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Background: With the increase in the aging population, informal caregivers have become an essential pillar for the long-term care of older individuals. However, providing care can have a negative impact and increase the burden on caregivers, which is a cause for concern. Objective: This study aimed to comprehensively depict the concept of "informal caregiver burden" through bibliometric and content analyses. Methods: We searched the Web of Science (WoS) database to obtain bibliometric data and included only papers published between 2013 and 2022. We used content analysis to extract and identify the core concepts within the text systematically. Results: Altogether, 934 papers were included in the bibliometric analysis, from which we selected 19 highly impactful papers for content analysis. The results indicate that researchers have focused on exploring the factors that impact informal caregiver burden. Meanwhile, there has been a widespread discussion regarding the caregiver burden among those caring for recipients with specific illnesses, such as dementia, Alzheimer's disease, and cancer, as these illnesses can contribute to varying levels of burden on informal caregivers. In addition, questionnaires and interviews emerged as the predominant methods for data collection in the realm of informal caregiver research. Furthermore, we identified 26 distinct assessment tools specifically tailored for evaluating burden, such as caregiver strain index (CSI). Conclusion: For future studies, we suggest considering the intersectionality of factors contributing to the burden on informal caregivers. This approach could enhance the well-being of both caregivers and older care recipients. [ABSTRACT FROM AUTHOR]

Consistent, sensitive caregiving across home and childcare contexts supports optimal development. In this paper, we share the story of the development of Hearts and Minds on Babies (HMB) for Early Head Start (EHS) administrators, teachers, and parents. HMB was designed to support caregiver reflective functioning and sensitivity and reduce caregiver stress. This paper describes a series of Plan-Do-Study-Act cycles used to adapt an existing parenting intervention into the HMB programming for EHS. Throughout the paper, we present HMB concepts and learning objectives and share teachers' and parents' feedback and adaptations to content and delivery options that support implementation by EHS programs. Feedback from the final cycle suggests that HMB supports EHS administrators, teachers, and parents in their roles and improves relationships. The paper highlights the importance of research-practice partnerships in developing programming that meets the needs of EHS. [ABSTRACT FROM AUTHOR]

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (Mage = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha =.93) and test–retest (ICC =.95) reliability. Scores were normally distributed and sensitive to age (r = −.19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = −.35), and challenging behaviors (r =.57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children. [ABSTRACT FROM AUTHOR]

Background: In our companion paper, we addressed the interplay between caregiver impact, out-of-pocket expenditures, and Duchenne Muscular Dystrophy (DMD) disability. We found that DMD caregiver impact could be characterized by four Latent Profile Analysis impact profiles: lowest, lower middle, upper middle, and highest impact. The impact on caregivers was often but not always worse with greater out-of-pocket expenditures. Further, while the lowest-, lower-middle, and highest-impact profiles reflected low, moderate and high disability-related caregiver burden, respectively, the upper-middle profile group was quite variable in level of disability across domains. To better understand the four caregiver-impact profiles, we examine how a comprehensive set of psychosocial factors differentiate the four profile groups. Methods: Psychosocial factors assessed included demographic characteristics, quality of life (QOL), stress, cognitive appraisal, reserve-building, and general and COVID-specific resilience. Linear modeling examined relationships between impact profiles and psychosocial factors. We used effect size rather than p-value as the criterion for determining relevance of the broad range of characteristics examined. Results: Multivariate analyses implicated stress and environmental mastery, appraisal sampling of experience, COVID-specific variables, appraisal standards of comparison, appraisal goals, demographics, appraisal combinatory algorithm, reserve-building, and resilience, in order of prominence (average eta2 = 0.29, 0.29, 0.16, 0.15, 0.09, 0.07, 0.07, 0.06, 0.05, and 0.02, respectively). On the whole, comparisons of highest-versus-lowest impact profiles revealed more and larger differences than comparisons of upper-middle versus lower-middle impact profiles. Life stress, goals, and reserve-building activities had a smaller differentiating effect in the middle groups. Conclusion: A more comprehensive 'story' about DMD caregiver impact involves life stress, environmental mastery, COVID-specific variables, and cognitive and behavioral factors. Implications are discussed for coaching interventions to support DMD caregivers. [ABSTRACT FROM AUTHOR]

Background The coronavirus pandemic precipitated an increase in admissions to intensive care units (ICU). The related medium to long-term sequelae of critical illness posed a significant challenge to function and quality of life after discharge from the acute hospital, often requiring continued therapeutic input. Current evidence suggests that exercise therapy is effective in rehabilitating multiple systemic conditions. However, its role in post-ICU recovery remains unclear. The objective of this article was to discuss the merits and demerits of the exercise in subacute post-ICU settings based on available evidence. Effective, evidence-based rehabilitation from critical illness is crucial due to the increased number of patients and the significant burden on care and participation of those individuals. Methods The materials for this discursive review were selected after several database searches and analysis of available articles. As a result, six papers were found, four of which provided evidence for the beneficial effect of exercise in subacute rehabilitation of post-ICU patients, and two reported no differences between interventions and control groups.* Results Most of the studies found cardiovascular exercise to be safe and somewhat beneficial. However, adherence and attrition were problematic in this patient group, and the studies suffered methodological and measurement problems regarding group selection, exercise prescription and outcome measures applied. Conclusion The existing evidence base did not allow an informed consensus regarding the value of exercise in the subacute post-ICU recovery or lack thereof. Therefore, further investigation into patient retention strategies, exercise prescription and the choice of appropriate outcome measures is necessary. [ABSTRACT FROM AUTHOR]

Many patient-reported outcome measures (PROMs) have been used to study quality of life (QOL) in the skin cancer population. Advanced melanoma and non-melanoma skin cancer (NMSC) may be associated with increased morbidity, mortality, and treatment side effects; however, it is unclear which PROM is valid and appropriate to use in these populations for both clinical and research purposes. We aimed to identify the PROMs that have been used to measure QOL in advanced skin cancer patients and determine which of these PROMs have been validated to assess QOL outcomes in this population. A PubMed and EMBASE search was conducted from its inception to March 2021 according to PRISMA guidelines with a comprehensive list of search terms under three main topics: (1) PROM; (2) advanced skin cancer; and (3) staging and interventions. We included articles utilizing a PROM measuring QOL and having a patient population with advanced skin cancer defined as melanoma stage > T1a or non-melanoma AJCC stage T3 or greater. Advanced skin cancer patients were also defined as those with metastasis or requiring adjuvant therapy (systemic chemotherapy, radiation, and immunotherapy). Studies were excluded according to the following criteria: mix of low-risk and advanced skin cancer patients in the study population without stratification into low-risk and advanced groups, stage T1a melanoma or mix of stages without stratification, low-risk NMSC, no PROM (i.e., study specific questionnaires), non-English publication, review article or protocol paper, conference abstract, or populations including non-skin cancers. A total of 1,998 articles were identified. 82 met our inclusion criteria resulting in 22 PROMs: five generic health-related (QWB-SA, AQoL-8D, EQ-5D, SF-36, and PRISM), six general cancer (EORTC QLQ-C30, EORTC QLQ-C36, LASA, IOC, Rotterdam Symptom Checklist, and FACT-G), nine disease-focused or specialized (EORTC QLQ-H&N35, EORTC QLQ-MEL38, EORTC QLQ-BR23, Facial Disability Index, FACT-H&N, FACT-BRM, FACT-B, FACT-M, and scqolit), and two general dermatology (Skindex-16 and DLQI) PROMs. All PROMs have been generally validated except for EORTC QLQ-MEL38. Only two PROMs have been validated in the advanced melanoma population: FACT-M and EORTC QLQ-C36. No PROMS have been validated in the advanced NMSC population. The PROMs that were validated in the advanced melanoma population do not include QOL issues unique to advanced skin tumors such as odor, bleeding, itching, wound care burden, and public embarrassment. Breast cancer and head and neck cancer instruments were adapted but not validated for use in the advanced skin cancer population due to the lack of an adequate instrument for this population. This study highlights the need for PROM instrument validation or creation specifically geared toward the advanced skin cancer population. Future studies should aim to develop and validate a PROM to assess QOL in this population. [ABSTRACT FROM AUTHOR]

