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Aim: To map existing evidence and identify gaps in the literature concerning psychosocial impacts of being nil by mouth (NBM) as an adult. Design: A scoping review of the literature was undertaken using JBI guidance. A protocol was registered on the Open Science Framework (osf.io/43g9y). Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta‐Analysis extension for Scoping Reviews (PRISMA‐ScR). Methods: A comprehensive search of six databases (CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS and Web of Science) was performed for studies published up to February 2023, with no restriction to study type. A scope of the grey literature was also undertaken. Two authors independently assessed eligibility and extracted data. Descriptive statistical analysis and narrative synthesis were used, and patient and public involvement included in funding discussions. Results: A total of 23 papers were included in the review, consisting of 14 primary studies (7 qualitative and 7 quantitative) and 9 grey literature. Both global psychological distress and distress specific to being NBM (thirst, missing food and drink) were reported. Caregivers also experience distress from their family member being NBM. Furthermore, social impacts were reported for both patient and caregiver, primarily social isolation and subsequent low mood. Conclusion: Furthermore, research is needed to understand the prevalence of this population, how best to measure psychosocial impacts and to explore whether (and how) psychosocial impacts change over time. Advancement in this area would enable better service development to optimize care for this patient group. What is known about this topic?: Eating and drinking provides more than nutrition and hydration.A wide range of conditions can lead to recommendations for no longer eating and drinking (nil by mouth).Being nil by mouth (NBM) for short periods such as pre‐operative fasting causes distress; however, little is understood about impact on longer‐term abstinence from eating and drinking. What this paper adds?: Psychosocial consequences of being nil by mouth (NBM)have been investigated by both quantitative and qualitative studies.Being NBM impacts both patients and caregivers in various psychosocial aspects, including distress and social isolation.Several gaps remain, however, regarding ways to measure psychosocial impact of being NBM. [ABSTRACT FROM AUTHOR]

Aim: To investigate the effects of dyadic intervention on anxiety, depression, care burden and quality of life in informal caregivers of palliative patients with lung cancer. Background: Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients. Dyadic intervention has the potential for improving them but the overall effect is unclear. Design: A systematic review and meta‐analysis. Data sources All randomized controlled trials were retrieved from the following databases until 4 May 2023: Web of Science, Embase Ovid, PubMed, Cochrane Central Register of Randomized Controlled Trials, Weipu, Wanfang and Chinese National Knowledge Infrastructure databases. Review methods: This review was performed by Stata 12.0 and Review Manager 5.3. Results: Thirteen randomized controlled trials were in accordance with the inclusion and exclusion criteria (n = 1807). The results revealed that dyadic intervention significantly improved family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer. There was no significant difference in quality of life between the dyadic intervention group and family caregivers who did not receive the dyadic intervention. Conclusions: Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. Summary statement: What is already known about the topic? Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients.The overall effect of dyadic intervention for informal caregivers of palliative patients with lung cancer is unclear on account of different results reported in existing studies. What this paper adds? Dyadic intervention could improve family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer, even though it did not improve quality of life.Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. The implications of this paper: Medical personnel can provide personalized dyadic interventions based on the assessment of the palliative patient and their informal caregivers, such as providing illness understanding, symptom management and addressing psychosocial.Findings can be applied as a reference to help informal caregivers prevent potential emotional disturbance. [ABSTRACT FROM AUTHOR]

Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Aim s : The objective of this study was to examine the relationship between caregiving burden and pre‐death grief, with a specific focus on adult‐child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation. Methods: A convenience sample of 320 adult‐child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit‐Meuser Caregiver Grief Inventory‐Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist‐Revised. Results: Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre‐death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre‐death grief, but in the male group, this mediating effect did not exist. Conclusion: The study found evidence supporting the link between caregiving burden and pre‐death grief among adult‐child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre‐death grief. These associations only existed in the female group. Implications: This paper presented the importance of active coping skills in the dementia caregiving process. Impact: The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre‐death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre‐death grief. Community‐based and personal care support services should be promoted to alleviate their caregiving burden. Reporting Method: We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. Patient or Public Contribution: 'No patient or public involvement'. [ABSTRACT FROM AUTHOR]

