A Feasibility Study of Qualitative Methods Using the Zarit Burden Interview in Heart Failure Caregivers.

OBJECTIVES: The primary goal of this study was to identify and understand the burden experienced by informal caregivers of patients with HF at the time of hospital discharge. The researchers aimed to guide future education interventions and promote informal caregiver burden screening. DESIGN: The researchers administered the Zarit Burden Interview (ZBI) as a quantitative tool to assess informal caregiver burden. The ZBI is a standardized questionnaire used to measure the extent of burden experienced by informal caregivers. After administering the ZBI, the researchers conducted semi-structured interviews with five informal caregivers of patients with HF. These interviews were guided by probing questions related to ZBI items that were rated with high levels of burden (3 "quite frequently" or 4 "nearly always"). RESULTS: The quantitative data showed that the informal caregivers' burden scores on the ZBI ranged from 4 to 41. Male informal caregivers tended to report lower burden scores. The non-spouse informal caregiver had the highest burden score at 41. The qualitative analysis of the interviews revealed several themes related to informal caregiver burden, including fear, patient expectations, patient dependence on caregivers, social isolation, and stressors associated with medication changes after discharge. Despite the qualitative insights into specific burden-related issues, the quantitative analysis of the ZBI scores showed that, on average, informal caregivers reported little to no burden at the time of acute exacerbation of HF in the patient. CONCLUSION: The study's findings suggest that while informal caregivers may not report prominent levels of overall burden, they do face specific challenges and stressors, such as social isolation and managing medication changes post-discharge. These findings can inform the development of targeted support and interventions for informal caregivers of patients with HF.

Virtual Reality Combined With Psychoeducation to Improve Emotional Well-Being in Informal Caregivers of Alzheimer's Disease Patients: Rationale and Study Design of a Randomized Controlled Trial.

OBJECTIVES: Care for community-dwelling people with dementia is frequently delegated to relatives, who find themselves in the role of informal caregivers with no practical management knowledge. This situation exposes caregivers to increased risk for emotional wellbeing. The current study aims to test whether the integration of the efficacy of an immersive virtual reality (VR) experience into an online psychoeducational program impacts caregiver empathy and therefore emotional wellbeing. METHODS: One-hundred informal caregivers of mild-to-moderate Alzheimer's disease (AD) patients will be enrolled and randomly assigned to (i) an online psychoeducational program (control arm); or (ii) an online psychoeducational program integrated with VR (experimental arm). VR will consist of 360-degree videos involving the caregivers to an immersive experience of dementia symptoms from the patient's perspective. Before, after the intervention and after 2 months, all participants will complete validated clinical scales for caregiver burden and anxiety (primary outcomes) and sense of competence and dispositional empathy (secondary outcomes). A subsample of 50 participants will also undergo MRI exam, including structural and functional (resting-state and task-functional MRI [fMRI]) sequences. The fMRI task paradigm will use emotional stimuli to evaluate the neural correlate of empathy, by stressing its cognitive and affective components. The main outcome will be the change in the clinical assessment; the secondary outcome will be the change in brain connectivity of networks subserving the empathic and emotional functioning. RESULTS: We expect that the psychoeducational program will decrease anxiety and stress, enabling caregivers to perceive themselves capable of managing AD patients at home, educating them on symptom handling and boosting their cognitive empathy. In the experimental intervention, the VR-based experience will act as an add-on to psychoeducation, leading to greater improvement in the assessed clinical dimensions. VR should, in fact, enable a deeper understanding of disease symptoms and improve caregivers' cognitive empathy. We expect that the experimental intervention will result in deeper comprehension of disease symptoms and further strengthen caregivers' cognitive empathy. At the neural level, we expect to observe increased activation in circuits subserving cognitive empathy and decreased activation in circuits underlying affective empathy. CONCLUSIONS: To the best of our knowledge, this will be the first randomized controlled trial assessing the effect of combining psychoeducational interventions with VR-based experience in caregivers, and assessing both clinical and imaging outcomes. TRIAL REGISTRATION: Registered in ClinicalTrials.gov (NCT05780476).

Impact of Spousal Mental Illness on Healthcare Utilization Among Patients With Gastrointestinal Cancer.

