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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]

An introduction is presented in which the editor discusses articles in the issue on topics including methods and applications of quantifying informal caregiving time, effects on quality-adjusted life-years, and effects on caregiver such as healthcare utilization, employment, and schooling outcomes.

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]

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]

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]

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]

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]

Purpose: The aims of this systematic review were to summarize the profile of caregivers accessing cancer helplines, to evaluate caregiver satisfaction with the helpline service, and to review the evidence base of intervention studies testing the efficacy of community-based cancer helplines in improving caregiver health and well-being.Methods: Four electronic databases (Medline, CINAHL, PsychINFO, and EMBASE) were systematically searched to identify relevant literature, including all articles published in English until May 2018. Reference lists of accepted papers were reviewed for the inclusion of additional potentially relevant articles, gray literature was excluded.Results: Forty-five publications met the inclusion criteria for this review. Forty-one papers reported on the proportion of caregivers accessing cancer helplines. Twenty-six studies described demographic and clinical characteristics of caregivers and eight reported on call characteristics. Reasons for contacting the service were stated in 21 studies and caregiver satisfaction with the helpline service was assessed in 12 articles. Fourteen studies investigated specific topics of interest (e.g., prevalence of sleep problems, distress screening, or clinical trial participation). Two randomized controlled trials examined the efficacy of cancer helplines in improving caregiver outcomes, with findings showing interventions to be effective in reducing distress and unmet needs, and in increasing positive adjustment.Conclusions: There is limited scientific evidence regarding the efficacy of cancer helplines to improve caregivers' health and well-being. More intervention studies are needed to examine the benefits of cancer helplines to this study population to ensure structured referral pathways can be established. [ABSTRACT FROM AUTHOR]

Reported rates of mental illness continue to climb amongst young Australians. In a family environment the carers of these young people play a highly influential role in their recovery process, however this responsibility can also have significant emotional, financial and health impacts on carers. This paper details the findings of an evaluation project examining the impact and effectiveness of a newly developed and implemented Family Peer Support Work model. Benefits were found which included: family care-givers receiving emotional support and empathy; reduced stress, loneliness, isolation and stigma; bridging between the family and the clinical care team; helping families to navigate through the complexities of the care system; and connecting families to other services. Clarity on role definition for the FPSWs evolved over the course of implementation along with a clearer articulation of the model of care and emergent knowledge on useful elements of training, ongoing professional development, mentoring and wellbeing. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this report is to describe the Global Spine Care Initiative (GSCI) contributors, disclosures, and methods for reporting transparency on the development of the recommendations.Methods: World Spine Care convened the GSCI to develop an evidence-based, practical, and sustainable healthcare model for spinal care. The initiative aims to improve the management, prevention, and public health for spine-related disorders worldwide; thus, global representation was essential. A series of meetings established the initiative's mission and goals. Electronic surveys collected contributorship and demographic information, and experiences with spinal conditions to better understand perceptions and potential biases that were contributing to the model of care.Results: Sixty-eight clinicians and scientists participated in the deliberations and are authors of one or more of the GSCI articles. Of these experts, 57 reported providing spine care in 34 countries, (i.e., low-, middle-, and high-income countries, as well as underserved communities in high-income countries.) The majority reported personally experiencing or having a close family member with one or more spinal concerns including: spine-related trauma or injury, spinal problems that required emergency or surgical intervention, spinal pain referred from non-spine sources, spinal deformity, spinal pathology or disease, neurological problems, and/or mild, moderate, or severe back or neck pain. There were no substantial reported conflicts of interest.Conclusion: The GSCI participants have broad professional experience and wide international distribution with no discipline dominating the deliberations. The GSCI believes this set of papers has the potential to inform and improve spine care globally. These slides can be retrieved under Electronic Supplementary Material. [ABSTRACT FROM AUTHOR]

This paper focuses on older adults and the aging concerns of this population among groups of Asian American communities in a specific state in the southern region of the United States. A qualitative approach was used to gain a more in-depth understanding of issues related to aging from caregivers who are Asian American leaders from a community perspective. Areas of concern identified include intergenerational dynamics, physical and mental health concerns, and the need for a community center and living facility. The paper concludes with discussion on how to address the areas of concern. [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]

