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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]

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]

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]

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: 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]

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]

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]

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.)

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]

Children living in poverty are at an increased risk for maltreatment. Social safety net (SSN) programs with antipoverty objectives may reduce child maltreatment through pathways such as reduced food insecurity, lessened caregiver stress, and improved caregiving behaviors and ability to meet children's basic needs. The objective of this study is to conduct a systematic review of evidence on the ability of SSN programs to reduce child maltreatment in the United States (U.S.). This systematic review was conducted using PRISMA protocol. Among studies published between 1996–2022, the initial search returned 1,873 articles, and 27 papers were included in the final analysis. Abstracts were identified primarily on June 24th, 2022, and extraction and synthesis of data was conducted in 2022–2023. Of the 27 papers assessed, 16 studies found that SSN programs were protective against child maltreatment. Three of the reviewed studies found no effect of safety net programs, 4 studies presented mixed findings, and 4 studies found adverse impacts in terms of child maltreatment outcomes. When restricting to high-quality studies only, 10 out of 12 found protective impacts and none found adverse impacts on child maltreatment. SSNs are associated with protective effects against child maltreatment. Expansion of SSN programs would likely have positive benefits beyond poverty-related objectives, including reducing incidence of child maltreatment. [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]

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]

Purpose: Most abuse affecting older adults in the UK, as across Europe, takes place within caring relationships, where one person is disabled and needs care/support. This paper critically appraises two of the key theoretical explanations. First, feminist theories of "intimate partner abuse" tell us that it is mostly men who perpetrate abuse against women. Second, "carer strain": the stress caused by caring responsibilities, often with inadequate help from services. Neither fully reflects the complex dynamics of "dangerous care" leading to a lack of voice and choice in safeguarding responses. This paper aims to articulate the need for an overarching theoretical framework, informed by a deeper understanding of the intersectional risk factors that create and compound the diverse experiences of harm by disabled people and family carers over the life course. Design/methodology/approach: The critical synthesis of the theoretical approaches informing UK policy and practice presented here arises from a structured literature review and discussions held with three relevant third sector agencies during the development of a research proposal. Findings: No single theory fully explains dangerous care and there are significant gaps in policy, resources and practice across service sectors, highlighting the need for joint training, intersectional working and research across service sectors. Originality/value: Drawing both on existing literature and on discussions across contrasting policy and practice sectors, this paper raises awareness of some less well-acknowledged complexities of abuse and responses to abuse in later life. [ABSTRACT FROM AUTHOR]

As the ageing population in China continues to grow, more people will be living with long-term health conditions and require support from family care-givers. This scoping review therefore aims to explore sources of stress and coping mechanisms adopted by care-givers of older relatives living with long-term conditions in mainland China. Literature searches were conducted in English (CINAHL, EMBASE, MEDLINE, PsycINFO and SCOPUS) and Chinese (CNKI, WANFANG DATA, CQVIP and CBM) databases between October and November 2019. The searches focused on the stressors and coping mechanisms utilised by family care-givers residing in the community. Narrative synthesis was used to identify themes within the data. Forty-six papers were included: 20 papers from English and 26 from Chinese databases. Six themes captured stressors: care-giving time (N = 22), financial resources (N = 17), role and personal strains (N = 42), preparedness (N = 4), social roles (N = 10) and lack of adequate formal support (N = 22); and one theme captured coping (N = 14). Unmet needs of care-givers of older relatives in mainland China were found to be extensive. Only a few studies had attempted to explore the causal link between stressors, coping and the influence of culture. Findings underscore the significance of adequately capturing intricacies around care-givers' unmet needs, rather than generalising on the basis of culture. Qualitative studies are critical to providing a better understanding of the relationship between stressors, coping and resources afforded to care-givers by their cultural environment. Having such understanding is crucial to inform the development of competent care, which promotes self-efficacy and self-actualisation in care-givers in mainland China. [ABSTRACT FROM AUTHOR]

With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery. [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]

