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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]

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: 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]

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]

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]

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: 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]

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]

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]

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: 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]

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: 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: 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]

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 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]

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]

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: 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]

Background: Little is known about the effectiveness and implementation of psychosocial interventions for psychosis in low- and middle-income countries (LMICs). In South Asia, specialist psychiatric resources are scarce. Support for psychosis often falls on the family or caregiver which can increase feelings of burden, impact caregivers' wellbeing, and increase mental health stigma. Psychosocial interventions are increasingly used for psychosis in South Asia and could reduce relapse and symptoms, reduce caregiver burden, conserve cost and resources. The aim of this review was to appraise the effectiveness and implementation readiness of psychosocial interventions for people with psychosis in South Asia. Method: A systematic search was conducted on MEDLINE, PsycINFO, Global Health, and Web of Science. The review was prospectively registered on PROSPERO (CRD42022329254). Studies were rated on two scales assessing quality and implementation readiness. Results: Twenty-six papers were included, nine intervention-types including community-based interventions/assertive outreach; CaCBTp; FAP; psychoeducation; cognitive retraining/rehabilitation; social cognition/skills; family/ caregiver intervention; telehealth intervention; yoga-based intervention in six South Asian countries. Findings suggest a multicomponent community-based intervention (MCBI) was the most implementation ready due to its standardisation, good clinical outcomes for patients and caregivers, and training and cost evaluations. Conclusion: Of the included studies, MCBI and community-based outreach interventions utilising lay health workers appear to be the most implementation ready and are suggested to best address the treatment gap in South Asia. [ABSTRACT FROM AUTHOR]

This paper examines, both theoretically and empirically, the relationship between rapid‐onset disasters and women's economic freedom. Rapid‐onset disasters create difficulties for all involved, but without proper discussion of and changes to women's economic status in society, they will continue to suffer disproportionately. The study answers the following question: 'how do disasters impact women's economic empowerment?'. It argues that there are underlying factors contributing to unequal economic opportunities that are exacerbated by disasters. Current literature discusses how disasters affect women's economic and political rights, but often it does not account for variables that may not have been captured in contemporary indices. The paper assesses women's burden of care, restrictions on mobility, formal economic employment, and access to recovery resources with respect to their economic empowerment. And it analyses 180 countries and territories that experienced disasters between 1981 and 2019 to uncover their effects on women's economic freedom. This research could facilitate and help to alter the overall narrative on women's empowerment. [ABSTRACT FROM AUTHOR]

Introduction: Shortened hospital stays have shifted the burden of care for older adults to community, informal (ie, family, caregiver) and formal post-acute care and services, highlighting the need for effective post-hospital stay services and programs. As there is a dearth of information related to community-based, slow-stream rehabilitation program models for older adults transitioning from hospital to home in the Canadian context, the paper describes a mixed methods evaluation of such a program.Materials and Methods: A mixed methods program evaluation, with process- and outcome-related elements, included 1) review and analysis of program documents; 2) observations to examine fidelity. Observation data were coded and summarized using descriptive statistics. Coded information and data were compared to document review data; 3) quantitative assessment of pre-post changes in physical, social, and psychological outcome measure and instrument scores using descriptive statistics, paired t-tests and confidence intervals (p = 0.05); and 4) exploration of acceptability through interviews and focus groups with 41 of the older adult participants and 17 family caregivers. Thematic analysis was used to examine focus group and interview transcripts.Results: Observational data indicated alignment with the program document information overall. Statistically and clinically significant positive trends in improvement for physical outcome measure scores were observed (6-minute Walk Test, Life Space Assessment, Short Physical Performance Battery, Rapid Assessment of Physical Activity). Participants and family caregivers identified several positives and benefits of the program, ie, improvement in physical, social and mental well-being, decreased caregiver burden; and areas for improvement ie, need for more information about the program prior to enrollment and individualization, several of which aligned with the observation and quantitative data.Discussion/Conclusion: This mixed methods program evaluation provided a detailed description of a community-based, slow-stream rehabilitation program for older adults who are transitioning to home post-hospital stay and its participants. Evidence of program fidelity, acceptability, and positive trends in improvement in physical outcome measure scores were found. Information about program strengths and areas for improvement can be used by stakeholders to inform program refinement and enhancement. [ABSTRACT FROM AUTHOR]