The provision of care to older persons can impose significant burden on those providing care, burdens influenced by care recipient characteristic, caregiver attributes and availability of social support. This paper focuses on identifying relationships between caregiver burden and the socio-demographic, health and functional status attributes of care recipients age 60 years and older in Jamaica. A nationally representative cross-sectional study was done among persons providing non-institutional care for a single person 60 years and older. Data were obtained from a total of 180 caregivers from the four geographic health regions of Jamaica using the Zarit Burden Interview and a 44-question structured questionnaire. Associations between caregiver burden and socio-demographic, health and functional status of care recipients were examined and logistic regression applied to ascertain independent predictors of caregiver burden. The results revealed statistically significant relationships between caregiver burden and care recipients' receipt of conditional cash transfer grants and the ability to toilet independently. In multivariate analysis, ability to toilet remained a significant predictor of caregiver burden—Caregivers who had care recipients who were able to toilet independently were 71% less likely to have mild to severe caregiver burden compared to those who had care recipients that were not able to toilet (OR 0.29; 95% CI 0.14–0.57). Families, health care providers, social workers, state actors and caregivers should take this into account as they develop strategies to mitigate associated caregiver burden. [ABSTRACT FROM AUTHOR]

Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation. [ABSTRACT FROM AUTHOR]

Objectives: Children of injured or disabled veterans and service members may be at risk for mental health and adjustment problems due to household stress. Yet, there are few widely available interventions to address the needs of this population. Reducing distress and improving coping skills of the parent who cares for the injured or disabled adult may improve child outcomes. This paper examines whether changes in caregiver psychosocial outcomes after a caregiver coaching intervention are associated with decreases in child anxiety. Methods: Using programmatic data collected between 2015 and 2019 from participants in a family caregiver coaching intervention (170 caregivers, 294 children), we apply linear mixed models to assess associations between changes in family caregiver well-being, including problem solving, depressive symptoms, burden, health complaints and quality of life, and changes in parent-reported child anxiety. Results: The baseline median Spence Children's Anxiety Scale—Parent score was 17; children aged 6–11 had slightly higher scores. Child anxiety scores decreased on average 2.8 points (SD 8.4) between baseline and follow-up. In adjusted models, decreases in caregiver depressive symptoms and health complaints were associated with decreases in child anxiety. Caregiver problem-solving skills, quality of life, and subjective burden were not associated with changes in child anxiety. Conclusion: Family caregiver-focused interventions that decrease caregiver stress may positively affect children in the household. Few resources are directed at military children; therefore, practitioners should consider ways to leverage caregiver interventions to address child well-being, such as incorporating information on parenting strategies and addressing issues faced by military children. [ABSTRACT FROM AUTHOR]

Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health. [ABSTRACT FROM AUTHOR]

Aim: To establish the potential economic burden in caregivers to patients with DMD and the potential causative factors. Method: Caregivers to patients with DMD were recruited through the DMD patients Register and questioned about several economic aspects using "ad-hoc" questionnaires. Results: All families, apart from one (97.2% n = 36), incurred in monthly medical costs (44% of the families more than 50 euros/month). 97.2% of the households considered looking after a patient of DMD as financially burdensome, and 80.5% of households declared to have suffered work changes, especially the mothers (job timetable-related mainly). The presence of obsessive–compulsive disorders (OCD) in patients was significantly associated with caregivers' high financial burden as these were six times more likely to have this perception OR = 6468 IC 95% (1056–39,601), p = 0.043. Also, when patients had learning difficulties, caregivers had up to six times more chances to incur in monthly expenditure for formal care OR = 6089 IC 95% (1112–33,342), p = 0.037. Interpretation: Caregivers have relevant financial burden that might be conditioned by the clinical condition of the patient. What this paper adds: Quantitative data about financial burden in DMD Spanish families providing informal care. Identification of the patient's main clinical issues associated with financial burden. [ABSTRACT FROM AUTHOR]