To find a way to realize sustainable development, this paper applied a cross-sectional ARDL (CS-ARDL) method to explore the interaction between carbon emissions, economic development, and health care expenditure for OECD countries. Firstly, we conduct a cross-sectional test to check whether the data is confronted with this issue. Secondly, we conduct a panel unit root test and cointegration test to confirm whether the ARDL-based method is suitable for our data. Thirdly, we analyze the results and provide possible explanations. Lastly, we conduct a short-term causality test to detect the connection between different variables. The main conclusion of our study includes: 1) Health care is a necessity in OECD countries. 2) Environmental deterioration places a heavy burden on health care expenditure in OECD countries. 3) Health care expenditure of last year negatively affects health care expenditure. 4) There is a short-run causality relationship from CO2, economic development, and dependency rate of youth to health care expenditure in OECD countries. Related policy proposals are provided according to our analysis of the results. [ABSTRACT FROM AUTHOR]

This study is an investigation of how staff working at a Danish nursing home experienced, perceived, and used a circadian lighting system that has been operating since 2018. The purpose of the installed circadian lighting was to improve the staff and residents' health and well-being. This paper demonstrates the importance of training and introducing the staff to the lighting system, especially operating, and maintaining a prolonged desired utilization of the system. In this study, we employed an action research methodology that included interviews, observations, and a questionnaire. We investigated 42 staff members' perceived visual comfort with, satisfaction with, perceived ease of use, and perceptions of the usefulness of the circadian lighting. Mixed methods proved valuable in the subjective assessment of light and visual comfort. We present an alternative card sorting method to study perceptions of a 24-hour lighting system. The findings revealed that the staff considered circadian light as satisfactory and a more adequate light for work than the existing lighting system. The staff considered being able to adjust the light important for maintaining visibility, setting the lighting depending on the activities, and meeting residents' needs. Furthermore, the results showed that a thought-out strategy to introduce the staff to the new lighting can be important for satisfaction and prolonged use of the lighting. Lastly, we also found that the circadian lighting system can improve the caregiver burden for night shift workers. [ABSTRACT FROM AUTHOR]

Purpose: Fear of cancer recurrence (FCR) may be equally prevalent, persistent and burdensome in cancer caregivers as in survivors. This systematic review evaluated FCR prevalence, severity, correlates, course, impact and interventions in cancer caregivers.Methods: Electronic databases were searched from 1997 to May 2021. Two reviewers identified eligible peer-reviewed qualitative or quantitative studies on FCR in adult caregivers or family members of adult cancer survivors. The risk of bias was assessed using the Cochrane Risk of Bias tools for randomised and non-randomised studies and the Mixed-Methods Appraisal Tool. A narrative synthesis and thematic synthesis occurred on quantitative and qualitative studies, respectively.Results: Of 2418 papers identified, 70 reports (59 peer-reviewed articles, 11 postgraduate theses) from 63 studies were included. Approximately 50% of caregivers experienced FCR. Younger caregivers and those caring for survivors with worse FCR or overall health reported higher FCR. Most studies found caregivers' FCR levels were equal to or greater than survivors'. Caregivers' FCR was persistently elevated but peaked approaching survivor follow-up appointments. Caregivers' FCR was associated with poorer quality of life in caregivers and survivors. Three studies found couple-based FCR interventions were acceptable, but had limited efficacy.Conclusions: FCR in caregivers is prevalent, persistent and burdensome. Younger caregivers of survivors with worse overall health or FCR are at the greatest risk. Further research on identifying and treating caregivers' FCR is required.Implications For Cancer Survivors: Caregiver and survivor FCR are similarly impactful and appear interrelated. Addressing FCR may improve outcomes for both cancer caregivers and survivors. [ABSTRACT FROM AUTHOR]

The novel coronavirus (COVID-19) has spread across the United States, resulting in significant changes in almost all aspects daily life. These changes place parents at increased risk for parental burnout. Parental burnout is a chronic condition resulting from high levels of parenting-related stress due to a mismatch between the demands of parenting and the resources available for parents to meet those demands. Research on parental burnout has suggested that parents who experience burnout are more likely to engage in child abuse and neglect, placing children at risk for detrimental short- and long-term outcomes. The purpose of this paper is to review the concept of parental burnout, discuss parental burnout in the context of the current COVID-19 pandemic, and focus specifically on the effects of child maltreatment. Implications for practitioners will be discussed. [ABSTRACT FROM AUTHOR]

Since it emerged in December of 2019, COVID-19 has placed a huge burden on medical care in countries throughout the world, as it led to a huge number of hospitalizations and mortalities. Many medical centers were overloaded, as their intensive care units and auxiliary protection resources proved insufficient, which made the effective allocation of medical resources an urgent matter. This study describes learned survival prediction models that could help medical professionals make effective decisions regarding patient triage and resource allocation. We created multiple data subsets from a publicly available COVID-19 epidemiological dataset to evaluate the effectiveness of various combinations of covariates—age, sex, geographic location, and chronic disease status—in learning survival models (here, "Individual Survival Distributions"; ISDs) for hospital discharge and also for death events. We then supplemented our datasets with demographic and economic information to obtain potentially more accurate survival models. Our extensive experiments compared several ISD models, using various measures. These results show that the "gradient boosting Cox machine" algorithm outperformed the competing techniques, in terms of these performance evaluation metrics, for predicting both an individual's likelihood of hospital discharge and COVID-19 mortality. Our curated datasets and code base are available at our Github repository for reproducing the results reported in this paper and for supporting future research. [ABSTRACT FROM AUTHOR]

Studies from developed countries show the prevalence of permanent childhood hearing loss to be 1 to 2 per thousand children. The estimated number of Ear, Nose, and Throat (ENT) specialists and otologists in India were 7000 and 2000. There is a great need for trained CI surgeons to care for that burden. Currently, only a handful of centres in the country provide CI training. This study aims to put together essential and desirable requisites for a clinical fellowship in CI surgery for ENT surgeons. A questionnaire was prepared and validated by 25 senior CI surgeons in India. Then the sixteen-question questionnaire was prepared and administered to 100 practising CI Surgeons (Group A) and 100 probable CI Fellowship Candidates (Group B). Group B involved surgeons currently pursuing their ENT post-graduation or have completed their postgraduate training and are inclined towards otology and CI surgery in the future. The responses ranged from 1 (Strongly Disagree) to 5 (Strongly Agree) on a Likert Scale. The responses from both groups were analyzed, and statistical analysis was performed using SPSS(Statistical Package for the Social Sciences) software. The results were analysed and tabulated from both groups. The weighted mean response and mean opinion to all the questions were calculated for both groups. Based on the response, "Essential" and "Desirable" criteria are given. [ABSTRACT FROM AUTHOR]