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

Background: Autism Spectrum Disorder (ASD) is a lifelong disorder, occurring globally. It often requires supported living, usually with parents as the caregivers. Researchers have described parent caregiver stress, worry about the future, and difficulty accessing resources, yet a focus on a desired future is missing from the literature. The purpose of this paper is to discuss the results of a qualitative study exploring parent’s considerations and hopes for their autistic adult child’s later life. After IRB approval, parents of an adult child with an ASD were recruited via purposive sampling. Data saturation was reached after interviews with ten mothers and four fathers from the mid-Atlantic region of the United States. All interviews were virtual. Audio transcripts were verified prior to coding. Content analysis yielded several themes. Results showed that parents wished for “a good life” for their adult child with ASD. Parents hoped their adult child would be engaged with others and have meaningful activities. Alongside the aspirational positive focus, an additional theme was “worry, love and loss,” including parental worry about who would engage with and eventually care for their child. Implications: Healthcare providers and policymakers are charged with listening to families affected by autism and should work to help plan for and ensure an engaged late life for individuals with autism, while recognizing the inherent anticipatory loss. The paper concludes that parents of adult children with autism have a vision for their child’s late life that has meaning. Research is needed to understand best practices to support such a future. [ABSTRACT FROM AUTHOR]

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]

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

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

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

Objectives: (1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of interest of existing assessment tool entries. Background: The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools. Methods: A search was conducted using the keywords 'cancer', 'caregiver', 'burden' and 'scale' in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their 'primary reference' studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients. Results: This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks. Conclusion: This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources. Impact: What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity. What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources. Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers. Reporting Method: Retrieved with reference to systematic evaluation. Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Copyright of Anduli: Revista Andaluza de Ciencias Sociales is the property of Anduli: Revista Andaluza de Ciencias Sociales and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia. Methods: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. Results: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. Conclusion: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients. [ABSTRACT FROM AUTHOR]

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

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Hiring migrant live-in caregivers to take care of older adults with dementia, chronic disease or frailty has become more common in Europe, North America, the Middle East, and Asia. When older couples hire a non-relative to provide live-in caregiver services for a family member, the attendant household transformation – from couple to triad – gives rise to social and psychological challenges. Although live-in caregivers can be indispensable, living together can be very stressful for older adults and live-in caregiver. This article describes the emotional distress of two older adult wives in their eighties, and the therapeutic methods used to reduce it, including empathic understanding, legitimation of emotions, promotion of open communication, and formulation of a household 'management strategy,' establishing specific expectations concerning the parties' roles and a daily activity schedule. Involvement of older couples' children was found helpful, and was aided through psychoeducation. Gerontologists, therapists, educators, and social workers who serve the needs of older adults can effectively assist this population in the evolution of their perceptions of their new situation, the regaining of a sense of equilibrium, mastery and control over their lives, and the development of greater tolerance and understanding of migrant live-in caregivers' work burden, native culture, and individual practices. Professionals should actively screen for risks of burden, stress, depression, and anxiety in households in which live-in caregiver services may be considered. Psychoeducation and preparation of both the older adults and their live-in caregivers entering the new relationship may lessen the incidence of potential stressors. Implications: Clinical and Practical implications: Professionals need to triage and diagnose the difficulties and stressors that arise when older couples or their children invite a paid live-in caregiver into the home, changing the day-to-day routine and relationship dynamics of the household. Professionals should actively screen for risk of burden, stress, depression, and anxiety among healthier older spouses, who may feel discomfort and frustration when their independence and privacy are compromised and their primary role seems to be eclipsed by the activity of a paid live-in caregiver. Older adults, their family members, and paid live-in caregivers can benefit from psychoeducation to understand and address emotional difficulties inherent in situations where serious health decline leads to the hiring of a paid live-in caregiver. Following the clinical implications, this paper suggest some practical implications when proving therapy to older adults. It includes outreach and work with the spouses, and if possible with the children of the frail older adult. While frail older adults are usually the primary object of physical and emotional support, their healthier older spouses also require significant emotional support, especially in the early period after a paid live-in caregiver is hired. The children of older adults can be a very useful resource in promoting early intervention and providing continuing support for parents coping with the addition of a paid live-in caregiver to their parents' household. [ABSTRACT FROM AUTHOR]

Unequal distribution of child rearing and domestic responsibilities between parents contributes to gender inequity, a wicked problem in Australia. Inequitable parental leave policies at Australian public Universities place the burden of care squarely on the mother, diminishing or absenting the father. We examine how the gendered nature of the existing policies are constructed in ways that create inequities and discourage their uptake. A post‐structural feminist lens provides us with a theoretical vantage point from which this wicked problem can be problematized. We present three recommendations for enabling more equitable outcomes for parents. The first is to eradicate the punitive approach and support flexibility; second, the policies must be parental leave in name, provision and practice; and finally we recommend a minimum parental leave standard for Australian universities nationally. These findings have policy‐level significance for redressing parental leave inequity within the Australian university context. The paper concludes with theoretical contributions, practical implications, and suggestions for future research. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role. Methods: A scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020. Results: The searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways. Conclusion: Our review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care. [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]