Purpose: A systematic review of the literature was completed to examine the needs of those who provide care to people with intellectual disability and dementia. The purpose of this paper was to develop an understanding of the complexities, challenges and support available to meet the needs of an ageing population. Design/methodology/approach: A qualitative evidence synthesis was used to appraise 12 studies. An evidence synthesis approach was used to better understand the challenges caregivers experience in caring for a person with intellectual disability and dementia. Aggregating and integrating findings from multiple studies allowed to identify inconsistencies, quality, relationships and trends to enhance the awareness of gaps in care provision. Findings: There were six main domains identified from the available literature which included: gaps in knowledge and skills, early identification of dementia and associated difficulties, managing behaviour, coping, burden of care and Impact on confidence. Originality/value: To the best of the authors' knowledge, this is the first paper to use qualitative evidence synthesis to understand the challenges of caring for a person with intellectual disability and dementia. [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]

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]

Background: Previous research has demonstrated that many caregivers of care recipients with communication and swallowing impairments suffer from caregiver burden. Existing research sheds light on the presence of burden and various predicting factors, but little information on interventions to reduce caregiver burden. Aims: To determine how speech–language pathologists (SLPs) address caregiver burden in clinical practice. Methods: A systematic review was conducted according to PRISMA guidelines and 1898 unique articles were assessed for eligibility from nine electronic databases. Only 11 studies carried out a caregiver burden intervention involving an SLP. Details of the interventions were extracted per the Rehabilitation Treatment Specification System (RTSS) guidelines. Main Contribution: Results of the review revealed that SLP‐led caregiver burden interventions can be effective in reducing burden. Multiple aspects of the intervention approaches, such as multidisciplinary care and targeting emotional burden, are discussed. Demographic factors, such as gender and socio‐economic status (SES), are also taken into consideration. Conclusions & Implications: This review suggests that SLPs can be effective at reducing caregiver burden through interventions involving caregivers across the lifespan and continuum of care. What This Paper Adds: What is already known on this subject: Previous research has demonstrated that many caregivers of care recipients with communication and swallowing impairments suffer from caregiver burden. These caregivers range from parents of young children to spouses of individuals with dementia. However, it is unclear if and how SLPs address caregiver burden in clinical practice. What this paper adds to existing knowledge: Using the RTSS, details of various caregiver burden interventions involving SLPs were identified. This review revealed that SLP‐led caregiver burden interventions can be effective in reducing emotional and financial burden, as well as play a part in improving care–recipient outcomes. What are the potential or actual clinical implications of this work?: This systematic review demonstrates that efforts to reduce caregiver burden within SLP practice may yield benefits for both caregivers and care recipients. It provides clinicians with a preliminary resource to help consider caregiver burden interventions that best suit the needs of the caregivers and their care recipients. [ABSTRACT FROM AUTHOR]

The health and wellbeing benefits of Men's Sheds to the men who participate have had significant research attention for over a decade. However, there has been little research into the broader impacts of Men's Sheds, particularly in relation to the impacts on significant others in the lives of the men who participate. Our paper aims to redress this lack of research by focusing on the interrelated perceptions and experiences of men and those closest to them in four Men's Sheds in regional Victoria, Australia. The research shows that the partners and carers of 'shedders' reported that the men's participation not only benefited the men but also had benefits for their significant others. The study also showed that the partners of shedders in the study found that their individual and joint adjustment to retirement was in some cases assisted by the men enjoying the social and structured environment of the Men's Shed, while in other cases it was seen by partners as an over-commitment and impacting negatively on the marriage. The findings also shed some important light on some tensions experienced by the partners associated with carer burden and adjustments to retirement. [ABSTRACT FROM AUTHOR]