There is growing recognition of the profound mental health challenges faced by the 53 million U.S. family caregivers, and the need for increased access to psychosocial care for this vulnerable population. Family caregivers are increasingly seeking support from hospital-based counseling centers. This trend—combined with a public policy landscape that promotes the delivery of caregiver-specific supports and services—highlights challenges faced by mental health professionals to provide and bill for psychosocial care to family caregivers. In this paper, we discuss three interrelated challenges that mental health professionals face in providing care to family caregivers and which our field needs to confront as healthcare transfers more responsibilities onto the shoulders of family caregivers: (1) caregiver burden is not recognized as a formal diagnosis; (2) current documentation for caregivers is typically linked to patient encounters; and (3) support for family caregivers occurs within larger systematic barriers to mental health integration. By accurately describing and documenting caregiver burden and advocating for increased parity in mental health coverage, we hope that the field can bridge the gap between emerging research, momentum in policy, and available psychosocial services for this vulnerable population. [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]

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. [ABSTRACT FROM AUTHOR]

Providing care to a patient with cerebral palsy can have many negative impacts upon caregivers. This study was carried out to define caregiving burden in the caregivers of cerebral palsy patients and determine the relationships between religious coping, fatalism, and burden of care. This cross-sectional and correlational study included 132 caregivers. Data were obtained using the Religious Coping Scale, the Fatalism Scale, and the Caregiver Burden Scale. It was determined that 18.9% of the participants experienced a heavy care burden. The luck and pessimism dimensions of the Fatalism Scale were positively and weakly correlated with caregiving burden (p < 0.01), while there was no correlation between caregiving burden and positive or negative religious coping styles (p > 0.05). Perception of fatalism explained 10% of the total variance in caregiving burden (R = 0.329, R2 = 0.109, F = 5.195, p = 0.002). It is recommended that caregivers be supported by religious experts to strengthen positive religious coping styles and advisable fatalism perceptions. [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]

The Family Stress Model framework proposes that household income can influence child and youth development through caregiver psychological distress. While prior studies have observed stronger associations among households with lower income, the role of assets has been ignored. This is unfortunate, as many existing policies and practices that intend to improve child and family well-being are focused on assets. The purpose of this study is to clarify whether asset poverty moderates the direct and indirect effects of paths linking household income, caregiver psychological distress, and adolescent problematic behaviors. Using the 2017 and 2019 Panel Study of Income Dynamic Main Study and 2019 and 2020 Child Development Supplements, we find that the family stress processes consisting of household income, caregiver psychological distress, and adolescent problematic behaviors are less intensive for families with more assets. These findings not only add our knowledge of FSM by taking account the moderating role of assets but also advance our understanding that assets can benefit child and family well-being through alleviating family stress processes. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease is now one of the fastest-growing neurodegenerative disorders in the developed world, with an increasing prevalence and associated socioeconomic costs. Progression of the disease leads to a gradual deterioration in patients' quality of life, despite optimal treatment, and both medical and societal needs increase, often with the assistance of paid and/or unpaid caregivers. Objective: We aimed to quantify the incremental economic burden of Parkinson's disease by disease severity in a real-world setting across differing geographic regions. Methods: Demographics, clinical characteristics, health status, patient quality of life, caregiver burden, and healthcare resource utilization data were drawn from the Adelphi Parkinson's Disease Specific Program™, conducted in the USA, five European countries, and Japan. Results: A total of 563 neurologists provided data for 5299 individuals with Parkinson's disease; 61% were male, with a mean age of 64 years. Approximately 15% of individuals were deemed to have advanced disease, with significantly more comorbidities, and a poorer quality of life, than those with non-advanced disease. Overall, the mean annual healthcare resource utilization increased significantly with advancing disease, and resulted in a three-fold difference in the USA and Europe. The main drivers behind the high economic burden included hospitalizations, prescription medications, and indirect costs. Conclusions: People with Parkinson's disease, and their caregivers, incur a higher economic burden as their disease progresses. Future interventions that can control symptoms or slow disease progression could reduce the burden on people with Parkinson's disease and their caregivers, whilst also substantially impacting societal costs. [ABSTRACT FROM AUTHOR]

Impacts from substance use within families demonstrate there is a reciprocal relationship between substance use and family dysfunction/conflict and low family support. Caregivers supporting loved ones engaged in substance use experience wellbeing consequences. Few studies address both the individual tangible strains of the care provided and the role of relationship quality factors between loved ones in recovery including communication, trust, and family stability. Participants (N = 160, mean age 48.14 years; 48% female, 52% male) in the current study were 72% white and 11% Black, Indigenous, and People of Color (3%) and were recruited through substance use treatment agencies and recovery support forums for family members; 90% of participants reported being a parent or in a primary family caregiver role (step-parent, grandparent/extended family member who had raised the child; 10%) of an adult child who had sought treatment for substance use disorders. Results indicate these caregivers experience exacerbated psychological distress with mental health symptom ratings above the most severe clinical thresholds anxiety, depression, stress, and caregiver burden. Concerning ratings on family relationship quality factors were also evident. Linear regression using forward-entry methods significantly predicted over 40% (R2 =.419) of variance in caregiving burden F(5, 161) = 23.24, p =.000 and indicated that increases in anxiety, financial anxiety, and stress are the most significant predictors of caregiving burden. This study suggests that stress reduction interventions for family caregivers may be critical, particularly given of their central roles in their loved ones' treatment as facilitators of treatment activation, engagement, long-term recovery supports. [ABSTRACT FROM AUTHOR]

This study examined the relationship between child emotional and behavioral difficulties, parenting stress and the mental health of caregivers of adolescents living with HIV. Caregiver data from a two-year pilot study for adolescents and their caregivers (N = 89 dyads) in Uganda, were analyzed. Ordinary Least Square regression models were conducted to examine the association between child difficulties reported by caregivers using the Strengths and Difficulties Questionnaire on parenting stress (measured by Parenting Stress Index) and caregiver mental health (measured by the Brief Symptoms Inventory). Results indicate that 12.36% of caregivers reported child difficulty scores within the borderline range and 8.99% reported scores within the abnormal range. Child difficulties (b = 0.52, 95% CI: 0.18, 0.85) were associated with parenting stress. Similarly, the perceived impact of child difficulties was associated with both parenting stress (b = 0.89, 95% CI: 0.24, 1.54) and caregiver mental health (b = 1.73, 95% CI: 1.09, 2.37). Study findings have important implications for developing effective psychosocial interventions targeting children and adolescents living with HIV and their caregivers. Highlights: Child emotional and behavioral difficulties (EBDs) have been documented to predict parental mental health distress. In our study, 12% of caregivers reported EBD scores within the borderline range and 9% reported scores within the abnormal range. EBDs were associated with both caregiver parenting stress and mental health distress. Findings point to the need for the development of effective psychosocial interventions targeting adolescents living with HIV and their caregivers. [ABSTRACT FROM AUTHOR]