Aim: This study aimed to examine the extent, range and variety of research in Europe describing healthcare interventions for older people with dementia (PwD) and family caregivers. Methods: This was a scoping review and followed the PRISMA Scoping Review guideline. MEDLINE, CINAHL and Cochrane library databases were searched for studies published between 2010 and 2020. Studies reporting healthcare interventions in Europe for PwD over 65 years and their family caregivers were included. Results: Twenty‐one studies from six European countries were included. The types of healthcare intervention identified were categorized as follows: (1) family unit intervention (interventions for both PwD and their family caregiver), (2) individual intervention (separate interventions for PwD or family caregivers) and (3) family caregiver only intervention (interventions for family caregivers only but with outcomes for both PwD and family caregivers). Conclusions: This review provides insight into healthcare interventions for older PwD and family caregivers in Europe. More studies are needed that focus on the family as a unit of care in dementia. Summary statement: What is already known about this topic? In Europe, the population is ageing, and the number of People with Dementia (PwD) who require long‐term care and family support is increasing.A diagnosis of dementia is a 'family affair', as dementia is associated with physical, emotional and social costs for both PwD and their family caregivers, with impacts on family dynamics and functioning, even more so, when the PwD are older. What this paper adds? This scoping review provides insight into the types of healthcare interventions targeting older PwD and family caregivers in Europe.It reveals that most studies (n = 19; 90%) consider the family of PwD as the 'context of care' and not as a recipient of care. As a result, the focus of interventions is on the well‐being and health of the PwD first and the family second, being seen as a resource for the care of the PwD. Implications of the study The family plays a central role in long‐term care of older PwD.A holistic approach to dementia care is needed that focuses on the health of family caregivers of PwD, in addition to the health of PwD. [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]

Copyright of Disasters is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

In this paper, I create a framework that explains how homelessness reduces a child's attachment security. Attachment theory states how over time and repeated interactions, children and caregivers develop patterns of behavior that foster the development of children's schemas about what to generally expect from relationships with others. In order for children to develop secure attachments, a caregiver must be consistent and sensitive when responding to their child. Homeless caregivers have to juggle many stressors at once and therefore have fewer mental or physical resources (the effects of caregiver stress) to devote to consistent, sensitive, and responsive caregiving. This theoretically grounded framework proposes that stressors affect homeless caregivers, which in turn affects their effective parenting effort, which ultimately impacts the child's attachment. I describe in detail each of the proposed associations in the framework and summarize existing literature that supports these theoretical processes. Limitations and future directions are also discussed. [ABSTRACT FROM AUTHOR]

Posttraumatic growth (PTG) refers to positive psychological changes that can occur from the struggle with traumatic experiences. Literature suggests the caregiving experience in psychosis is one which can be highly traumatic. Yet, more recently, a small but growing body of research suggests that positive aspects to caring as well as growth narratives can also result from this experience. The aim of this review was to identify facilitators of PTG in family members caring for an individual with psychosis. The review utilised thematic synthesis to analyse the included qualitative studies. A search of nine electronic databases was performed (Academic Search Complete, CINAHL, MEDLINE, PILOTS, ProQuest Central, PsycARTICLES, PsycINFO, Scopus, and Web of Science). Qualitative studies were included if any domains of PTG were reported. A total of twelve papers, including 156 participants met inclusion criteria and were analysed in the review. Thematic synthesis yielded four overarching themes, along with a number of subthemes: Unbreakable Family Bond, Meaning Making through Suffering, Strength through Solidarity and Accepting the Journey. Findings of this review suggest that caregivers can and do experience PTG when certain facilitators are present. Professionals can play a vital role in supporting caregivers to adjust to and progress along their journey in developing posttraumatic growth. [ABSTRACT FROM AUTHOR]

This scoping review aims to examine the caregiving experiences of Korean American caregivers of persons with dementia. A comprehensive electronic search was conducted within 5 databases (PubMed, CINAHL, Web of Science, Embase, PsycINFO-ProQuest) for papers published from 01/01/00 −01/24/22. Seventeen articles met the inclusion criteria. Thematic analysis was used to summarize key findings from these papers. Most Korean American dementia caregivers were immigrants and wives/daughters/daughters-in-law. Two themes emerged: 1) how Korean American caregivers perceived their caregiving experiences, and 2) how Korean American caregivers perceived their caregiving support services. Korean American caregivers often experience poor mental health and burden. Social support and familism were found to be two of the most important factors that determine their attitudes toward caregiving. Most reported barriers to utilizing public services. Challenges in finding culturally relevant resources were common. Dementia caregiving is a significant public health problem facing Korean Americans. Recommendations for future research are provided. [ABSTRACT FROM AUTHOR]