BACKGROUND: Informal caregiving involves increased responsibilities, with financial and emotional challenges, thereby affecting the well-being of the caregiver. We aimed to investigate the effect of spousal mental illness on hospital visits and medical spending among patients with gastrointestinal (GI) cancer. METHODS: Patients who underwent GI cancer surgery between 2013 and 2020 were identified from the IBM Marketscan database. Multivariable regression analysis was used to examine the association between spousal mental illness and healthcare utilization. RESULTS: A total of 6,035 patients underwent GI surgery for a malignant indication. Median age was 54 years (IQR: 49-59), most patients were male (n = 3592, 59.5%), and had a CCI score of ≤ 2 (n = 5512, 91.3%). Of note, in the 1 year follow-up period, 19.4% (anxiety: n = 509, 8.4%; depression: n = 301, 5.0%; both anxiety and depression: n = 273, 4.5%; severe mental illness: n = 86, 1.4%) of spouses developed a mental illness. On multivariable analysis, after controlling for competing factors, spousal mental illness remained independently associated with increased odds of emergency department visits (OR 1.20, 95% CI 1.05-1.38) and becoming a super healthcare utilizer (OR 1.37, 95% CI 1.04-1.79), as well as 12.1% (95% CI 10.6-15.3) higher medical spending. CONCLUSION: Among patients with GI cancer spousal mental illness is associated with higher rates of outpatient visits, emergency department visits, and expenditures during the 1-year postoperative period. These findings underscore the importance of caregiving resources and counseling in alleviating caregiver burden, thereby reducing the overall burden on the healthcare system.

Development and its reliability and validity of the Knowledge, Attitude and Practice Scale for Informal Caregivers of Pressure Injury Patients. / åŽ‹åŠ›æ€§æŸä¼¤æ‚£è€ éžæ­£å¼ç §é¡¾è€ çŸ¥ä¿¡è¡Œé‡è¡¨çš„ç¼–åˆ¶åŠä¿¡æ•ˆåº¦æ£€éªŒ.

OBJECTIVES: There is a lack of scientifically validated tools to measure the knowledge attitude and practice (KAP) of informal caregivers for patients with pressure injury (PI). This study aims to develop a KAP Scale for Informal Caregivers of PI Patients and to evaluate its reliability and validity. METHODS: Based on the KAP theory framework and relevant literature, an initial pool of items was created through expert brainstorming sessions. The initial scale was formed after a Delphi expert consultation and a preliminary survey. From April to October 2023, a convenient sample of informal caregivers for PI patients was recruited from an inpatient department of the Third Xiangya Hospital of Central South University, as well as its associated community and nursing homes. The first round included 186 participants, and the second round included 213 participants, who were used for item analysis and reliability and validity testing. After a 3-week interval, 20 participants from the initial group were randomly selected for a retest to assess the test-retest reliability of the scale. RESULTS: The KAP Scale for informal caregivers of PI patients consists of 3 dimensions with 19 items. The overall internal consistency (Cronbach's α) of the scale was 0.916. The item-level content validity index (I-CVI) ranged from 0.826 to 1.000, and the scale level-content validity index/average (S-CVI/Ave) was 0.94. Exploratory factor analysis extracted 3 common factors, accounting for 64.643% of the total variance. Confirmatory factor analysis showed that the model fit the data well, with χ2/df=2.54, root mean square error of approximation (RMSEA)=0.085, comparative fit index (CFI)=0.920, and standardized root mean square residual (SRMR)=0.059. CONCLUSIONS: The KAP scale for informal caregivers of PI patients demonstrates good reliability and validity and can be used to assess the KAP levels of informal caregivers regarding PI.

Place-based, intersectional variation in caregiving patterns and health outcomes among informal caregivers in the United States.

