An integrative pediatric oncology program addressing parents' quality of life-related concerns.

CONTEXT AND OBJECTIVES: 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. METHODS: The study was prospective, controlled, non-randomized 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). An IO consultation was provided, with training in daily relaxation-breathing and manual treatments, and guidance on herbal medicine. Parents in both groups were re-assessed after three weeks. RESULTS: 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 increased 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). CONCLUSION: 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".

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.

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.

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.

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.

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.

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.

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.

Perceived Threat of Alzheimer's Disease and Related Dementias Among Chinese Family Caregivers of Older Adults with Cognitive Impairment.

Perceived threat of Alzheimer's disease and related dementias (ADRD) has been found a widespread phenomenon in developed countries, but has not yet been fully explored in developing countries. Analyzing data from 300 family caregivers of older adults with cognitive impairment in China, this study found caregiver burden was positively associated with the perceived threat of ADRD, and this association was buffered by higher family income and longer caregiving time. To alleviate undue ADRD concerns, it suggests expanding respite care and community elder care beds, and initiating education programs on reducing unnecessary worries about developing ADRD.

Health effects of caregiving and coping with severe mental disorders: A caregivers' experience.

Background: Informal caregivers are an essential health resource in the care of persons with severe mental disorders, particularly in South Africa where access to mental healthcare services is limited. Aim: The study aimed to explore and describe the coping strategies used by informal caregivers and the specific health impacts they face in the context of severe mental disorders in South Africa. Setting: The study was conducted in Bushbuckridge municipality situated in the northeastern parts of Mpumalanga province, South Africa. Methods: A descriptive qualitative methodology was used to conduct semi-structured interviews with 12 purposefully selected participants. Audio-recorded interviews were translated, transcribed and analysed inductively on NVivo12 using reflexive thematic analysis. Results: The themes identified were caregivers' experience of consequences of caregiving and caregivers' experience of coping with their caregiving role. Participants experienced negative consequences on their emotional, mental and physical health. The participants use internal and external resources to cope with the challenges they face, and many highlighted using emotion-focused coping strategies. Conclusion: The findings revealed an urgent need to develop support strategies to strengthen informal caregivers' coping and promote good health particularly in rural South Africa where informal caregivers play a crucial role in the management of severe mental disorders. Contribution: The finding demands that policymakers and healthcare providers prioritise the health and well-being of the informal caregivers. There should be policies targeted specifically at developing and implementing caregiver-orientated healthcare services.

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.

Caring and Health of Close Family Members of Frail Older Persons Recently Discharged from Acute Hospital Care: A Comparative Cross-Sectional Study.

Multimorbidity in older people is strongly linked to the need for acute hospital care, and caregiving activities usually become more complex after patients are discharged from hospital. This may negatively impact the health of close family members, although this has not been comprehensively investigated. This study aimed to explore the general and mental health of close family members caring for frail older (>65) persons recently discharged from acute hospital care, making assessments in terms of gender, relationship to the older person, and aspects of caring. A comparative cross-sectional study was conducted involving 360 close family members caring for frail older persons recently discharged from hospital. The statistical analyses included subgroup comparisons and associations to caring were examined. Half of the family members reported that their general and mental health was poor, with spouses reporting the poorest health. Female participants had significantly more severe anxiety, while males had significantly more severe depression. Providing care for more than six hours per week was associated with poor general health (OR 2.31) and depression (OR 2.59). Feelings of powerless were associated with poor general health (OR 2.63), anxiety (6.95), and depression (3.29). This knowledge may provide healthcare professionals with better tools in order to individualise support, preventing family members from exceeding their resources during these demanding periods.

Interviews With Lay Caregivers About Their Experiences Supporting Patients Throughout Kidney Transplantation.