Background: The increase in the average age of the population, the decrease in the size of the household and rising in the number of working women impose an increasing burden on home caregivers in Iran. The aim of this study was to measure care burden of informal caregivers in Iran through systematic review and meta-analysis of existing literature. Materials and Methods: A systematic review was conducted by using national and international databases of Scopus, PubMed, Embase, Web of Science, SID, Magiran, and IranDoc papers in English and Persian language up to the first half of 2020. In this meta-analysis, we calculated the pooled care burden and 95% confidence intervals in Statistical Software For Data Science (STATA) V.15. Results: Forty-four papers were included in the current study based on inclusion and exclusion criteria comprising of 8626 samples. Pooled mean of Burden of Care was 52.01 (95% CI: 48.21-55.82). Highest pooled mean(SD) of care burden (64.37) was related to caregivers of schizophrenia patients (95% CI: 56.09–72.64). Highest care burden (53.45) was observed in most deprived areas (95%CI = 47.05–59.86). A statistically significant relationship was observed between caregivers gender and care burden (p < 0.05). Conclusions: The reported care burden of informal caregivers requires the establishment of a support system to control mental and physical stress. Due to the dispersion and cultural diversity in Iran, more studies are needed to obtain more accurate data. [ABSTRACT FROM AUTHOR]

This paper aims to describe a randomized controlled trial protocol evaluating the effectiveness, cost, and process of a stress process model-based program in dementia caregiving (DeCare-SPM) for family caregivers. Family caregivers of individuals with dementia will be recruited from memory clinics and community settings and randomly assigned to either DeCare-SPM or usual care. DeCare-SPM comprises three face-to-face sessions (ie, problem-based coping, emotion-based coping, meaning-based coping), and a fourth session (ie, social support) including weekly telephone-based consultation for four weeks and then monthly face-to-face boosters. Outcomes will be measured at baseline (T0), and at one (T1), three (T2), and six months (T3). The primary outcome is positive aspects of caregiving and secondary outcomes are caregiving (ie, sense of competence, caregiver burden, social support, anxiety, depression, and quality of life), dementia-related (ie, care dependency, neuropsychiatric symptoms, and quality of life), and stress-related biomarkers of blood and saliva. In addition, process and economic evaluations will be performed. Mixed-effects models will be used to assess intervention effects. Content analysis will be performed on the qualitative data. This paper described the protocol for comprehensive evaluation of the effectiveness, cost, and process of the theory-driven DeCare-SPM to inform how and why interventions work. It highlights the need to reduce challenges and enhance the positive aspects of dementia care. The DeCare-SPM will provide evidence-based insights into how to support and empower family caregivers in their important roles, thereby, leading to improved dementia care. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to study the value of informal care (IC) time from the perspective of caregivers using two alternative contingent valuation tools – willingness to pay (WTP) and willingness to accept (WTA) – and to identify the variables that affect the stated values. Design/methodology/approach: The authors used data from a multi-centre study of 610 adult caregivers conducted in two Spanish regions in 2013. The existence of "protest zeros" and "economic zeros" because of the severe budgetary constraints of the households was also considered. Two-part multivariate models were used to analyse the main factors that explained the declared values of WTA and WTP. Findings: The average WTP and WTA were €3.12 and €5.98 per hour of care, respectively (€3.2 and €6.3 when estimated values for "protest zeros" and "economic zeros" were considered). Some explanatory variables of WTA and WTP are coincident (place of residence and intensity of care time), whereas other variables only help to explain WTP values (household and negative coping with caregiving) or WTA values (age and burden of care). Some nuances are also identified when comparing the results obtained without protest and economic zeros with the estimated values of these special zeros. Originality/value: Studies analysing the determinants of WTP and WTA in IC settings are very scarce. This paper seeks to provide information to fill this gap. The results indicate that the variables that explain the value of IC from one perspective may differ from the variables that explain it from an alternative perspective. Given the relevance of contextual factors, studies on the topic should be expanded, and care should be taken with the extrapolation of results across countries and settings. [ABSTRACT FROM AUTHOR]

Purpose: Research on the concept of expressed emotion (EE) has expanded in recent years but its role in dementia still requires elucidation. Understanding the role of EE in the dementia context could help in the development of appropriate interventions. Method: The current review synthesized relevant literature to investigate the prevalence and correlates of EE status in families of people with dementia. A comprehensive search of four databases from inception to 2022 produced 2,683 papers; 18 studies met inclusion criteria. Results: The use of EE criteria differed not only across cultural contexts, but even within the same cultural context. Overall, the prevalence of EE in families with dementia compared with other psychiatric conditions was not high. Conclusion: Specific changes in EE over time remain to be explored, and findings emphasize the need to carefully discriminate High EE status based on the cultural background of family members with dementia. [Journal of Gerontological Nursing, 50(2), 17–25.] [ABSTRACT FROM AUTHOR]