This narrative review aims to identify caregiver factors that influence children's trauma treatment process and outcomes and to explore areas for future research. It reviews 29 studies published between 1996 and 2018 identified based on a search of the PsycINFO database and reference review and organizes identified caregiver factors into factors that influence treatment engagement, treatment process, and treatment outcomes in a conceptual model. The results suggest caregiver motivation and caregivers' influences on the child's symptom presentation may impact initial treatment engagement. Treatment process appears to be impacted by caregiver demographics; caregiver trauma exposure; caregiver functioning; caregiver participation in treatment; and the therapeutic relationship. Treatment outcomes appear to be impacted by caregiver support of the child during treatment and caregiver functioning. Caregiver factors, as measured in the extant literature base, generally seem to have the potential to positively impact children's trauma treatment. Exceptions to this are when caregivers experience challenges supporting their child or their child's treatment. Additionally, several limitations are noted in the current literature. Namely, there is a lack of consistent operationalization of caregiver factors and types of caregiver participation, and the role of culture and diversity variables in caregivers' engagement in children's trauma treatment is understudied. [ABSTRACT FROM AUTHOR]

Previous literature documented that interpersonal strain arising from caregiving roles can negatively impact caregivers' health and well-being, and interpersonal support can buffer this association. Using a social network approach, we evaluated interpersonal strain due to malfeasant and nonfeasant care-related interactions and behaviors and interpersonal support through uplifting care-related interactions and behaviors. We investigated whether caregivers' perceptions of network members' malfeasant, nonfeasant, and uplifting interactions and behaviors were associated with caregivers' expectations regarding social network members' involvement in caring for a child with a rare or undiagnosed disease. Qualitative data was further utilized to explain how caregivers interpret these concepts. One hundred sixty-six (n = 166) primary caregivers providing care to 104 relatives diagnosed with a rare genetic or undiagnosed disease were recruited through ongoing research, advocacy groups, and family referrals. Caregivers provided information about 2,806 familial network members and interactions with them. For each network member, perceived contribution to caregiving and whether the contributions met caregivers' expectations, and interactions representing nonfeasance, malfeasance, and uplift were assessed. Confirmatory factor analysis for malfeasance, nonfeasance, and uplift demonstrated high construct validity for each and construct correlations were significant. Caregivers reported that network members whose care role contribution did not meet expectations were more likely to engage in malfeasance and nonfeasance (Odds Ratios range between 0.02 and 0.09, ps < 0.001); whereas network members providing uplift were meeting caregivers' support expectations (OR = 1.98; p = 0.024). Thematic analysis demonstrated that respondents' expectations of each network members' care role involvement derived from social roles and attributes of both the network members and the child. These findings can inform strategies that maximize opportunities for interpersonal support and minimize interpersonal strain. [ABSTRACT FROM AUTHOR]

Experiences of mothers of adult children with autism spectrum disorder (ASD) often are highlighted, with less attention on fathers' caregiving experiences. Less than 2% of research on caregiving has focused on fathers. However, the predominance of literature among father caregivers examines the experiences of fathers of young children, rather than fathers of adolescents and adults. The present study examines the influence of caregiver burden, perceived informal social support, and number of formal social supports on quality of life reported by a sample of 57 fathers of adult children diagnosed with ASD. Multiple linear regression analysis indicated developmental burden was negatively related to quality of life, with informal social support positively related to quality of life. These findings illustrate the need for professionals to acknowledge the role of fathers in their caregiving roles and encourage them to join or develop social support networks. Extending additional efforts to include fathers of adult children with ASD in both research and practice is important. Understanding the experiences and voices of father caregivers is needed and should be prioritized to enhance the lives of father caregivers, adult children with ASD, and the overall family unit. Highlights: This study focused solely on fathers of adult children with ASD, who are an understudied population. Informal social support was positively related to quality of life among fathers of adult children with ASD. In an effort to understand their experiences and voices, future studies should include fathers of adult children with ASD. Professionals should consider helping fathers of adult children with ASD to develop social support networks to provide emotional and physical support for their caregiving. [ABSTRACT FROM AUTHOR]

Background: Rhinitis is as an inflammation of the nasal mucosa, characterized by high prevalence, widespread morbidity, and a significant financial burden on health care systems. Nevertheless, it is often considered as no more than a mere annoyance. This point of view has progressively led to underestimate and trivialize the disease. Therefore, there are numerous, mostly overlapping classifications of rhinopaties, but clear and standardized guidelines for diagnosis and treatment are still lacking. In the context of Precision Medicine, the development of a classification system focused on the endotypes of rhinitis to be widely adopted appears of utmost importance, also by virtue of study of the nasal immunophlogosis that, thanks to nasal cytology (NC), has recently allowed to better define the different forms of rhinitis, giving a new nosological dignity to several rhinopaties. Aim: We aimed to summarize the current knowledge regarding rhinitis and to propose a systematic classification of rhinitis, based on both etiology and cytological findings [ABSTRACT FROM AUTHOR]

There are 5.3 million informal carers in the United Kingdom who take on caring responsibilities for family and friends. Informal carers can be forgotten patients within health and care services, yet because of carer burden, they are at risk of deterioration in health and wellbeing. There are higher levels of anxiety, depression, burnout and low self-esteem amongst carers but, to our knowledge work to date has mainly focused on supporting carers to provide better care for their family member, and less on carers' health and wellbeing. There is increasing interest in social prescribing as a method of linking patients with community-based services to improve health and wellbeing. Initiatives have included social prescribing via community pharmacies which are already recognized to be accessible for support and signposting. The coming together of community pharmacy services and social prescribing could represent a framework to better support carers in their mental health and wellbeing. [ABSTRACT FROM AUTHOR]

Little is known about the experience of caring for a son with anorexia nervosa (AN). Prior research with parents of primarily daughters with AN indicate that they experience significant distress. Ten mothers participated in semi-structured interviews regarding their experiences taking care of a son (between the ages of 11 and 18) who had inpatient treatment for AN within 2 years of the interview and was residing at home. Consensual qualitative research methods were used to analyze the data. Mothers reported challenges accessing and navigating treatment, noting that front-line providers missed their sons' AN because of their gender. Once their sons were diagnosed, mothers continued to experience distress and described negative changes in family relationships, including increased conflict with the diagnosed son, strained sibling relationships, and marital stress. The gender-atypical nature of AN negatively impacted perceived social support. Despite these negative findings, living with AN also offered an opportunity for growth, with some mothers reporting increased closeness with the diagnosed son, greater family unification, and strengthening of the marital bond. Based on these findings, it is recommended that treatment professionals provide greater psychological support and resources to mothers, who often assume primary caregiver responsibilities, and make treatment settings and approaches more gender inclusive. Highlights: Mothers experienced psychological distress, shame, guilt, isolation, self-doubt, and felt blamed by others. Obtaining an accurate diagnosis and appropriate treatment were perceived to be more difficult, due to their son's gender. Mothers described receiving less social support, which they ascribed to their sons' gender-atypical illness. Mothers reported challenges with healthcare professionals, including pediatricians, who minimized and dismissed their concerns. Validating mothers' concerns and helping them find support may enhance their functioning as caregivers. [ABSTRACT FROM AUTHOR]