Objectives: Type 1 diabetes mellitus (T1DM) is an auto-immune disease that requires an important effort in self-management. The onset of T1DM in a child places a significant burden on parents, requiring careful management of blood glucose levels through insulin injections, diet and exercise. The main aim of our study is to synthesise what is known about the consequences of T1DM onset for families and, in particular, how parents share the emotional, practical and educational burden of care connected with diabetes management. Methods: To accomplish this goal, we conducted an integrative review of 29 studies concerned with the ways in which disease management permeates the daily lives of families. Based on our findings, we offer suggestions for future research. For this study, PubMed, SAGE Journals, Google Scholar, ERIC, Web of Science, Embase and Scopus databases from 2000 to 2017 were searched using keywords related to T1DM management in families, parental roles and learning processes. Our sample included qualitative, quantitative and mixed-method studies which assessed the consequences of T1DM onset for the family and, in particular, the ways through which disease management permeates the daily lives of mothers and fathers of children with T1DM (3–18 years of age). Results: The initial literature search returned 113 papers and 29 studies that met all the inclusion criteria. Through a content analysis, we identified three conceptual categories: (i) 'managing emotions after diagnosis', (ii) 'reconstructing routines around new needs' and (iii) 'educating young patients to enhance autonomy'. Conclusions: The review results strongly support that diabetes is a family illness in which patients and parents are at the centre of emotions, routines and knowledge strictly connected to diabetes. Strong emotions, new routines and educational processes arise after T1DM onset, changing family life definitively. [ABSTRACT FROM AUTHOR]

The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient's hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers' burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers' needs in the hospital discharge process, to the advantage of the patients and the entire community. [ABSTRACT FROM AUTHOR]

Posttraumatic stress disorder (PTSD) is not uncommon among adolescents and young adults (AYAs). Left untreated, transition to adulthood might be especially challenging and/or prolonged for AYAs. However, it is unclear whether AYAs are adequately represented in current PTSD treatment research and whether they benefit to the same degree as younger or older individuals. In the first part of the paper, we reflect on developmental considerations in the treatment of AYAs and give an overview of current age-specific results in PTSD treatment research. Furthermore, we review individual trauma-focused evidence-based treatments that were examined in AYAs over the last 10 years. In the second part, we present data from an uncontrolled feasibility trial evaluating cognitive processing therapy (CPT) with some age-adapted modifications and an exposure component (written accounts). We treated 17 AYAs (aged 14 to 21) suffering from posttraumatic stress symptoms (PTSS). At posttreatment, participants had improved significantly with respect to clinician-rated PTSS severity (d = 1.32). Treatment gains were maintained throughout the 6-week and 6-month follow-ups. Results indicated that CPT, with only minor adaptations, was feasible and safe in AYAs. The recommendations for future research focus on the inclusion of young adults in trials with adolescents, more refined age reporting in clinical trials, and the encouragement of dismantling studies in youth. To conclude, clinical recommendations for caregiver involvement and the addressing of developmental tasks, motivational issues and emotion regulation problems are discussed. [ABSTRACT FROM AUTHOR]

Drawing from role theory, stress and coping, and caregiving literatures, this paper develops a model of family-role overload involving two forms of caregiver burden (subjective, objective) and two types of maladaptive changes in employee behavior (at work, personal), and hypothesizes that caregiver type (eldercare-only vs. sandwich) moderates all paths in the model. Partial Least Squares structural equation modeling (SEM) supported all hypothesized direct paths. Contrary to our hypotheses, data analysis showed two positive relationships (i.e., objective caregiver burden to family-role overload, family-role overload to maladaptive changes in personal behavior) were stronger for those in the eldercare-only sample than for those in the sandwich sample. Post hoc analysis revealed five significant gender differences in the relationships included in our model. This study contributes to work–family theory by reinforcing the need to consider both caregiver type and gender when researching the challenges faced by employees trying to balance work and caregiving. [ABSTRACT FROM AUTHOR]

The term sandwich generation describes individuals who are caught between the competing demands of caring for at least one dependent child and one or more aging parents. Of the approximate 8.1 million caregivers in Canada, 28 % were considered 'sandwiched'. Similar trends were found in the United States, with 15 % of middle-aged adults being sandwiched financially. Currently, little is known about the unique experiences of those providing care at both ends of the generational ladder. The purpose of this qualitative investigation was to explore the lived experiences of two married sandwich generation caregivers through the use of a case study. A married male and female who were caring for two dependent children and three aging parents each completed two one-on-one interviews with the researcher. The aging parents had varying ailments and needs, and thus the level of care required for each senior fluctuated. Several salient themes emerged from the data, but the following will be the focus of this paper: (1) Ebbs and Flows and (2) Stresses of Being Sandwiched. Notably, the participants' discussed how their lived experience differed depending on their current situation, as was also evident when the two interviews were compared. During difficult times, the participants' faced a number of challenges which will be discussed within the paper. As such, future research being conducted with this population should be conducted at multiple time points in order to fully capture the dynamic lived experiences of sandwich generation caregivers. [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]