Introduction: Informal caregiving is a critical component of the healthcare system despite numerous impacts on informal caregivers' health and well-being. Racial and gender disparities in caregiving duties and health outcomes are well documented. Place-based factors, such as neighborhood conditions and rural-urban status, are increasingly being recognized as promoting and moderating health disparities. However, the potential for place-based factors to interact with racial and gender disparities as they relate to caregiving attributes jointly and differentially is not well established. Therefore, the primary objective of this study was to jointly assess the variability in caregiver health and aspects of the caregiving experience by race/ethnicity, sex, and rural-urban status. Methods: The study is a secondary analysis of data from the 2021 and 2022 Behavioral Risk Factor Surveillance System (BRFSS) from the Centers for Disease Control and Prevention. Multivariable logistic regression or Poisson regression models assessed differences in caregiver attributes and health measures by demographic group categorized by race/ethnicity, sex, and rural-urban status. Results: Respondents from rural counties were significantly more likely to report poor or fair health (23.2% vs. 18.5%), have obesity (41.5% vs. 37.1%), and have a higher average number of comorbidities than urban caregivers. Overall, rural Black male caregivers were 43% more likely to report poor or fair health than White male caregivers (OR 1.43, 95% CI 1.21, 1.69). Urban female caregivers across all racial groups had a significantly higher likelihood of providing care to someone with Alzheimer's disease than rural White males (p < 0.001). Additionally, there were nuanced patterns of caregiving attributes across race/ethnicity*sex*rural-urban status subgroups, particularly concerning caregiving intensity and length of caregiving. Discussion: Study findings emphasize the need to develop and implement tailored approaches to mitigate caregiver burden and address the nuanced needs of a diverse population of caregivers.

The effect of targeted palliative care interventions on depression, quality of life and caregiver burden in informal caregivers of advanced cancer patients: A systematic review and meta-analysis of randomized controlled trials.

OBJECTIVE: To investigate the efficacy of targeted palliative care interventions on depression, quality of life and caregiver burden in informal caregivers of advanced cancer patients, along with the consequences of various intervention types. DESIGN: This study performed a comprehensive review and a meta-analysis of randomized controlled trials. METHOD: An extensive search was carried out across eight databases, namely, PubMed, Embase, CLNAHL, PsyclNFO, Cochrane, VIP, CNKI, and WANFANG, spanning from the inception of the library to May 4, 2024. Two examiners independently screened the articles and extracted the data according to the eligibility criteria formulated in accordance with the PICOS principles. The meta-analysis was conducted utilizing the StataCorp (version 16.0), estimating the impacts of the interventions through the computation of the standardized mean difference (SMD) and the 95 % confidence interval (CI). Sensitivity analysis was carried out using a one-way-out method. Egger's test and the Duval and Tweedie trim-and-fill methods were used to explore the potential publication bias. The Cochrane risk-of-bias tool was used to evaluate the methodological quality of the included studies, and the overall quality of evidence was evaluated using the GRADE method. RESULTS: This study pooled 16 RCTs (including 2046 informal caregivers) that were published from 2007 to 2023. The meta-analysis results indicated that the targeted palliative care interventions significantly improved depression (SMD = -0.74, 95 % CI: [-1.25, -0.23], P < 0.01) and quality of life (SMD = 0.63, 95 % CI: [0.08, 1.17], P = 0.03), though not in terms of caregiver burden (SMD = -0.33, 95 % CI: [-0.95, 0.29], P = 0.30) among informal caregivers of advanced cancer patients. Analysis of the subgroups revealed a correlation between short-term interventions, under three months, and the improvement of depression. Strategies focused solely on caregivers have proven effective in alleviating depression. Interventions utilizing offline methods have been shown to not only lower depression levels but also improve the quality of life for caregivers. CONCLUSIONS: The targeted palliative care interventions effectively improved informal caregivers' depression and quality of life, yet they fail to markedly lessen the caregiver burden. To better support informal caregivers, interveners ought to adopt personalized strategies based on comprehensive consideration of the duration, format, and delivery methods of the interventions. Simultaneously, further exploration and effort from scholars are necessary to enhance the accessibility of palliative care services, and to effectively incorporate academic research findings into clinical practice. REGISTRATION: CRD42023475620.

An Integrative Pediatric Oncology Program Addressing Parents' Quality of Life-Related Concerns.