Breast cancer impacts not only the physical and mental health of patients but also the people around them—especially their caregivers. This study examined the relationship between post-traumatic stress symptoms (PTSS) and caregiver burden in breast cancer patients through the mediating pathway of anxiety and depression. Methods: A total of 236 breast cancer patients from China completed the Chinese Version of the Posttraumatic Stress Disorder Symptom Scale (PSS), the Chinese version of the Patient Health Questionnaire (PHQ-9), the Chinese version of the General Anxiety Symptoms Scale (GAD-7). In addition, caregivers of these breast cancer patients were surveyed by the Caregiver Self-Assessment Questionnaire (CSAQ). Results: Structural equation model showed that our model fitted well [χ2 /df = 1.966, TLI = 0.959, CFI = 0.994, RMSEA (90% CI) = 0.065 (0–0.12)] and revealed that anxiety, but not depression, mediated the relationship between PTSS in breast cancer patients and caregiver burden. Conclusion: The level of PTSS was positively correlated with anxiety and depression in breast cancer patients, and the level of anxiety and depression was positively related to caregiver burden. The PTSS of patients positively predicted caregiver burden and this relationship appears to be mediated by the patient's anxiety. [ABSTRACT FROM AUTHOR]

Female caregivers of children with autism spectrum disorder (ASD) often report higher levels of psychological distress related to increased levels of caregiver strain, as well as frequency and severity of child problem behaviors (CPB). However, despite reported distress, caregivers have also reported benefits. A sample of n = 259 female caregivers of children with ASD completed online surveys assessing CPB, caregiver strain, psychological distress, and benefit finding. Results suggest that objective caregiver strain is a significant mediator between CPB and caregiver distress. Benefit finding, however, was not found to be a significant moderator. These findings inform theoretical applications and provide implications for future research in the development of interventions to enhance functioning in female caregivers. [ABSTRACT FROM AUTHOR]

When working with families of individuals with mental illness, therapists attend to multiple perspectives of family members. The current study quantitatively examines several perspectives of siblings within various role positions related to mental illness and suicidal ideation. The participating sample draws from: individuals with mental illness, siblings of those with mental illness, and individuals from families where both siblings have diagnosed mental illness. Across these positions, we compared experienced stress, distress, and burden and examined the function of the sibling bond. The study also explores patterns in overall functioning across these sibling positions. Our findings highlight the burden of siblings of those with mental illness, the psychological distress of those with MI, and the stressful environment of those siblings who both report mental illness. The study findings clarify commonalities within and across siblings, according to whether or not they report mental illness and/or suicidal ideation. Our findings suggest that families have both individual and shared narratives associated with the person reporting mental illness. The results of this study are used to further inform therapeutic practice with families of individuals with mental illness. [ABSTRACT FROM AUTHOR]

Aim: To explore associations of cerebrospinal fluid biomarkers of neurodegeneration and amyloidosis with caregiver burden, cognition and functionality in dementia with Lewy bodies (DLB) paired with late-onset Alzheimer's disease (AD) and healthy older people. Methods: Consecutive outpatients with DLB were matched with outpatients with AD according to sex, cognitive scores and dementia stage, and with cognitively healthy controls according to age and sex to investigate associations of cerebrospinal fluid amyloid-β (Aβ42,Aβ40,Aβ38), tau, phospho-tau Thr181, ubiquitin, α-synuclein and neurofilament light with caregiver burden, functionality, reverse digit span, a clock drawing test, Mini-Mental State Examination (MMSE) and Severe MMSE, adjusted for sex, age, education, dementia duration and APOE-ε4 alleles. Results: Overall, 27 patients with DLB (78.98 ± 9.0 years-old; eleven APOE-ε4 +) were paired with 27 patients with AD (81.50 ± 5.8 years-old; twelve APOE-ε4 +) and 27 controls (78.98 ± 8.7 years-old; four APOE-ε4 +); two-thirds were women. In AD, Aβ42/Aβ38 and Aβ42 were lower, while tau/Aβ42 and phospho-tau Thr181/Aβ42 were higher; α-synuclein/Aβ42 was lower in DLB and higher in AD. The following corrected associations remained significant: in DLB, instrumental functionality was inversely associated with tau/phospho-tau Thr181 and tau/Aβ42, and reverse digit span associated with α-synuclein; in AD, instrumental functionality was inversely associated with neurofilament light, clock drawing test scores inversely associated with phospho-tau Thr181/Aβ42 and α-synuclein/Aβ42, and Severe MMSE inversely associated with tau/Aβ42 and tau/phospho-tau Thr181. Conclusions: Cerebrospinal fluid phospho-tau Thr181 in DLB was similar to AD, but not Aβ42. In associations with test scores, biomarker ratios were superior to isolated biomarkers, while worse functionality was associated with axonal degeneration only in AD. [ABSTRACT FROM AUTHOR]

Background: Caregiving in Alzheimer's disease (AD) is often provided by informal care partners, who spend more hours per week on average than care partners of individuals with conditions other than AD. However, the burden of care in partners of individuals with AD has not been systematically compared to that of other chronic diseases. Objective: The current study therefore aims to compare the care partner burden of AD to that of other chronic diseases through a systematic literature review. Methods: Data was collected from journal articles published in the last 10 years, using two unique search strings in PubMed and analysed using pre-defined patient-reported outcome measures (PROMs) including the EQ-5D-5L, GAD-7, GHQ-12, PHQ-9, WPAI and the ZBI. The data was grouped according to the included PROMs and the diseases studied. The number of participants in the studies reporting burden of caregiving in AD was adjusted to reflect the number of participants in studies reporting care partner burden in other chronic diseases. Results: All results in this study are reported as a mean value and standard deviation (SD). The ZBI measurement was the most frequently used PROM to collect care partner burden (15 studies) and showed a moderate burden (mean 36.80, SD 18.35) on care partners of individuals with AD, higher than most of the other included diseases except for those characterized by psychiatric symptoms (mean scores 55.92 and 59.11). Other PROMs such as PHQ-9 (six studies) and GHQ-12 (four studies) showed a greater burden on care partners of individuals with other chronic diseases such as heart failure, haematopoietic cell transplantations, cancer and depression compared to AD. Likewise, GAD-7 and EQ-5D-5L measurements showed a lesser burden on care partners of individuals with AD compared to care partners of individuals with anxiety, cancer, asthma and chronic obstructive pulmonary disease. The current study suggests that care partners of individuals with AD experience a moderate burden, but with some variations depending on the PROMs used. Conclusion: The results of this study were mixed with some PROMs indicating a greater burden for care partners of individuals with AD versus other chronic diseases, and other PROMs showing a greater burden for care partners of individuals with other chronic diseases. Psychiatric disorders imposed a greater burden on care partners compared to AD, while somatic diseases in the musculoskeletal system resulted in a significantly smaller burden on care partners compared to AD. [ABSTRACT FROM AUTHOR]