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

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

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

Purpose: This paper aims to analyze how psychosocial support influences caring activities toward indigenous older adults. Design/methodology/approach: A descriptive study with the participation of 229 informal indigenous caregivers. The study considered both sociodemographic and medical variables. It used the mini-mental test to determine the cognitive level in the elderly. It applied the Yesavage and Zarit scales to establish depressive symptomatology and caregiver burden. Finally, the study used the MOS psychosocial support and Apgar screening questionnaires to assess the psychosocial dimension and the patient's family functional state, respectively. Findings: The study observed a low caregiver burden effect using the MOS questionnaire. This may be explained due to variability in the Zarit Scale Score product of other variables like years of care (−0.17 and −0.28), depressive symptoms (0.16 and 0.18), cognitive level (mini-mental) (−0.13 and −0.14) and comorbidity (0.26 and −0.27). The study obtained an incidence between (−0.02 and −0.12) when including all assessed dimensions into the model. The instrumental dimension in the social support questionnaire obtained the highest score. Originality/value: Protective factors prevail in the group of indigenous caregivers allowing this activity to not trigger overload. Yet, variables such as the female gender, some comorbidities and the presence of depressive symptoms could be potential variables for dysfunction in this occupational role. [ABSTRACT FROM AUTHOR]

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

Background: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. Methods: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. Discussion: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. Trial registration: ISRCTN92831552. Registered on 26th Oct 2021. [ABSTRACT FROM AUTHOR]

As the U.S. population ages, the demand for long-term care services and support has increased, including those typically provided by informal caregivers. As a result of increased reliance on informal caregivers, caregiver burden is a growing concern, impacting the well-being of caregivers and patient outcomes. This paper explores the development, pilot, and evaluation of a caregiver engagement app designed to alleviate caregiver burden and enhance patient care in rural Michigan counties. Drawing on a multi-step approach, including key-informant interviews, empathy interviews, and focus group discussions, caregiver needs were identified and incorporated into the app's design and interface. The app, genusConnect, provided caregivers with educational resources, care coordination tools, and communication features to support them and patient care. Pre-post intervention data indicated positive perceptions of the app's usability and efficacy in reducing caregiver burden and social isolation. Despite these promising findings, challenges remain in addressing financial support for caregivers and expanding the generalizability of the app to accommodate diverse caregiver populations and patient conditions. Future research should focus on addressing these limitations and further developing the app to better support caregivers and improve patient outcomes. [ABSTRACT FROM AUTHOR]

In this paper, we argue that our moral concern for future well-being should reduce over time due to important practical considerations about how humans interact with spacetime. After surveying several of these considerations (around equality, special duties, existential contingency, and overlapping moral concern) we develop a set of core principles that can both explain their moral significance and highlight why this is inherently bound up with our relationship with spacetime. These relate to the equitable distribution of (1) moral concern in a universe that we can only causally affect in one temporal direction; (2) access to the benefits from using spacetime as a resource; and (3) the burdens of care given (1) and (2). We conclude by considering the practical implications of our argument and find that, while it is often assumed that a preference for present over future well-being weakens the case for existential risk mitigation, this likely is not the case. [ABSTRACT FROM AUTHOR]

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

This paper presents current information on policy developments, service design, best practices, and approaches to empower the users of health and medical care services for people with intellectual disabilities in Poland. Polish regulations allow systemic support to be provided for all people with disabilities. However, Polish patients with intellectual disabilitiy (PwID) and their caregivers face many barriers. Although a key obstacle is the lack of a standard definition that approaches disability in an interdisciplinary way, PwID are also more likely to experience difficulties in personal communication in medical settings and less likely to encounter specialists prepared to work with this group. There is also a need to pay greater attention to the expectations of PwID. To facilitate a holistic approach to diagnosis and therapy, there needs to be coordination between different specialists, including medical staff, paramedics, psychologists, and teachers. Providing personal communication training for medical personnel, as well as developing dedicated procedures for PwID in primary health care, clinics and hospitals, will improve equal access to health and health literacy for all in Poland. Even so, it is important to respect the autonomy of PwID and the commitment of caregivers. [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]

The Covid-19 pandemic caused widespread closures of early care and education (ECE) facilities that negatively impacted children's socioemotional, behavioral, and academic development. Policies permitting child care centers to remain open by obtaining waivers from closure directives involved varying levels of administrative burden. This study examined administrative burden within waiver policies and its association with ECE stability, as measured by children's enrollment in waiver-obtaining child care centers. I found Black children were significantly less likely than White children to be enrolled in a waiver-obtaining center, and also far less likely to have a center that obtained a waiver very early on in the pandemic. Analyses showed rates of enrollment in waiver-obtaining centers were far lower among children whose centers experienced more administrative burden, and suggested racial disparities in ECE stability were driven by Black children's concentrated residence in communities where the waiver application process was more burdensome. [ABSTRACT FROM AUTHOR]