BACKGROUND: Parents of children with cancer face bio-psycho-social-spiritual concerns which can significantly reduce quality of life (QoL). We examined the impact of an integrative oncology (IO) intervention on QoL-related concerns among parents of children in a pediatric hematology-oncology department. MEASURES: The study was prospective, controlled, nonrandomized and patient-preferenced. Parents of children recently (≤6 weeks) diagnosed with cancer were assessed using the measure yourself concerns and wellbeing (MYCaW), Edmonton Symptom Assessment Scale (ESAS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Parents in both groups were reassessed after three weeks. INTERVENTION: An IO consultation was provided, with training in daily relaxation-breathing and manual treatments, and guidance on herbal medicine. OUTCOMES: Of 68 parents consenting to participate, 37 (54%) underwent the intervention with 31 serving as controls. Multivariate analysis found the IO intervention group to contain more Hebrew-speakers (OR=5.96, 95% CI=1.3-27.3, P=0.022); females (OR=5.23, 95% CI=1.1-24.8, P=0.038); and report pain (OR=1.2, 95% CI=1.0-1.4, P=0.045) and impaired appetite on ESAS (OR=1.23, 95% CI=1.01-1.48, P=0.034) when compared to controls. Only the intervention group showed improved baseline-to-3-week scores for physical functioning (P<0.001), cognitive functioning (0=0.018) and fatigue on EORTC (P<0.001); and for ESAS appetite (P<0.001) and anxiety (P=0.02). ESAS sleep increased only in controls (P=0.029). CONCLUSIONS/LESSONS LEARNED: IO interventions in pediatric hematology-oncology addressing QoL-related concerns among parents are feasible, potentially increasing predominantly physical symptoms and functioning. Further research is needed to confirm these "real-world" clinical outcomes, and the role of IO in "Caring for the Caregiver".

Look on the bright side: the relation between family values, positive aspects of care and caregiver burden.

Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care.

The impact of social isolation and loneliness on the well-being of carers of a person with dementia in aotearoa New Zealand.

Dementia is a leading cause of disability, and as the population ages, there will be a greater need for friends and family to care for people with Dementia. Unfortunately, informal care for a person with dementia is associated with poor psychological and physical health and lower quality of life of the caregiver. The aim of the present study was to understand how to best support caregivers within their communities by examining their experience of loneliness, isolation, and their relationship with well-being. The study used a representative sample of the New Zealand population in terms of ethnicity, age, gender, education, and income and asked people if they were a primary caregiver of a person with Alzheimer's Disease or related disorder. Both loneliness and isolation were linked to overall well-being; however, loneliness was a stronger predictor of satisfaction with relationships and feeling part of one's community. The findings highlight the importance of examining the multi-factorial constructs of social connectedness and question research attributing loneliness solely to reduced social involvement. As such, interventions for caregivers of a person with dementia need to target feelings of loneliness as well as their social isolation.

A systematic review and meta-analysis of randomized controlled trials to reduce burden, stress, and strain in informal stroke caregivers.

OBJECTIVES: To understand the nature and effectiveness of interventions aimed at improving informal stroke caregiver burden, stress, and strain. DATA SOURCES: In line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, a systematic search of CENTRAL, CINAHL, MEDLINE, Embase, APA PsycInfo, and Web of Science was conducted in May 2022. REVIEW METHODS: Studies were eligible if they included an intervention designed for informal stroke caregivers, reported on caregiver burden, strain, or stress, were published in English, and used a randomized controlled trial design. An updated search was conducted in June 2024. The methodological quality of studies was appraised using the Cochrane risk-of-bias tool for randomized trials. The data were pooled, and a meta-analysis was completed for caregiver burden and strain outcomes. RESULTS: Nineteen studies met inclusion criteria and were meta-analyzed. Interventions ranged from 4 days to 12 months. Most studies incorporated educational and/or support components. Meta-analyses revealed nonsignificant effects on caregiver burden or strain. Significant between-group differences for caregiver strain and burden were, however, found in seven studies. CONCLUSION: Limited studies, small sample sizes, and conflicting results made definitive conclusions on the most effective intervention characteristics for improving caregiver outcomes difficult. Of the 19 studies, seven found significant between-group differences for caregiver outcomes postintervention, and these tended to incorporate educational components and comprised between seven and nine sessions. Further high-quality research is required to identify optimal format, duration, and frequency for improving caregiver outcomes.