Background: With an aging population, older adults are increasingly serving as caregivers to others, which may increase their risk of adverse interpersonal experiences. Objective: To investigate the prevalence and types of elder mistreatment experienced by older caregiving adults. Design: Cross-sectional analysis Participants: National sample of community-dwelling US adults over age 60 in 2015–2016. Main Measures: Caregiving (assisting another adult with day-to-day activities) was assessed by interviewer-administered questionnaires. Experience of elder mistreatment was assessed by participant-reported questionnaire in three domains: emotional, physical, and financial. Multivariable logistic regression models examined associations between caregiving status and each domain of elder mistreatment, adjusting for age, race, ethnicity, gender, education, marital status, concomitant care-receiving status, overall physical and mental health, and cognitive function. Additional logistic regression models examined associations between being the primary caregiver (rather than a secondary caregiver) and each domain of mistreatment among older caregivers. Key Results: Of the 1898 participants over age 60 (including 1062 women and 836 men, 83% non-Hispanic white, and 64% married or partnered), 14% reported serving as caregivers for other adults, including 8% who considered themselves to be the primary caregiver. Among these older caregivers, 38% reported experiencing emotional, 32% financial, and 6% physical mistreatment after age 60. In multivariable models, caregiving was associated with experiencing both emotional mistreatment (AOR 1.61, 95% CI 1.15–2.25) and financial mistreatment (AOR 1.72, 95% CI 1.18–2.50). In analyses confined to caregiving older adults, those who served as primary rather than secondary caregivers for other adults had an over two-fold increased odds of emotional mistreatment (AOR 2.17, 95% CI 1.07, 4.41). Conclusion: In this national cohort of older community-dwelling adults, caregiving was independently associated with experiencing emotional and financial mistreatment after age 60. Findings suggest that efforts to prevent or mitigate elder mistreatment should put more emphasis on vulnerable older caregivers. [ABSTRACT FROM AUTHOR]

Background: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. Methods: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). Results: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). Conclusions: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. Trial registration: N/A. [ABSTRACT FROM AUTHOR]

Aim: Adverse childhood experiences (ACEs) are associated with numerous adverse mental and physical health outcomes. While interest in routine screening for ACEs is growing, there is still significant opposition to universal screening. This review explores the feasibility of implementing routine screening for ACEs in primary care settings. Subject and methods: We searched PubMed, CINAHL, and PsycINFO, reference-mined relevant reviews, and consulted with key experts (June 2020). Studies from 1970 to date evaluating screening for childhood trauma, adversity, and ACEs in a routine healthcare setting, reporting quantitative or qualitative data were eligible. The project is registered in Open Science Framework (osf.io/5wef8) and reporting follows PRISMA-ScR guidelines. Results: Searches retrieved 1402 citations. Of 246 publications screened as full text, 43 studies met inclusion criteria. Studies evaluated provider burden, familiarity with ACEs, practice characteristics, barriers to screening, frequency of ACE inquiry, reported or desired training, patient comfort, and referrals to support services. Conclusions: This review found that the following factors increase the likelihood that ACE screenings can be successfully integrated into healthcare settings: staff trainings that increase provider confidence and competence in administering screenings, accessible and robust mental health resources, and organizational support. Further research should examine the scalability and sustainability of universal screening. [ABSTRACT FROM AUTHOR]

Family caregivers make significant contributions to the overall care of cancer patients and are the "invisible backbone" of the health care system. Family caregivers experience a wide range of challenges and can be considered patients in their own right, requiring support and dedicated attention, which may benefit them, the patients they are caring for, and the health care system. Despite consistent evidence on caregiver distress and unmet needs, most cancer care is organized around the patient as the target of care and caregiver distress is not screened for or addressed systematically. This article describes the development of a novel clinical, educational, and research program dedicated to supporting family caregivers at the Princess Margaret Cancer Center, Toronto, Canada and presents a model for a brief psychosocial intervention for caregivers. The objective of this article is to assist others in developing services to address the needs of family caregivers as a standard of care. [ABSTRACT FROM AUTHOR]

Objective: The objective of our study was to review, synthesize, and grade published evidence of caregiver burden of spinal muscular atrophy (SMA), a rare autosomal-recessive neuromuscular disease. Methods: We searched Embase and PubMed for full-text articles published from inception up until 28 February, 2022, reporting results from studies of caregiver burden (i.e., negative aspects of providing informal care) in SMA. Two investigators independently screened article titles and abstracts for eligibility, reviewed full-text versions of selected records, extracted the data, and assessed risk of bias using the Newcastle–Ottawa Scale. The evidence was synthesized to answer the following questions: (1) In which geographical settings have the caregiver burden of SMA been studied? (2) What aspects of the caregiver burden of SMA have been investigated? (3) What instruments have been used to measure the caregiver burden of SMA? (4) What is known of the caregiver burden of SMA? (5) How is the caregiver burden of SMA impacted by available disease-modifying drugs? Results: We identified 15 publications, covering samples from a total of ten countries (i.e., Australia, Canada, China, France, Germany, Romania, Spain, Turkey, the UK, and the USA), reporting estimates of caregiver burden derived using data recorded via surveys or interviews. The most common instruments used to measure caregiver burden were the Zarit Caregiver Burden Interview, the EQ-5D-5L, and the PedsQL Family Impact Model. Caregiving in SMA was found to be associated with reduced health-related quality of life, impaired family function, depression and anxiety, strain, and stress, as well as a substantial impact on work life and productivity. Evidence of the impact of disease-modifying drugs on caregiver burden in SMA was scarce. Conclusions: Caregivers to patients with SMA were found to be subject to a significant burden, including impaired health-related quality of life, reduced work ability and productivity, and financial stress, and many devote a substantial proportion of their time to provide informal care. Yet, the current body of literature is relatively scarce and more research is needed to better understand the clinical implications of informal caregiving in SMA and the relationship between caregiver burden and SMA types, as well as the impact of new disease-modifying treatments. Our synthesis will be helpful in informing clinical and social support programs (e.g., the routine screening of depression among caregivers, as well as financial support schemes to help manage the long-term day-to-day care) directed towards families caring for patients with SMA. [ABSTRACT FROM AUTHOR]

Background: Caregiver burden consists of disease specific and perceived stressors, respectively referred to as objective and subjective indicators of burden, and is associated with negative outcomes. Previous research has found that care partners to persons living with cognitive impairment and elevated levels of amyloid-β, as measured by a positron emission tomography (PET) scan, may experience caregiver burden. Aims: To elucidate the relationship between amyloid scan results and subjective and objective indicators of burden. Methods: A parallel mixed-methods design using survey data from 1338 care partners to persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study; and semi-structured interviews with a subsample of 62 care partners. Logistic regression models were used to investigate objective factors associated with caregiver burden. A thematic analysis of semi-structured interviews was used to investigate subjective indicators by exploring care partners' perceptions of their role following an amyloid scan. Results: Elevated amyloid was not associated with burden. However, the scan result influenced participants perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, whereas partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support. Conclusions: Amyloid scans can influence subjective indicators of burden and present the opportunity to identify and address care partners' support needs. [ABSTRACT FROM AUTHOR]