Background: Primary progressive aphasia (PPA) describes a group of language‐led dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves. Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs. Methods & Procedures: A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis. Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified. Conclusions & Implications: This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person‐centred approach that considers the broader needs of both the PwPPA and the people around them. This will enable service providers to deliver SLT that meets the needs of PwPPA and their families and will also inform future research in this field. WHAT THIS PAPER ADDS: What is already known on this subject: We know that PwPPA can maintain or even make improvements in word retrieval and speech fluency with SLT exercises. There is also developing evidence of the benefits of interventions such as CP training, communication aid support and other functional interventions. What this paper adds to existing knowledge: This study provides an understanding of the experiences and opinions of people living with PPA and their families in relation to SLT. Results demonstrate that PwPPA and their families have to navigate a complex journey, identifying strategies to support communication but also the influence of personality and other cognitive symptoms. SLT was useful, but not always available. What are the potential or actual clinical implications of this work?: This study will enable service providers to better plan, justify funding for and delivery of SLT that will meet the needs of PwPPA and their families. Most importantly this work underlines the importance of a person‐centred approach, incorporating the broader needs of the person with PPA and those around them. [ABSTRACT FROM AUTHOR]

Background: Communication difficulties are common in people with dementia, and often present from an early stage. However, direct treatment options for people with dementia that positively influence their daily communication are scarce. Aims: To evaluate the potential impact and feasibility of a personalized logopaedic intervention. Methods & Procedures: A total of 40 community‐dwelling persons with dementia and their caregivers were recruited. Five experienced speech and language therapists (SLTs) delivered the six‐session Com‐mens intervention at home. Com‐mens aims to improve positive communication between people with dementia and their primary caregivers and comprises five elements: interactive history‐taking, dynamic observational assessment, education about the consequences of dementia on communication, development and use of personalized communication tools, use motivational, and person‐centred strategies by the SLT. We conducted a single‐group mixed‐methods pilot study with five measurements: baseline, directly after intervention, and at 3, 6 and 9 months follow‐up. Semi‐structured interviews and questionnaires for Experienced Communication in Dementia, quality of life, psychological well‐being and caregiver burden were conducted. Process evaluation was performed by interviewing participants, drop‐outs, SLTs and other stakeholders. Outcomes & Results: A total of 32 dyads completed the intervention. Repeated measures analyses revealed no significant changes over time. In the interviews, participants reported a positive impact on their feelings, increased communication skills and better coping with the diagnosis. Participants would recommend the intervention to others. Facilitators were timely delivery, personalized content and adequate reimbursement. Barriers were unfamiliarity with Com‐mens among referrers, an overburdened caregiver or disrupted family relationships. Conclusions & Implications: This newly developed logopaedic intervention is feasible and has a perceived positive impact on both people with dementia and their caregivers, which is confirmed by a stable pattern over a period of 1 year. Future comparative studies are needed to test the effectiveness of personalized interventions in this patient population. What this paper adds: What is already known on the subject?: SLTs are experts in the field of communication, but even though communication problems are common between people with dementia and their caregivers, there is a lack of logopaedic guidelines and materials for the direct treatment for this population. Interventions that are available either focus on (professional) caregivers only or aim to enhance cognitive functioning and do not target on joined communication. What this paper adds to the existing knowledge?: A newly developed intervention called Com‐mens can be provided by trained SLTs and takes an average of six 1‐h sessions. The intervention is perceived to be valuable and feasible for people with dementia and their caregivers, by the participants themselves, as well as by healthcare professionals and other stakeholders. What are the potential or actual clinical implications of this work?: Dissemination of this intervention will give SLTs skills, tools and materials to provide meaningful care to home‐dwelling persons with dementia and their caregivers. Also, persons with dementia and their caregivers will receive education and materials that can help them increase their understanding of communication problems, enhance their communication skills and better cope with the communication problems that result from dementia. We consider the Com‐mens intervention to be a valuable addition to the field of speech language therapy and dementia. [ABSTRACT FROM AUTHOR]