Aim: To synthesize evidence regarding the effectiveness of technology‐based psychosocial interventions in improving health‐related outcomes among family caregivers of stroke survivors. Design: A systematic review and meta‐analysis was reported by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Methods: Randomized controlled trials that investigated the effects of psychosocial interventions delivered through information and communication technologies on self‐efficacy, caregiving competence, caregiver burden, perceived social support, anxiety, depression, health‐related quality of life and cost‐effectiveness were included. Two researchers independently selected studies, extracted data, and appraised the quality of the included studies. Subgroup analysis, sensitivity analysis, and narrative synthesis were conducted. Data Sources: Ten electronic databases (PubMed, CENTRAL, Web of Science, Scopus, CINHAL, Embase, Institution of Electrical Engineers Xplore, Ovid Medline, PsycINFO, ProQuest Dissertations and Thesis) were searched up to February 2023. Results: Nineteen studies involving 1717 participants fulfilled the eligibility criteria. Technology‐based psychosocial interventions significantly improved self‐efficacy (SMD =.62), caregiving competence (SMD =.55), depression (SMD = −.25) and anxiety (SMD = −.35). However, perceived social support, caregiver burden, and health‐related quality of life did not show significant improvements. Subgroup analyses revealed that the interventions, lasting from 4 to 6 weeks and encompassing comprehensive contents, exhibited larger effect sizes. None of the studies measured cost‐effectiveness. Conclusion: The technology‐based psychosocial interventions are effective in enhancing self‐efficacy and caregiving competence, as well as alleviating anxiety, and depression among family caregivers of stroke survivors. Future research should investigate interventions delivered through various digital platforms using well‐designed RCTs with in‐depth qualitative data collection and measurement of health and cost‐effectiveness outcomes. Impact: Through psychosocial interventions, healthcare providers in clinical and community settings, particularly nurses, could incorporate technologies into current stroke care practices. Patient or Public Contribution: It is not applicable as this is a systematic review. Registration: The protocol was registered on PROSPERO (CRD42023402871). [ABSTRACT FROM AUTHOR]

The illness experiences of advanced cancer patients are discussed in a Taiwanese cultural context, using an interpretive ethnographic approach (interviews and participant observations) emphasizing holism and symbolic interactionism. A total of 23 advanced cancer patients from different counties in Taiwan were recruited over a 42-month period. The researcher followed their progress as they approached death to better understand their terminal cancer experiences. An interpretive analysis guided by Agar's hermeneutic cycle approach revealed five emic dimensions: feeling the oppression of death, fighting alongside family, intensifying bodily healing efforts, settling unfinished business, and ending the struggle to control pain. Implications for caregivers are discussed. [ABSTRACT FROM AUTHOR]

Background: Adult day programs aim to facilitate aging in place by supporting the health and well-being of persons with dementia and providing respite to their caregivers. However, studies on the effects of day programs are inconclusive, and we especially lack insights into the context conditions and mechanisms of day programs that may produce different outcomes for different groups of persons with dementia and their caregivers. Our objective was to conduct a realist review, synthesizing research on day programs to develop program theories explaining how and why day programs do or do not produce positive or negative outcomes for different groups of persons with dementia, and caregivers. Methods: We identified 14 literature reviews (including 329 references published between 1975 and 2021) on adult day programs. From this initial pool of studies, we will include those that focused on day program attendees with dementia or meaningful cognitive impairment, and/or their caregivers, and that report how day program contexts (C) and mechanisms (M) bring about outcomes (O) for attendees and caregivers. We will extract CMO statements (i.e., narratives that explain how and why day programs do or do not bring about certain outcomes for whom and under what circumstances). Using additional focused searches, citation mapping, citation tracking, and discussions with our researcher and expert team members, we will identify additional references. CMO statements will be synthesized, transformed into hypotheses, and linked and visualized to form program theories. Using focus groups and the James Lind Alliance Priority Setting Partnership method, we will discuss and prioritize our CMO statements and refine our program theories with 32 experts (older adults, caregivers, Alzheimer societies, caregiver organizations, day program staff and managers, and health system and policy decision makers). Discussion: By identifying essential elements and processes of day programs and related knowledge gaps, this study will generate much-needed knowledge to leverage the full potential of day programs so they can provide appropriate care, preventing premature institutionalization, and unnecessary acute and primary care use. This will ultimately improve the quality of life of persons with dementia and their caregivers, alleviate caregiver burden, and reduce social costs. Systematic review registration: PROSPERO CRD42024504030 [ABSTRACT FROM AUTHOR]