Percepções de cuidadoras informais sobre motivações, necessidades e benefícios do cuidado para o idoso dependente / Perceptions of informal caregivers about motivations, needs, and benefits of care for dependent older adults

Resumo O cuidador informal presta cuidados permanentes ou regulares a pessoas idosas em situação de dependência, sem remuneração. Objetivou-se identificar as percepções de cuidadores informais sobre motivações, necessidades e benefícios do cuidado ao idoso dependente. Estudo qualitativo realizado com 10 cuidadoras informais portuguesas, a partir de um instrumento com questões sobre o cuidado prestado ao idoso e suas percepções sobre o exercício dessa função. Os resultados revelaram como motivações para o cuidado: relação de proximidade e confiança, dever de cuidar, familiar mais disponível, proximidade da residência, inexistência de vagas e elevado custo das instituições de acolhimento e desejo do idoso permanecer na sua habitação. Os principais cuidados aos idosos são: hidratação, higiene, alimentação, administração terapêutica, companhia, apoio emocional, conforto, entretenimento, promoção da autonomia e dignidade. As necessidades identificadas pelas cuidadoras foram: apoio domiciliário, da segurança social e da entidade empregadora do cuidador, ajuda financeira, suporte psicológico e capacitação para cuidar do idoso. Os benefícios do cuidado informal para o idoso dependente apontados foram: celeridade do apoio familiar, segurança física e emocional, afeto e companheirismo. Este estudo dá voz a cidadãos cruciais.

Abstract The informal caregiver provides non-remunerated permanent or regular care to dependent older adults. This qualitative study aimed to identify the perceptions of informal caregivers about motivations, needs, and benefits of caring for dependent older adults. It was conducted with ten Portuguese informal caregivers, based on an instrument with questions about the care provided to older adults and their perceptions about performing this role. The results revealed the following motivations for care: proximity and trust relationship, duty of care, more available family members, home proximity, lack of vacancies, high cost of shelter institutions, and older adults' desire to remain in their homes. The primary care activities for older adults are hydration, hygiene, food, therapeutic administration, companionship, emotional support, comfort, entertainment, and promoting autonomy and dignity. The needs identified by the caregivers were home, social security, and the caregiver's employer support, financial help, psychological support, and training to care for the older adults. The benefits of informal care for dependent older adults were prompt family support, physical and emotional security, affection, and companionship. This study gives voice to crucial citizens.

Effectiveness of psychological interventions for reducing depressive symptomatology and overload and improving quality of life in informal caregivers of non-institutionalized dependent elderly: a systematic review.

Introduction: The phenomenon of aging is distinguished by profound life transformations, with the most dependent group being constituted by elderly individuals. The responsibility for their care primarily falls on the figure of the informal caregiver. The scarcity of time, the stress associated with caregiving, the financial, work-related, and personal difficulties it entails, make it a collective with high probabilities of experiencing various psychological disorders. Interventions that have shown the best results are those of multiple components, composed of various techniques that seek to adapt to the reality of the informal caregiver. Method: The purpose of this study is a systematic review of effective interventions on depressive symptoms, emotional wellbeing, burden, or quality of life in informal caregivers of non-institutionalized dependents from 2018 to the present. A search was conducted in November 2023, on Pubmed, Pubmed Central, Proquest, and Scielo. The final review was conducted on 11 articles. Results: The results indicate that multiple component interventions including cognitive behavioral techniques and psychoeducation in combination with stress coping techniques and social support are more effective on depressive symptoms, burden, quality of life, and increasing the social support network. Discussion: Results on web-based programs demonstrate their efficacy and effectiveness, but require a greater number of trials to adjust their methodological quality and content to the idiosyncrasies of the informal caregiver.

Using large language model (LLM) to identify high-burden informal caregivers in long-term care.