5.5 million Americans have Alzheimer's disease or some form of dementia and by mid-century, the number of people living with dementia in the United States is projected to grow to 13.8 million. About half of the persons with dementia currently live at home, 43% require occasional support, 47% daily support, and 10% continuous support; with most of this support provided by informal family caregivers. Caregivers face on-going significant risk throughout the ebb and flow of providing care, as care recipients may lose grasp of their understanding of their circumstances, relying heavily on caregivers for all aspects of support. This support includes prompting and cueing through the multi-step instrumental activities of daily living (IADLs) such as meal preparation and house-keeping which require complex cognitive processing and are cognitively demanding. This paper describes the preliminary pilot study work laying the groundwork for ongoing development of a cognitive assistive technology (CAT) to support IADLs in dementia homecare. Through a user-centered design methodology, an online survey for caregivers identified areas of the home with the highest levels of IADL needs, aiding in the development of an 800 sq ft mock-up apartment for preliminary testing of the mobile interface for the CAT tool. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Dementia affects an increasing number of people and a person with dementia requires significant levels of care.Dementia care is often delivered by family members.Caring for someone with dementia places significant demand on the carer and support for the carer is often needed. What the paper adds to existing knowledge?: Research has been conducted into caregivers' experiences of caring for someone with dementia, but a synthesis of findings for studies from the UK is needed to collate the research evidence and provide an account of the common trends within the existing research.This paper adds to existing knowledge by highlighting the key difficulties experienced by carers of a person with dementia in their caring role and their experiences with support services across the existing research evidence. What are the implications for practice?: Improvements to the process of dementia assessment and the process of receiving a dementia diagnosis are needed.Information and support needs to be more accessible for the carer of a person with dementiaCultural differences need to be acknowledged in the support and information offered to carers of a person with dementia. Aim: To understand the experiences of informal carers' of individuals with dementia in the UK when engaging with services for support in their caring role. Methods: Following the PRISMA guidelines, a qualitative systematic literature review was carried out. Six Internet databases were searched. Results were screened, and eligible studies were appraised using Critical Appraisal Skills Programme (CASP, 2019) and data synthesized using Evan & Pearson (2001) and Evans (2002). Results: The search returned 231 records, 11 were selected for critical appraisal and data synthesis. Four main themes (information for carers, process of diagnosing dementia, difficulties accessing support and cultural differences of experiences of services) were extracted. Discussion: Carers experience services as providing inadequate support for the Person with Dementia (PwD) and themselves for support relating to dementia. Difficulties in receiving information and support were experienced from before diagnosis to end‐of‐life (EoL) care. Additionally, cultural differences were found in carers' experiences. Implications for practice: The provision of and access to dementia support should be improved; more information for carers about dementia and dementia services is needed; cultural differences need to be appreciated in the support and information offered. [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]

Purpose: The study of theoretical models explaining elder abuse has been one of the main gaps in the literature of the field. The extent of support of each theory is not clear. This study aims to conduct a systematic review to examine research supporting or opposing six theories of elder abuse: caregiver stress theory, social exchange theory, social learning theory, bidirectional theory, dyadic discord theory and the psychopathology of the caregiver. Design/methodology/approach: This study conducts a systematic review of the literature. Seven databases were searched six times using different keywords about each theory. Findings: This paper finds 26,229 references and then organised and analysed these references using pre-established criteria. In total, 89 papers were selected, which contained 117 results of interest; these papers were summarised and assessed for conceptual, methodological and evidence quality. The results showed evidence in favour of all the explored theories, except for social learning theory, whose results indicate multiple interpretations of the theory. This study finishes this paper by proposing that each of these theories might explain different facets of elder abuse and that more research is necessary to understand how the predictions of these different theories interact. Originality/value: This paper presents an extensive review of the literature on theoretical explanations of elder abuse. The findings can be of value for selecting theories for prevention programmes or providing a summary of the evidence for researchers and practitioners interested in the theoretical explanation of elder abuse. [ABSTRACT FROM AUTHOR]

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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]

This paper assesses the importance of incorporating care dimensions into activity-travel segmentation to understand daily life mobility strategies. The data came from six neighbourhoods in Concepción, Chile, and included detailed information on activity-travel time use and interaction and classification schemes to identify care purposes. The study uses self-organizing maps to build incremental behavioural segments from weekly mobility and time use variables, adding care activities to assess their role in this segmentation. The results identify groups with a higher burden on care than others, emphasizing the role of transport mode and time use patterns. The result remarks caregiving activities hidden within other categories, identifying groups of caregivers, including domestic workers and women who work and have intense accompanying activities with children. The results highlight the differences between mobility patterns between different segments to make more invisible care and other related activities disproportionately performed by groups of women. [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]