Purpose: The aim of this paper is to describe a model of palliative rehabilitation for newly diagnosed advanced cancer patients and present data on how it was utilised during a randomised controlled trial (RCT).Methods: We designed a highly flexible, multidisciplinary model of palliative rehabilitation consisting of a "basic offer" and tailored elements. The model was evaluated in the setting on an RCT investigating the effect of systematic referral to a palliative rehabilitation clinic concurrently with standard oncology treatment or standard treatment alone. The basic offer of palliative rehabilitation was two consultations and a 12-week possibility of contacting a palliative rehabilitation team, if needed. In addition, patients and family caregivers could be offered participation in a 12-week patient/caregiver school combined with individually tailored physical exercise in groups, individual consultations, or both. Contacts with the palliative rehabilitation team and participant evaluation were registered prospectively.Results: Between December 2014 and December 2017, 132 adults with newly diagnosed advanced cancer were seen in the palliative rehabilitation outpatient clinic. Twenty percent of the participants received the basic offer only (n = 26), 45% additionally participated in the group program (n = 59), and 35% received supplementary individual consultations without participating in the group program (n = 47). The intervention was primarily led by nurses, and the main themes of the individual consultations were coping, pain, and nutrition. When asked if they would recommend the intervention to others in the same situation, 93% of the respondents agreed, 7% partly agreed, and no one disagreed.Conclusion: The new model of palliative rehabilitation presented here had a flexibility to meet the needs of the participants and led to a very high degree of patient satisfaction. It could serve as an inspiration to other cancer centres wanting to integrate palliative care into standard oncology services. [ABSTRACT FROM AUTHOR]

Purpose: Spine-related disorders are a leading cause of global disability and are a burden on society and to public health. Currently, there is no comprehensive, evidence-based model of care for spine-related disorders, which includes back and neck pain, deformity, spine injury, neurological conditions, spinal diseases, and pathology, that could be applied in global health care settings. The purposes of this paper are to propose: (1) principles to transform the delivery of spine care; (2) an evidence-based model that could be applied globally; and (3) implementation suggestions.Methods: The Global Spine Care Initiative (GSCI) meetings and literature reviews were synthesized into a seed document and distributed to spine care experts. After three rounds of a modified Delphi process, all participants reached consensus on the final model of care and implementation steps.Results: Sixty-six experts representing 24 countries participated. The GSCI model of care has eight core principles: person-centered, people-centered, biopsychosocial, proactive, evidence-based, integrative, collaborative, and self-sustaining. The model of care includes a classification system and care pathway, levels of care, and a focus on the patient's journey. The six steps for implementation are initiation and preparation; assessment of the current situation; planning and designing solutions; implementation; assessment and evaluation of program; and sustain program and scale up.Conclusion: The GSCI proposes an evidence-based, practical, sustainable, and scalable model of care representing eight core principles with a six-step implementation plan. The aim of this model is to help transform spine care globally, especially in low- and middle-income countries and underserved communities. These slides can be retrieved under Electronic Supplementary Material. [ABSTRACT FROM AUTHOR]