Background: In patients with drug-resistant epilepsy (DRE), the composition of the gut microbiome changes compared to drug-sensitive patients and healthy individuals. Synbiotics, a mixture of probiotics and prebiotics, aim to improve the balance of bacteria in the gut microbiome. This study aimed to assess the effect of synbiotics on the treatment of DRE and the burden on caregivers. Methods: This one-group pretest-posttest quasi-experimental study was conducted in Arak, Iran. Thirty children with DRE, diagnosed by a pediatric neurologist and meeting the inclusion criteria in 2021-22, were included in the study. In addition to anticonvulsant drugs, infants were administered PediLact at a dose of 5–15 drops per day for eight weeks, and KidiLact at a dose of one sachet per day for eight weeks for children aged 2–15 years. Both PediLact and KidiLact are synbiotics. To investigate the burden on caregivers (parents), the Zarit Caregiver Burden Interview was conducted. In addition, the number of epileptic seizures was assessed from mothers before and immediately after the intervention over one month. Results: The mean age of the participants in the study was 8.6 years (SD: 3.4). Eighteen participants (60%) were boys, and 12 (40%) were girls. The results of the study showed a statistically significant decrease in the mean burden on caregivers, from 34.20 (SD: 14.4) before the intervention to 30.26 (SD: 15.8) after the intervention (P = 0.017). The mean frequency of seizures decreased significantly, from 15.83 (SD: 12.9) before the intervention to 12.73 (SD: 12.8) after the intervention (P = 0.001). Following the intervention, the seizure frequency stopped in two patients, decreased by 50% in six patients, increased in one patient, and remained unchanged in 21 patients. Conclusion: The results suggest that Symbiotics in DRE patients are associated with a lower parental burden of caregivers and seizure frequency. Well-designed randomized clinical trial studies are recommended to generate rigorous causal evidence and conclusions. [ABSTRACT FROM AUTHOR]

Background: The sudden nature of stroke onset does not provide carers with sufficient time to prepare for the demands associated with caring. Healthcare professionals can have a vital role in providing carers with support and training, which may reduce carer stress and strain, and allow for better health and rehabilitation outcomes for the stroke survivor. The experiences of healthcare professionals on supporting carers in stroke care, however, remain unclear. Objective: To understand the experiences and perceptions of healthcare professionals working in stroke care on implementing resources and support to informal stroke carers. Methods: Semi-structured interviews were conducted with 11 healthcare professionals (5 occupational therapists, 5 physiotherapists, 1 psychologist) with at least 12 months' experience in working with stroke survivors. Interviews ranged from 25–70 minutes in duration, and were recorded, transcribed, and analysed using thematic analysis. Results: Three overarching categories that were explored were: (1) Experiences of working in stroke care and supporting carers; (2) Recommendations for a program designed for carers; and (3) Future priorities in stroke care. Participants discussed a variety of strategies they utilised to support carers including collaborating with other healthcare professionals and utilising skills and experience. Healthcare professionals highlighted the need for additional resources that are designed specifically for carers and explored key topics including carer stress and fatigue, support services, stroke education, and how to look after oneself. Participants identified priorities for stroke care including additional professional training and resource availability. Conclusion: This study provided a unique insight from the perspectives of healthcare professionals on supporting carers. Participants identified the need for additional training and resources to equip healthcare professionals to better support carers. Future programs designed for carers should be informed by the needs and experiences of both informal carers and healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: This research aimed to develop and validate a dynamic nomogram for predicting the risk of high care dependency during the hospital-family transition periods in older stroke patients. Methods: 309 older stroke patients in the hospital-family transition periods who were treated in the Department of Neurology outpatient clinics of three general hospitals in Jinzhou, Liaoning Province from June to December 2023 were selected as the training set. The patients were investigated with the General Patient Information Questionnaire, the Care Dependency Scale (CDS), the Tilburg Frailty Inventory (TFI), the Hamilton Anxiety Rating Scale (HAMA), the Hamilton Depression Rating Scale-17 (HAMD-17), and the Mini Nutrition Assessment Short Form (MNA-SF). Lasso-logistic regression analysis was used to screen the risk factors for high care dependency in older stroke patients during the hospital-family transition period, and a dynamic nomogram model was constructed. The model was uploaded in the form of a web page based on Shiny apps. The Bootstrap method was employed to repeat the process 1000 times for internal validation. The model's predictive efficacy was assessed using the calibration plot, decision curve analysis curve (DCA), and area under the curve (AUC) of the receiver operator characteristic (ROC) curve. A total of 133 older stroke patients during the hospital-family transition periods who visited the outpatient department of Neurology of three general hospitals in Jinzhou from January to March 2024 were selected as the validation set for external validation of the model. Results: Based on the history of stroke, chronic disease, falls in the past 6 months, depression, malnutrition, and frailty, build a dynamic nomogram. The AUC under the ROC curves of the training set was 0.830 (95% CI: 0.784–0.875), and that of the validation set was 0.833 (95% CI: 0.766-0.900). The calibration curve was close to the ideal curve, and DCA results confirmed that the nomogram performed well in terms of clinical applicability. Conclusion: The online dynamic nomogram constructed in this study has good specificity, sensitivity, and clinical practicability, which can be applied to senior stroke patients as a prediction and assessment tool for high care dependency. It is of great significance to guide the development of early intervention strategies, optimize resource allocation, and reduce the care burden on families and society. [ABSTRACT FROM AUTHOR]