BACKGROUND: The rising global elderly population increases the demand for caregiving, yet traditional methods may not fully assess the challenges faced by vital informal caregivers. OBJECTIVE: To investigate the efficacy of Large Language Model (LLM) in detecting overburdened informal caregivers, benchmarking against rule-based and machine learning methods. METHODS: 1,791 eligible informal caregivers from Southern Taiwan and utilized their textual case summary reports for the LLM. We also employed structured questionnaire results for machine learning models. Furthermore, we leveraged the visualization of the LLM's attention mechanisms to enhance our understanding of the model's interpretative capabilities. RESULTS: The LLM achieved an Area Under the Receiver Operating Characteristic (AUROC) curve of 0.84 and an Area Under the Precision-Recall Curve (AUPRC) of 0.70, marking an 8% and 14% improvement over traditional methods. The visualization of the attention mechanism accurately reflected the evaluations of human experts, concentrating on descriptions of high-burden descriptions and the relationships between caregivers and recipients. CONCLUSION: This research demonstrates the notable capability of LLM to accurately identify high-burden caregivers in Long-term Care (LTC) settings. Compared to traditional approaches, LLM offers an opportunity for the future of LTC research and policymaking.

Understanding and alleviating informal caregiver burden through the development and validation of a caregiver strain index-based model in Taiwan.

BACKGROUND: Quantifying the informal caregiver burden is important for understanding the risk factors associated with caregiver overload and for evaluating the effectiveness of services provided in Long-term Care (LTC). OBJECTIVE: This study aimed to develop and validate a Caregiver Strain Index (CSI)-based score for quantifying the informal caregiver burden, while the original dataset did not fully cover evaluation items commonly included in international assessments. Subsequently, we utilized the CSI-based score to pinpoint key caregiver burden risk factors, examine the initial timing of LTC services adoption, and assess the impact of LTC services on reducing caregiver burden. METHODS: The study analyzed over 28,000 LTC cases in Southern Taiwan from August 2019 to December 2022. Through multiple regression analysis, we identified significant risk factors associated with caregiver burden and examined changes in this burden after utilizing various services. Survival analysis was employed to explore the relationship between adopting the first LTC services and varying levels of caregiver burden. RESULTS: We identified 126 significant risk factors for caregiver burden. The most critical factors included caregiving for other disabled family members or children under the age of three (ß = 0.74, p < 0.001), the employment status of the caregiver (ß = 0.30-0.53, p < 0.001), the frailty of the care recipient (ß = 0.28-0.31, p < 0.001), and the behavioral symptoms of dementia in care recipients (ß = 0.28-2.60, p < 0.05). Generally, caregivers facing higher burdens sought LTC services earlier, and providing home care services alleviated the caregiver's burden. CONCLUSION: This comprehensive study suggests policy refinements to recognize high-risk caregivers better early and provide timely support to improve the overall well-being of both informal caregivers and care recipients.

Assisted peritoneal dialysis in Europe: a strategy to increase and maintain home dialysis.

Peritoneal dialysis (PD) is a form of kidney replacement therapy with the major advantage that it can be performed at home. This has a positive impact on patients' autonomy and quality of life. However, the dialysis population is ageing and physical and/or cognitive impairments are common. These limitations often form a barrier to PD and contribute to the low incidence and prevalence of PD in Europe. Assisted PD can be a solution to this problem. Assisted PD refers to a patient being assisted by a person or device in performing all or part of their dialysis-related tasks, thereby making PD more accessible to elderly but also younger frail patients. In this way, offering an assisted PD program can help lower the threshold for initiating PD. In this review, we provide an overview of the epidemiology of assisted PD in Europe, we discuss the different categories and clinical outcomes of assisted PD, and we present how assisted PD can be implemented in clinical practice as a possible strategy to increase and maintain home dialysis in Europe.

Dyadic relationships between informal caregivers and older adults with chronic heart failure: A systematic review and meta-synthesis.