The aim of this paper is to specify the cost of treatment and care for people with Alzheimer's disease (AD) in the Czech Republic and also with a view to the future. Data availability is evaluated as well as the quality of cost comparison with other developed countries. Data for the Czech Republic will include data from the health insurance company regarding medicines and treatment, as well as a selected home caring for people with dementia and, ultimately, the Social Security Administration. The basic methods include an analysis of data from publicly available sources, direct interviews with the representatives of nursing homes caring for people with dementia and the representative of the Social Security Administration of the Czech Republic. Items will be specified within the category of direct costs. For the study, the indirect costs related to the loss of patient as well as caring person productivity are not considered. Costs for treatment and care are based from the data on 4162 patients, the costs of a bed from data on 391 beds in homes for the elderly. The average annual cost per patient with AD in the Czech Republic was calculated and came to the amount of 12,783 EUR. These items include outpatient care, inpatient care in a medical facility, inpatient care in homes and medications. In terms of share of these items on the direct costs, the largest item are services provided by special homes which contributes to the direct costs by 94 %, medications create 1 % and treatment (both outpatient and inpatient) 5 %. In the case of home care the total costs are lower at 4698 EUR. The Czech Republic as well as other developed countries are faced with the problem of unified accounting cost of people suffering from Alzheimer's disease. This then causes the calculation of the economic burden to be very difficult and indicative values. [ABSTRACT FROM AUTHOR]

In the last decades, both the lengthening of life expectancy and an accentuated decline in birth rates have reduced the consistency of the younger generational cohorts. Due to an ageing population, the burden of caregiving is expected to intensify in the next quarter of the century in Europe, especially for mature women. This paper investigates the impact of the provision of constant care for older parents on the mental health of adult daughters, between the ages of 50 and 75, living in different European countries. Data is drawn from the Survey of Health, Ageing and Retirement in Europe. Information on mental health status is provided by Euro-D depression scale, a measure of depression standardized across European countries. We focus on differences in the effects according to the North-South gradient: we test whether the relationship between informal caregiving and mental health differs across European macro-regions. Our results, robust under different specifications of the propensity score model, reveal a clear North-South gradient: the provision of informal care has a negative and significant impact on daughters' mental health in the Mediterranean countries only, where the amount of resources allocated to the Long Term Care is minimal and the local system of health and social services for the elderly lacks the necessary structures to meet the increasing demand for eldercare. [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]

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]

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]

Although socioeconomic status (SES) has been associated with a myriad of physical and psychological health indicators, it is arguably one of the most elusive constructs in the psychological literature. Most researchers agree that SES is complex and multidimensional; however, the majority of empirical studies that focus on SES do not measure (or attempt to measure) multiple components of the construct, instead focusing on one or two indicators of SES, most commonly household income and/or levels of education. This paper explores relationships among indicators of SES, disadvantage, and psychological well-being in two independent samples of families with children with severe emotional disturbances. In addition to utilizing two common SES indicators (parental education and income), we incorporated measures reflecting resource-related challenges of living, such as adequate food and housing. Based on analyses, we argue that such variables may better capture the challenges experienced by many families than traditional SES indicators. Findings also suggest that income and education relate to different aspects of family well-being, and solely using one or both of these variables may mask relevant relationships. Moreover, assessing practical, day-to-day challenges may permit a more nuanced picture of the relationships between factors associated with SES and indicators of well-being and adjustment. [ABSTRACT FROM AUTHOR]

Background: Bipolar disorder refers to a group of chronic psychiatric disorders of mood and energy levels. While dramatic psychiatric symptoms dominate the acute phase of the diseases, the chronic course is often determined by an increasing burden of co-occurring medical conditions. High rates of diabetes mellitus in patients with bipolar disorder are particularly striking, yet unexplained. Treatment and lifestyle factors could play a significant role, and some studies also suggest shared pathophysiology and risk factors. Objective: In this systematic literature review, we explored data around the relationship between bipolar disorder and diabetes mellitus in recently published population-based cohort studies with special focus on the elderly. Methods: A systematic search in the PubMed database for the combined terms 'bipolar disorder' AND 'elderly' AND 'diabetes' in papers published between January 2009 and December 2015 revealed 117 publications; 7 studies were large cohort studies, and therefore, were included in our review. Results: We found that age- and gender- adjusted risk for diabetes mellitus was increased in patients with bipolar disorder and vice versa (odds ratio range between 1.7 and 3.2). Discussion: Our results in large population-based cohort studies are consistent with the results of smaller studies and chart reviews. Even though it is likely that heterogeneous risk factors may play a role in diabetes mellitus and in bipolar disorder, growing evidence from cell culture experiments and animal studies suggests shared disease mechanisms. Furthermore, disease-modifying effects of bipolar disorder and diabetes mellitus on each other appear to be substantial, impacting both treatment response and outcomes. Conclusions: The risk of diabetes mellitus in patients with bipolar disorder is increased. Our findings add to the growing literature on this topic. Increasing evidence for shared disease mechanisms suggests new disease models that could explain the results of our study. A better understanding of the complex relationship between bipolar disorder and diabetes mellitus could lead to novel therapeutic approaches and improved outcomes. [ABSTRACT FROM AUTHOR]

