caregiving, their perception of the severity level of their children's condition and any possible behavioural problems experienced by their children. Data analyses showed that 65% of the parents showed a clinical level of caregiver burden and nearly 30% a clinical level of parenting stress. Caregiver burden was related to the perceived severity level of the condition and the externalising problems shown by their children. Concerning the positive aspects of the parents' experience, a high level of perceived social support was connected to a lower level of parenting stress; the same did not happen for caregiver burden. Coping strategies were connected to stress and burden; in particular, a higher level of stress corresponded to a higher level of avoidance, and a higher level of burden corresponded to a higher level of positive attitude. [ABSTRACT FROM AUTHOR]

Background: The rapidly aging global population has increased the demand for caregivers. Many caregivers simultaneously engage in paid employment, and the dual role makes the needs of caregiver employees conceivably more remarkable. However, there is a gap in the literature about the specific needs of caregiver employees. Method: Caregiver employees (n = 1205) across Hong Kong caring for those ≥65 years were recruited for a cross-sectional face-to-face survey from December 2021 to January 2022, to evaluate mental well-being measured by the Short Warwick –Edinburgh Mental Well-being Scale. Univariate and multivariate analyses were conducted; significant variables (p < 0.05) were included in multiple linear regression, along with caregiver-friendly workplace policies' availability, to understand their association with their mental well-being. Findings: The mean score of the Short Warwick–Edinburgh Mental Well-being Scale among caregiver employees in this study was 24.9, with 7.2% indicative of probable clinical depression and 10.0% possible mild depression. In addition, the current study showed that 30.2% of the caregiver employees felt distressed about the caregiving role. Among external factors, family support (measured by the Lubben Social Network Scale) and workplace culture (measured by the Marshall Supervision Subscale) positively correlated with mental well-being with regression coefficients of 0.252 (p < 0.001) and 0.482 (p < 0.001), respectively. In the fully adjusted model, a negative regression coefficient was observed for overall spillover (−0.050, p < 0.001) and Short Warwick–Edinburgh Mental Well-being Scale scores, while positive regression coefficients were observed for overall self-rate (0.041, p < 0.001), Lubben (0.124, p < 0.001), and corporate culture (0.365, p < 0.001). Better Short Warwick–Edinburgh Mental Well-being Scale scores were observed when caregiver-friendly workplace policies were clearly stated than when they were made on a case-by-case discretionary basis. Conclusions: Caregiver-friendly workplace policies may be critical to Hong Kong's sustainable future, both economically and socially, as they ensure a healthy and productive workforce to support an aging population. [ABSTRACT FROM AUTHOR]