AIM: To synthesise the qualitative evidence on dyadic relationships between informal caregivers (ICs) and older adults with chronic heart failure (HF). METHODS AND RESULTS: A systematic review and meta-synthesis were conducted. Eight databases were searched for English peer-reviewed studies and grey literature published from inception to 27 February 2024. Qualitative and mixed-method studies involving older adults ≥ 55 years old with chronic HF and discussing patient-caregiver relationships in community settings were included. Data were synthesised using Sandelowski and Barroso's 2-step framework. A meta-summary was developed using thematic analysis, and findings were synthesised using the Theory of Dyadic Illness Management. Twenty-four studies from 2008 to 2024 were included (n = 580 participants). The meta-summary consisted of four themes and nine subthemes: (1) Characteristics of dyad relationships, (2) How both parts of the dyad care for each other, (3) Chronic HF and dyad relationships, (4) Knowledge of managing chronic HF. These were reorganised into the meta-synthesis: dyadic appraisal, dyadic management behaviours, dyadic health, contextual factors affecting dyadic relationships and management behaviours, and illness management as a dyadic phenomenon. CONCLUSION: Investigating relationship dynamics and their impact on dyads and chronic HF self-care is vital. Where possible, healthcare providers should prioritise dyadic care when caregivers are involved and deliver individualised care to improve patient and caregiver outcomes. Assessing and optimising dyadic relations, addressing individual perceptions and needs as part of clinical care, and before implementing self-care interventions in research may help ensure that self-care is appropriately tailored and would not be hindered by relationship conflicts.

Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults.

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.

Artificial Intelligence Support for Informal Patient Caregivers: A Systematic Review.

This study aims to explore how artificial intelligence can help ease the burden on caregivers, filling a gap in current research and healthcare practices due to the growing challenge of an aging population and increased reliance on informal caregivers. We conducted a search with Google Scholar, PubMed, Scopus, IEEE Xplore, and Web of Science, focusing on AI and caregiving. Our inclusion criteria were studies where AI supports informal caregivers, excluding those solely for data collection. Adhering to PRISMA 2020 guidelines, we eliminated duplicates and screened for relevance. From 947 initially identified articles, 10 met our criteria, focusing on AI's role in aiding informal caregivers. These studies, conducted between 2012 and 2023, were globally distributed, with 80% employing machine learning. Validation methods varied, with Hold-Out being the most frequent. Metrics across studies revealed accuracies ranging from 71.60% to 99.33%. Specific methods, like SCUT in conjunction with NNs and LibSVM, showcased accuracy between 93.42% and 95.36% as well as F-measures spanning 93.30% to 95.41%. AUC values indicated model performance variability, ranging from 0.50 to 0.85 in select models. Our review highlights AI's role in aiding informal caregivers, showing promising results despite different approaches. AI tools provide smart, adaptive support, improving caregivers' effectiveness and well-being.

A perceção do cuidador informal sobre a hospitalização de familiares com cancro / La percepción del cuidador informal sobre la hospitalización de familiares con cáncer / The informal caregiver´s perception of the hospitalization of familymembers with câncer

Introducción: Los pacientes oncológicos con necesidadde cuidados paliativos continúan internados en serviciosquirúrgicos, donde las enfermeras están preparadas paracuidar al paciente quirúrgico y no para atender sus necesidadespaliativas y las de su familia. Surge la necesidad de cambio,en el cual la familia debe involucrarse en el cuidado.Objetivos: Comprender la percepción de los cuidadoresfamiliares sobre las intervenciones de enfermería en elcuidado de pacientes oncológicos con necesidades de cuidadospaliativos; describir las percepciones de los familiares sobreel apoyo y la disponibilidad de los enfermeros.Metodología: Estudio cualitativo, mediante entrevistasemiestructurada, aplicada a 10 familiares de pacientesoncológicos con necesidad de cuidados paliativos, internadosen un servicio de cirugía, cuyos resultados fueron analizadosmediante análisis de contenido.Resultados: Los familiares entrevistados consideran que ladinámica hospitalaria está centrada en la curación y que nofueron atendidos por las enfermeras, por lo que no hay interésen su proceso vivencial y vivencial. Conclusión: Identificamosfactores facilitadores y obstaculizadores percibidos por losfamiliares cuando su pariente fue hospitalizado. Creemosque los resultados de este estudio indican que es necesarioun cambio en la práctica de enfermería, tanto en la relaciónde ayuda como en el propio cuidado de enfermería, siempreteniendo en cuenta que también se debe cuidar a la familia.(AU)