Introduction: Lay caregivers provide essential support to patients throughout the kidney transplant process, pretransplant through discharge. Sparse data exists about kidney transplant caregiver experience and facilitators of caregiver engagement. The aim of this study was to explore and describe lay caregivers' accounts of supporting a patient before and early after kidney transplantation. Methods: Caregivers of recent kidney transplant recipients were individually interviewed about their experiences, coping strategies, and perspectives of center-specific support approaches for patients and caregivers in a single transplant center. Results: Inductive content analysis of transcribed interviews with 23 caregivers revealed 6 domain areas: visit preparation, initial evaluation, caregiver role discussion, exposure to support resources, transplant preparedness, and coping styles. Caregivers used and appreciated information offered by the transplant center, including materials directed to the patient. They recommended repeating information, online access, and adding video to complement print resources. They valued and requested information directed to them, both within passive materials and communication with providers. Social network interactions were helpful for practical, emotional, and informational support. Support group reminders and connection pathways to peers were suggested for both patients and caregivers. Conclusion: Findings highlight steps that can be taken by transplant centers and may stimulate caregiver engagement. Featuring caregiver-focused information and communication more prominently may support caregivers to improve patient progress in navigating kidney transplantation.

The efficacy of dyadic interventions for community-dwelling people with dementia and their caregivers: A systematic review and meta-analysis.

Most people with dementia live at home and depend on informal caregivers for care. Both caregivers and persons with dementia can experience negative psychological and behavioural effects as the disease progresses. Non-pharmacological interventions can alleviate these effects and dyadic interventions, involving both caregiver and person with dementia, may be particularly effective. In this systematic review, the effect of dyadic interventions involving community-dwelling persons with dementia and their informal caregivers was researched. This article is an update of a review of dyadic interventions up to 2012 (Van't Leven et al., 2013). Twenty-two randomized controlled trials published between January 2012 and March 2023 met eligibility criteria, representing 3857 dyads. Results of a meta-analysis showed no overall intervention effect. Thirteen studies reported positive intervention effects, 9 studies reported no intervention effects. Intervention content and participant characteristics and knowledge of the disease varied widely between the studies reviewed. Effective interventions were those that matched activities for the person with dementia to their interests and abilities and educating the caregiver about dementia and communication. Interventions of moderate length (3-4 months) tended to be more effective than longer or shorter interventions. Future studies should further explore the factors contributing to the effects of dyadic interventions.

Humanistic burden of pediatric type 1 diabetes on children and informal caregivers: systematic literature reviews.

BACKGROUND: Diagnosis of children with type 1 diabetes (T1D) imposes an unprecedented burden on children and their caregivers. OBJECTIVE: To assess the burden of T1D on children and their informal caregivers, both after a recent diagnosis or after a longer duration of disease. METHODS: A series of systematic literature reviews were performed to explore the burden of T1D on children with the disease and their primary informal caregivers, based on the time of diagnosis. After the extraction of the qualitative and quantitative data from the included studies, two literature-based conceptual frameworks were developed: on the burden of pediatric T1D on children, and on informal caregivers. A third conceptual framework on the shared burden of pediatric T1D on both children and informal caregivers as part of the same family unit was also developed. RESULTS: The review of literature has identified a series of factors that affect the quality of life of children with T1D and their informal caregivers, with a direct impact on physical, emotional, and social outcomes. Generally, female patients and older adolescents experience more worry and stress that affects their quality of life. Other categories of factors affecting the child's and caregiver's burden include social, emotional, and physical factors, treatment-related and disease-related factors, as well as their coping abilities. Anxiety, depression, stress, and worry were commonly found among children and caregivers, starting with the diagnosis of T1D and continuing over time in relation to new challenges pertaining to aging or the disease duration. CONCLUSION: T1D causes a significant burden to affected children and their caregivers, both independently and through transactional interaction within the family unit. Disease burden can be reduced by strengthening individuals for the benefit of the whole family.

Sleep and Caregiver Burden Among Caregivers of Persons Living With Dementia: A Scoping Review.

Background and Objectives: Caregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep. Research Design and Methods: We conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized. Results: The search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain. Discussion and Implications: Although subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.