Purpose: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life.Methods: A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers.Results: The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified.Conclusions: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer's life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures. [ABSTRACT FROM AUTHOR]

In this paper, the authors argue that effective couple interventions are important for the military given the impact deployment-related posttraumatic stress disorder (PTSD) has on couple relationships. The authors review the literature on military relationships and how PTSD, in particular, is problematic for these relationships. The authors then review evidence based couple therapy interventions targeting military couples and argue that Emotionally Focused Therapy is an ideally suited means of working with these couples as they face PTSD. [ABSTRACT FROM AUTHOR]

What kills people around the world and how it varies from place to place and over time is critical in mapping the global burden of disease and therefore, a relevant public health question, especially in developing countries. While more than two thirds of deaths worldwide are in developing countries, little is known about the causes of death in these nations. In many instances, vital registration systems are nonexistent or at best rudimentary, and even when deaths are registered, data on the cause of death in particular local contexts, which is an important step toward improving context-specific public health, are lacking. In this paper, we examine the trends in the causes of death among the urban poor in two informal settlements in Nairobi by applying the InterVA-4 software to verbal autopsy data. We examine cause of death data from 2646 verbal autopsies of deaths that occurred in the Nairobi Urban Health and Demographic Surveillance System (NUHDSS) between 1 January 2003 and 31 December 2012 among residents aged 15 years and above. The data is entered into the InterVA-4 computer program, which assigns cause of death using probabilistic modeling. The results are presented as annualized trends from 2003 to 2012 and disaggregated by gender and age. Over the 10-year period, the three major causes of death are tuberculosis (TB), injuries, and HIV/AIDS, accounting for 26.9, 20.9, and 17.3 % of all deaths, respectively. In 2003, HIV/AIDS was the highest cause of death followed by TB and then injuries. However, by 2012, TB and injuries had overtaken HIV/AIDS as the major causes of death. When this is examined by gender, HIV/AIDS was consistently higher for women than men across all the years generally by a ratio of 2 to 1. In terms of TB, it was more evenly distributed across the years for both males and females. We find that there is significant gender variation in deaths linked to injuries, with male deaths being higher than female deaths by a ratio of about 4 to 1. We also find a fifteen percentage point increase in the incidences of male deaths due to injuries between 2003 and 2012. For women, the corresponding deaths due to injuries remain fairly stable throughout the period. We find cardiovascular diseases as a significant cause of death over the period, with overall mortality increasing steadily from 1.6 % in 2003 to 8.1 % in 2012, and peaking at 13.7 % in 2005 and at 12.0 % in 2009. These deaths were consistently higher among women. We identified substantial variations in causes of death by age, with TB, HIV/AIDS, and CVD deaths lowest among younger residents and increasing with age, while injury-related deaths are highest among the youngest adults 15-19 and steadily declined with age. Also, deaths related to neoplasms and respiratory tract infections (RTIs) were prominent among older adults 50 years and above, especially since 2005. Emerging at this stage is evidence that HIV/AIDS, TB, injuries, and cardiovascular disease are linked to approximately 73 % of all adult deaths among the urban poor in Nairobi slums of Korogocho and Viwandani in the last 10 years. While mortality related to HIV/AIDS is generally declining, we see an increasing proportion of deaths due to TB, injuries, and cardiovascular diseases. In sum, substantial epidemiological transition is ongoing in this local context, with deaths linked to communicable diseases declining from 66 % in 2003 to 53 % in 2012, while deaths due to noncommunicable causes experienced a four-fold increase from 5 % in 2003 to 21.3 % in 2012, together with another two-fold increase in deaths due to external causes (injuries) from 11 % in 2003 to 22 % in 2012. It is important to also underscore the gender dimensions of the epidemiological transition clearly visible in the mix. Finally, the elevated levels of disadvantage of slum dwellers in our analysis relative to other population subgroups in Kenya continue to demonstrate appreciable deterioration of key urban health and social indicators, highlighting the need for a deliberate strategic focus on the health needs of the urban poor in policy and program efforts toward achieving international goals and national health and development targets. [ABSTRACT FROM AUTHOR]