We aimed to examine the psychosocial well-being in the pancreas cancer patient-caregiver dyad, and determine patient and caregiver characteristics that predict caregiver distress. This was a cross-sectional, observational study. Demographics and caregiving characteristics were gathered from patients and caregivers. Caregivers completed validated instruments investigating anxiety, depression, perceived stress and caregiver burden. Over a period of eleven months, 128 patient-caregiver dyads were enrolled. Patient and caregiver distress scores were not associated with patient clinical disease burden. Patient distress was a significant predictor of concurrent caregiver distress, anxiety, depression, and perceived burden. Younger caregivers were also associated with higher caregiver anxiety and perceived burden. Additionally, number of caregiving activities and caregiver overall health status were predictors of concurrent caregiver depression and perceived stress. Certain pancreatic cancer patient and caregiver variables may negatively impact the well-being of caregivers. Future efforts should focus on development and implementation of comprehensive caregiver support programs for those at risk for psychosocial distress. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to analyze if and how conspiracy mentality is associated with mental health, burden and perceived social isolation and loneliness of informal caregivers of older individuals with care needs.Methods: A quantitative, cross-sectional study was conducted. Participants had to be at least 40 years of age and were drawn randomly from the German online panel forsa.omninet and questioned between the 4th and 19th of March 2021. A sample of 489 informal caregivers (relatives and non-relatives supporting individuals aged ≥ 60 years) was questioned. Conspiracy mentality, depressive symptoms, loneliness and social exclusion were measured with validated instruments (e.g., The Conspiracy Mentality Questionnaire). Questions referred to the last three months prior to assessment. Multiple linear regression analyses, adjusted for sociodemographic, economic and health factors and indicators of the pandemic, were conducted.Results: Findings indicate a significant positive association between conspiracy mentality and caregiver burden, loneliness, social exclusion, and depressive symptoms. No gender differences were found for any outcome.Conclusions: The results indicate that conspiracy mentality could be a risk factor for mental health, perceived social isolation and loneliness, and contribute to increased caregiver burden among informal caregivers of older care recipients during the COVID-19 pandemic. Accordingly, informal caregivers could benefit from actions focused on reducing conspiracy mentality during a health crisis, which could improve psychosocial health and wellbeing in this vulnerable group. [ABSTRACT FROM AUTHOR]

For both patients with amyotrophic lateral sclerosis (ALS) and their next of kin (NOK), the maintenance of quality of life (QoL) and mental health is particularly important. First studies suggest significant discrepancies between QoL reports by patients and NOK, but little is known for advanced ALS stages. To address this issue, we screened 52 ALS patients in incomplete locked-in state (iLIS). Final results were obtained for 15 couples of iLIS patients and NOK. We assessed patients' and NOK's subjective QoL, depression and anxiety and NOK's caregiver burden. Gaze controlled questionnaires allowed direct assessment of patients. Patients and NOK self-reported comparable, mostly moderate to high levels of QoL. Of note, NOK indicated stronger anxiety symptoms. Higher anxiety levels in NOK were associated with stronger caregiver burden and reduced QoL. No significant misjudgment of patient's QoL by the NOK was evident, while patients overestimated NOK's global QoL. However, NOK with severe caregiver burden and depression symptoms gave poorer estimations of patients' QoL. This relationship is relevant, considering NOK's impact on life critical treatment decisions. While the daily time NOK and patient spend together was positively correlated with NOK's QoL and mental health, this was not reversely found for the patients. Our results suggest that NOK adapt less successfully to the disease and concomitant experience of loss and point to an urgent need for specialized psychosocial support. The findings emphasize the importance of direct psychological wellbeing assessment of both patients and NOK in clinical practice, enabled by eye-tracking technology for patients in iLIS. [ABSTRACT FROM AUTHOR]

Childhood attention-deficit/hyperactivity disorder (ADHD) is associated with substantial burden to caregiver quality of life (QoL). However, a paucity of work has focused on quantifying QoL among caregivers of adolescents with a history of ADHD. The purpose of the current study was (1) to quantify maternal QoL in a sample of mothers of adolescents with and without childhood ADHD; and (2) to examine predictors (i.e., parent and child characteristics and behavior) associated with maternal QoL. Participants included mothers of adolescents with (N = 110) and without ADHD (N = 90) ranging in age from 13 to 18 (M = 16.09, 92% male). The Quality Adjusted Life-Year (QALY) was used to calculate maternal QoL using two health domains (i.e., anxiety/depression and disruption in daily activities) commonly impacted by raising youth with ADHD. QALYs are valued monetarily to estimate disease burden. Mothers of adolescents with childhood ADHD experienced significantly worse QoL relative to mothers in the comparison group. Maternal depression, as well as adolescent age, ADHD status, and discipline problems significantly predicted lower levels of maternal QALY health status index, with ADHD being the strongest predictor. This is equal to a reduction in 1.96 QALYs when summed over the course of a child's lifetime and is associated with a loss of $98,000 to $196,000. Results of the investigation help to further elucidate the health impacts incurred by families of adolescents with ADHD and have important public health implications. Further, parental QoL should be considered when conceptualizing the financial and negative health impact of ADHD. [ABSTRACT FROM AUTHOR]

Background: Serious illness often causes financial hardship for patients and families. Home-based palliative care (HBPC) may partly address this. Objective: Describe the prevalence and characteristics of patients and family caregivers with high financial distress at HBPC admission and examine the relationship between financial distress and patient and caregiver outcomes. Design, Settings, and Participants: Data for this cohort study were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC in Kaiser Permanente. We included 779 patients and 438 caregivers from January 2019 to January 2020. Measurements: Financial distress at admission to HBPC was measured using a global question (0–10-point scale: none=0; mild=1–5; moderate/severe=6+). Patient- (Edmonton Symptom Assessment Scale, distress thermometer, PROMIS-10) and caregiver (Preparedness for Caregiving, Zarit-12 Burden, PROMIS-10)-reported outcomes were measured at baseline and 1 month. Hospital utilization was captured using electronic medical records and claims. Mixed-effects adjusted models assessed survey measures and a proportional hazard competing risk model assessed hospital utilization. Results: Half of the patients reported some level of financial distress with younger patients more likely to have moderate/severe financial distress. Patients with moderate/severe financial distress at HBPC admission reported worse symptoms, general distress, and quality of life (QoL), and caregivers reported worse preparedness, burden, and QoL (all, p<.001). Compared to patients with no financial distress, moderate/severe financial distress patients had more social work contacts, improved symptom burden at 1 month (ESAS total score: −4.39; 95% CI: −7.61, −1.17; p<.01), and no increase in hospital-based utilization (adjusted hazard ratio: 1.11; 95% CI: 0.87–1.40; p=.41); their caregivers had improved PROMIS-10 mental scores (+2.68; 95% CI: 0.20, 5.16; p=.03). No other group differences were evident in the caregiver preparedness, burden, and physical QoL change scores. Conclusion: These findings highlight the importance and need for routine assessments of financial distress and for provision of social supports required to help families receiving palliative care services. [ABSTRACT FROM AUTHOR]

Family-centered care represents a collaborative partnership between caregivers and service providers, and is associated with positive caregiver and child outcomes. This approach may be especially important for caregivers with early concerns about autism, as service providers are often the gateway to appropriately-specialized intervention. Perceptions of family-centered care received from primary care providers (PCPs) and Part C Early Intervention (EI) providers were rated by two groups of caregivers: those concerned about autism (n = 37) and those concerned about another developmental problem (n = 22), using the Measure of Processes of Care (MPOC-20). Ratings did not differ across caregiver groups, but both groups rated EI providers significantly higher than PCPs, which may reflect systems-level differences between primary care and EI. [ABSTRACT FROM AUTHOR]