Introduction: Cancer patients in need of palliative care continueto be admitted to surgical services, where nursesare prepared to take care of the surgical patient andnot to meet their palliative needs and those of theirfamily. Thus, the need for change emerges, in whichthe family should be involved in the care and also beconsidered as a care-receiving unit. Therefore, it ispertinent for nurses to focus their care on the patient-family dyad in a structured and oriented manner forfamily-oriented problem-solving.Objectives: To understand the perception of familycaregivers about nurses' interventions in caring forcancer patients with palliative care needs; describefamily members 'perceptions of nurses' support andavailability.Method: A qualitative study using a semi-structuredinterview with ten relatives of cancer patients in needof palliative care admitted to a surgical service. Theresults were analyzed through content analysis.Results: Participants considered that the hospitaldynamics are centered on healing and that they werenot cared for by nurses, thus not having interest in theirexperiential and existential process. Conclusion: Weidentified facilitating and hindering factors perceivedby the family when a sick member was hospitalized We believe that the results of this study indicate that achange in nursing practice is necessary, both in terms ofhelping relationships and in nursing care itself, alwaysbearing in mind that the family must also be cared for.(AU)

Introdução: Os doentes oncológicos com necessidadede cuidados paliativos continuam a ser internadosem serviços cirúrgicos, onde os enfermeiros estãopreparados para cuidar do doente cirúrgico e nãopara atender as suas necessidades paliativas e as dasua família. Emerge a necessidade de mudança, emque a família deve ser envolvida nos cuidados.Objetivos: Compreender a perceção dos cuidadoresfamiliares sobre as intervenções do enfermeiro nocuidar do doente oncológico com necessidadesde cuidados paliativos; descrever as perceções dosfamiliares relativamente ao apoio e à disponibilidadedos enfermeiros.Metodologia: Estudo qualitativo, com recurso a umaentrevista semiestruturada, aplicada a 10 familiaresde doentes oncológicos com necessidade de cuidadospaliativos, internados num serviço cirúrgico, cujosresultados foram analisados através da análise de conteúdo.Resultados: Os familiares entrevistados consideramque a dinâmica hospitalar é centrada no curar e que nãoforam cuidados pelos enfermeiros, não existindo, assim,interesse pelo seu processo experiencial e vivencial.Conclusão: Identificámos fatores facilitadores edificultadores percecionados pelos familiares aquandodo internamento do seu familiar. Pensamos queos resultados deste estudo indicam ser necessáriauma mudança na prática de enfermagem, quer emtermos de relação de ajuda, quer no próprio cuidarem enfermagem, tendo sempre presente que a famíliatambém deve ser cuidada.(AU)

The Use of Digital Technologies in the Promotion of Health Literacy and Empowerment of Informal Caregivers: Scoping Review.

BACKGROUND: Informal caregivers (IC) play an important role in the community as health care providers for people who are dependent on self-care. Health literacy contributes to empowerment, better care, and self-management of one's own health and can be developed using digital technologies. OBJECTIVE: This study aims to map scientific evidence about the use of digital technologies to promote health literacy and the empowerment of ICs. METHODS: We conducted a scoping review following the Joanna Briggs Institute methodology. The CINAHL, MEDLINE, Scopus, and PubMed databases were searched to find primary studies on the theme. Inclusion criteria were based on the Population, Concept, and Context logic. To be selected for analysis, studies must have involved informal or family caregivers aged ≥18 years who provide care to dependent persons and who have access to the internet and digital devices (computer, smartphone, and tablet). A total of 2 independent researchers (SS and LVH) performed the screening process. This study is part of a main project that was approved by the Ethics Committee for Health of the Regional Health Administration of Lisbon and Tagus Valley (reference 058/CES/INV/2022). RESULTS: A total of 9 studies were included in the review. The analysis of the studies showed that ICs use digital tools, such as computers and smartphones, with smartphones being the preferred tool. ICs use the internet to access information; manage home tasks; communicate with relatives, their peers, and health care professionals; and take part in forums. Due to difficulties in leaving their houses, forums are highly valued to preserve human connections. CONCLUSIONS: The use of digital technologies to convey clear, objective, reliable, and accessible information is a strategic action for promoting health literacy and for contemplating the variable care needs of ICs. By working with ICs in the development of new technologies, researchers are building a new tool that meets ICs' needs.