Background: Children in foster care who are newly placed with licensed or kinship caregivers are often vulnerable to increased behavior problems associated with trauma and social disruptions. When those issues are not addressed, children are susceptible to placement disruptions that exacerbate behavior problems. Few preventive interventions are available for foster and kinship caregivers, and none are designed to be delivered at the time of a child's placement into the home. This study aims to examine the impact of the Chicago Parent Program adapted and customized for foster and kinship caregivers (CPP-FC), locally branded as Caregivers on Point, on caregiver stress, parenting confidence and strategies, children's behaviors, and placement stability. Methods: Caregivers (N = 300) are being recruited from a specialized foster care clinic that sees children and caregivers within five business days of a new placement. Upon completing baseline surveys and behavioral observation, caregiver-child dyads are randomized to receive CPP-FC (n = 150) or usual care (n = 150). Those in the treatment condition will complete 11 weekly sessions addressing child behavior management and caregiving approaches. A booster session will occur one month after the weekly sessions conclude. A mid-point assessment and behavioral observation will be collected four months after the baseline assessment for all participants, coinciding with the completion of the CPP-FC programming. At 6 months post-baseline, an end-of-study assessment will be collected. Administrative data will be extracted from the child welfare record to determine placement stability for the 12 months following enrolment. The primary outcome of interest is child behavior, indicated by changes in caregiver reports and objective ratings of behavior from observations, where raters are blinded to the treatment arm and timing of data collection. Secondary outcomes include placement stability and changes in caregiver stress and confidence in managing children's behavior. Discussion: If found to be effective, CPP-FC would be helpful for families involved with child welfare. It could be delivered by child welfare agencies, licensing and kinship navigator agencies, and foster care clinics and may be eligible for government reimbursement as a preventive intervention for children in foster care. Trial registration: This study was prospectively registered with ClinicalTrials.gov, NCT06170047. [ABSTRACT FROM AUTHOR]

Background: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members' functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury. Methods: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects. Results: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient's level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated. Conclusions: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs. Trial registration: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018. [ABSTRACT FROM AUTHOR]

Purpose: We aimed to describe the intensity of care and its consequences on informal caregivers of stroke survivors according to the degree of care receivers' functional dependence for activities of daily living; and to identify the factors associated with caregivers' care-related quality of life. Methods: Cross-sectional analysis of prospective data collected in a cost-utility study alongside the RACECAT trial in Catalonia (Spain). One-hundred and thirty-two care receiver-caregiver pairs were interviewed six months after stroke. Functional dependence for activities of daily living was measured with the Barthel index. We assessed caregivers care-related quality of life with the CarerQoL, which measures seven dimensions of subjective burden (CarerQoL-7D) and a happiness score (CarerQoL-VAS). We evaluated the association between characteristics of informal caregivers, characteristics of care receivers, and intensity of care, and the caregiver's care-related quality of life (subjective burden and happiness) in a hypothesized model using a structural equation model. Results: Of the 132 caregivers, 74,2% were women with an average age of 59.4 ± 12.5 years. The 56.8% of them were spouses. The care intensity ranged from a mean of 24h/week for mild to 40h/week for severe dependence. Most caregivers (76.3%) were satisfied with their task, regardless of dependence, but showed increasing problems in caring for severely dependent persons. Being a woman (coeff. -0.23; 95%CI: -0.40, -0.07), spending more time in care tasks (coeff -0.37; -0.53, -0.21) and care receiver need of constant supervision (coeff 0.31; -0.47, -0.14) were associated with higher burden of care, irrespective of the degree of dependence. Caregiver burden (coeff 0.46; 0.30–0.61) and care receiver anxiety or depression (coeff -0.19; -0.34, -0.03) were associated with lower caregiver happiness. Conclusions: The findings suggest the importance of developing mainly two types of support interventions for caregivers: respite and psychosocial support. Especially for women with high caring burden and/or caring for persons with high levels of anxiety or depression. [ABSTRACT FROM AUTHOR]