Introduction: Prediabetes is a major risk factor for diabetes and many chronic complications, particularly cardiovascular disease (CVD). Risk factors vary among races and demographics. This is the first study to assess prediabetes in Syria and its relevant risk factors. Methods: This cross-sectional study was conducted in a primary health clinic in Al-Mouwasat University Hospital, the major Hospital in Damascus, Syria. Interviews, examinations, and blood investigations were carried out by qualified physicians in the clinic. Results: This study included 406 participants, of which 363 (89.4%) were females, 43(10.6%) were males, 91 (22.4%) had prediabetes, 108 (26.6%) were overweight, and 231 (56.9%) were obese. Older age, positive family history of diabetes, obesity, abdominal obesity in females, high cholesterol, being married, and CVD were statistically significantly associated with prediabetes (p < 0.05). However, prediabetes was not associated with gender, living in the city or country, cigarette smoking, hypertension, diet, triglycerides, or polycystic ovary syndrome (p > 0.05). However, in the multivariable analysis, only high cholesterol, familial diabetes, and waist diameter had significant association. Conclusions: Prevalence of prediabetes in our study in Syria was higher than what was estimated by previous studies. While many risk factors were similar to other countries in the regions, other risk factors differed. These results were highly reflective of high burden of prediabetes and diabetes, mainly in relatively young females. Further studies are required to tackle this rising issue as it imposes major complications in the long term, and the high financial burden on the health care system. [ABSTRACT FROM AUTHOR]

Introduction: Patients with neurofibromatosis type 1 (NF1) may develop plexiform neurofibromas (PNs) that can cause disfigurement, pain, and dysfunction, and may even be life-threatening. Studies have indicated NF1-PN can substantially impact the quality of life (QoL) of pediatric patients. However, research on caregiver burden is scarce. Methods: Caregivers of pediatric patients ages 2–18 years with NF1-PN in the USA were recruited through the Children's Tumor Foundation to participate in an online cross-sectional survey (December 2020–January 2021). Caregiver burden was measured using the Zarit Burden Interview (ZBI), and productivity loss from patientcare was measured using the Work Productivity and Activity Impairment questionnaire, adapted for caregiving (WPAI:CG). Results: Ninety-five caregivers were recruited with a median age of 44.0 years. Most were female (88.4%), white/Caucasian (85.3%), and did not have NF1 or PN (86.3% and 89.5%, respectively). Commonly reported health conditions among caregivers include anxiety (48.4%) and depression (34.7%). On the ZBI (range 0–88; higher = greater burden), mean (SD) scores were 23.0 (13.8) and 12.7% of caregivers reported moderate–severe (scores 41–60) or severe burden (scores 61–88). Fifty-six caregivers were employed and working in the 7 days prior to completing the WPAI:CG. They reported missing an average of 6.9% of their working hours and an average reduction of 17.3% of on-the-job effectiveness, contributing to 22.3% loss in work productivity. Among all 95 caregivers, an average of 17.2% of regular daily activities were impaired. Conclusions: The burden among caregivers of pediatric patients with NF1-PN is considerable and underscores an unmet need for better disease management. [ABSTRACT FROM AUTHOR]

Many caregivers of autistic people experience mental health issues, and the impact of disruptions due to COVID-19 may present additional challenges for these individuals. This study characterized caregiver stress, anxiety, and resilient coping during COVID-19 and investigated the impact of COVID-19 disruptions, demographic variables, and resilient coping on mental health. The majority of caregivers reported some degree of disruption associated with COVID-19, and more than half reported moderate levels of stress and high anxiety. Resilient coping did not emerge as a moderator between COVID-19 disruptions and caregiver mental health, but instead had a direct effect on outcomes. Future research is needed to understand additional factors impacting the mental health of caregivers of autistic people during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

While the vast majority of family caregivers struggle to find balance between different roles in their lives, young adult caregivers are faced with the atypical challenge of caring for family member while simultaneously accomplishing developmental tasks typical of this stage in life (e.g., establishing career, developing romantic relationships). This exploratory, qualitative study examined strategies used by young adults to adopt family caregiving roles. These strategies can be described as embracement, compromise, and integration. While each approach allowed for the young adult to facilitate their caregiving role, additional research is needed to understand how the strategy affects the emerging adult's development. [ABSTRACT FROM AUTHOR]

Purpose: Overall survival of malignant brain tumour patients has significantly been increased over the last years. However, therapy remains palliative, and side effects should be balanced. Once terminal phase is entered, both patients and caregivers may find it hard to accept, and further therapies are demanded. But little is known about this highly sensitive period. Therefore, we analysed the last therapy decisions from the family caregiver's perspective. Would they support their beloved ones in the same way or would they now recommend a different therapy decision? Methods: Caregivers of deceased malignant brain tumour patients, treated at our neurooncological centre between 2011 and 2017, were included. We designed a questionnaire to analyse the impact of the last therapy decision (resection, chemotherapy, radiotherapy), focusing on probable repeat of the choice taken and general therapy satisfaction. Independent variables, for example "satisfaction with therapy", were analysed using linear regression analysis, the coefficient of determination R2 and the standardized regression coefficient β. The binary logistic regression analyses were taken to illustrate relationships with the dichotomously scaled outcome parameter "re-choice of therapy". Odds ratio analyses were used to determine the strength of a relationship between two characteristics. Results: Data from 102 caregivers (life partners (70.6%)) were analysed retrospectively. Each 40% of patients died in a hospice or at home (20% in a hospital). In 67.6% the last therapy was chemotherapy followed by radiotherapy (16.7%) and surgery (15.7%). A positive evaluation of the last therapy was significantly correlated to re-choosing of respective therapy (chemo-/radiotherapy: p = 0.000) and satisfaction with informed consent (p = 0.000). Satisfaction regarding interpersonal contact was significantly correlated to satisfaction with resection (p = 0.000) and chemotherapy (p = 0.000 27 caregivers (28.7%) felt overburdened with this situation). Conclusion: This analysis demonstrates a significant correlation between a positive relation of patient/caregiver/physician and the subjective perception of the latest therapy. It underlines the central role of caregivers, who should be involved in therapy discussions. Neurooncologists should be specially trained in communication and psycho-oncology. [ABSTRACT FROM AUTHOR]

Purpose: This review summarizes and synthesizes the available empirical literature on the experiences concerned with the problems and challenges faced by caregivers of patients with pancreatic cancer. Methods: An integrative review method was used, and a literature search was conducted using five databases. We searched the terms "pancreatic cancer," "caregiver," and "experience," and used the Boolean operators OR and AND to combine them. The Joanna Briggs Institute critical appraisal tools were used to assess the quality of the included studies. Results: Four qualitative studies, one mixed method, and three quantitative studies met the selection criteria and were included in the review. Informal family caregivers of patients with pancreatic cancer experienced multifaceted roles, lack of information, difficulties in maintaining emotional well-being, and positive coping. The factors associated with their caring experience included the caregivers' demographics, patients' psychological status, and clinical characteristics. Conclusion: Caregivers of patients with pancreatic cancer have various experiences while providing care. Health care providers should offer opportunities for caregivers to recognize their feelings, provide sufficient information and psychological support, and foster coping strategies to maintain the physical and psychosocial well-being of caregivers. [ABSTRACT FROM AUTHOR]