Background: The burden of cleft care throughout a patients' life includes plastic surgery, otolaryngology (ENT), speech therapy and dental and orthodontic care, all of which are required to achieve an optimal outcome. We aimed to determine the burden of care across multiple specialties in babies born with cleft lip and/or palate up to the age of 21 years. We compare the outcomes to two larger multi-centre studies: the Americleft and Eurocleft studies. Methods: The regional database was used and all babies born between 1988 and 1995 were included. Medical records and the cleft database were used to determine cleft subtype, operations and outpatient appointments (plastics, ENT, dental, orthodontic, speech and language), hospital stay and length of follow-up. Results: A total of 321 patients with cleft lip and/or palate were born between 1988 and 1995. Complete data was available for 106 (33%). Primary and secondary plastic surgery operations increased with increasing cleft severity. Secondary surgery was highest in unilateral cleft lip and palate (UCLP)—64%. Total inpatient stay for plastic surgery operations was highest for bilateral cleft lip and palate (BCLP) (16.4 days) compared with 7.7 for incomplete cleft palate (iCPO). The outpatient burden for all specialities was highest in complex cleft patients: 48.5 appointments compared with 25.5 for children with an incomplete cleft palate. Follow-up time increased from 14.2 to 20.5 years. Conclusions: Unsurprisingly, both the inpatient and outpatient burdens of care are influenced by the complexity of the cleft and increase with worsening severity. Our results will help inform parents of the likely trajectory their child will face when diagnosed with each subtype of cleft. The 2014 data shows that modern cleft care is changing; a combination of reduced hospital stay and the addition of streamlined outpatient appointments will both be of great benefit. The influence of modern day life will hopefully reduce the associated burden that has been highlighted in this paper and it is vital the benefits of modernisation are communicated to parents as well. Level of evidence: Level III, risk/prognostic study. [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]

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]

Whereas determinants of self-assessed health status -subjective health are well scrutinized in developed countries, little is known about factors influencing how people appraise their own health in Sub-Sahara Africa. In the context of increasing burden of care due to high incidence of chronic diseases, poverty and social transformation this paper explores the predictors of self-appraised health status in Ghana. Using 2005-2008 wave of the World Values Survey, the authors employ parametric and ordered logistic regression techniques to assess the relative effect of economic, cultural, social capital, geographic, and demographic factors in molding subjective health among Ghanaians. The study reveals that cultural background has independent significant effect on subjective health over and above individual characteristics. The relative importance of cultural background in shaping subjective health is more significant and salient for Ewes compared to Akans. Income, age and satisfaction with life are noncultural variables that consistently emerged as predictors of subjective health among the respondents. Policy implications of the study are discussed echoing the need to adopt multidimensional approach to improving overall health paying attention to cultural background in the country. It is also suggested that more studies into the interplay between cultural background and social capital variables and subjective health are needed to untangle the rationale behind the association between culture and social capital and health status in the country. Future areas of research are also alluded to. [ABSTRACT FROM AUTHOR]

The implications of caring for a child with cerebral palsy (CP) are considerable, and parents have to cope with many changing demands related to the specific needs of their child. A new research field, devoted to the consequences of these caring tasks, has recently emerged. However, an overall vision is lacking, one that would enable us to understand how research is evolving and the relevant data that should be taken into account when planning interventions with these families. In this paper, we review the literature on the effects of caregiving on parents of children with CP, and summarize the factors related to these effects. A systematic search of online databases was performed and further studies were identified based on the reference lists of selected articles. Forty six articles that met the inclusion criteria were analysed. The review shows that caregivers of children with CP tend to have high levels of stress and depression and lower quality of life than parents of healthy children. We identify child behaviour and cognitive problems, low caregiver self-efficacy and low social support as factors that are consistently related with higher levels of stress and depression. The implications of these findings are discussed, especially those related to interventions that should be addressed to the family as a whole and which should aim to enhance parents' competence and resources to better cope with the demands of the caring task. [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]