The incidence of dementia is increasing rapidly with nearly 7 million currently and projected to triple by 2050. As of 2020, there are 53 million informal caregivers. Twenty-four percent of these informal caregivers are caring for persons living with dementia. Informal caregivers experience an exorbitant amount of stress and strain causing decreased quality of life and less energy to provide the care needed as well as personal health issues. Predictions of increased incidence of dementia, as well as concerns for shortages of informal caregiver availability make the concern for caregiver burden a critical issue. Decreasing caregiver burden is a goal of intervention. The palliative care doula (PCD) provides one possible intervention. This paper examines the psychometric measures of five different instruments intended to quantify the level of caregiver burden experienced with and without the intervention of a relationship with a PCD. The most appropriate tool to utilize is the Zarit Burden Interview-12 for this population. Further research is needed to provide pragmatic, patient centered outcomes that will address this public health caregiving crisis. [ABSTRACT FROM AUTHOR]

Accessible Summary What is known about the subject What the paper adds to existing knowledge What are the implications for practice Introduction Aim Method Results Discussion Implications for Practice Caring for a family member with a mental illness induces a burden on the caregiver, an impact on their quality of life and premature ageing of more than ten years. We conducted systematised and individualised nursing interviews with family members, on the first days of a relative’s hospitalisation, during hospitalisation and three months after discharge. We observed persistent depressive symptoms during and after hospitalisation. Burden and depression were higher, and quality of life was lower, for women caregivers and when the caregivers admitted the patients involuntarily in the hospital ward. When the caregivers were experiencing a patient’s first hospitalisation, we also found higher depressive symptoms and lower quality of life. This study emphasises the need for new interventions such as psychoeducation to alleviate the suffering of families. Considering the burden of families could become a prevention objective from the patient’s first hospitalisation and prevent them from mental or physical health problems. The burden consequent to providing care to patients with psychiatric chronic conditions is often overlooked by health professionals.We assessed the impact of patients' psychiatric hospitalisation on their caregivers, through evaluating their suffering, burden and quality of life, in three stages: upon the patients' admission, their discharge and 3 months after their discharge.In total, 127 caregivers of adult patients whose first hospitalisation was less than 5 years ago were assessed using the 36‐item Short‐Form Health Survey, the Zarit Burden Interview and the Center for Epidemiologic Studies Depression scale.Females and caregivers who admitted patients against their will experienced higher burden and depression and lower mental quality of life. We also found higher depressive symptoms and lower quality of life among caregivers during a patient's first hospitalisation. The caregiver's familial relationship to the patient was not associated with these outcomes. Finally, burden decreased and quality of life increased over time.Results suggest that several variables associated with patient hospitalisations were correlated with burden, depression or quality of life.Burden could be targeted with interventions such as group psychoeducation for caregivers during or after the patient's hospitalisation, in order to reduce their distress and improve their quality of life. Psychiatric and mental health nurses can provide support to caregivers with systematic assessments of their burden and quality of life, so as to better meet their needs and promote their ability to cope with mental illness. [ABSTRACT FROM AUTHOR]

• Standard medical and behavioral treatment for encopresis is not always effective. • Some children resist toilet training due to fear of defecation outside a diaper. • A diaper fading protocol was used to train four children with toilet refusal. • The protocol flexibly adapted to individual patient needs. Childhood constipation and painful defecation is common, affecting 68% to 86% of children. Over 90% withhold stool, some only defecating in a diaper. Behavioral therapy is effective for encopresis, but there is minimal research on treating toilet avoidance. This study investigates a novel protocol to eliminate diapers in children with toilet avoidance. A diaper fading protocol was used with four children with toilet avoidance. Children were instructed to defecate in the bathroom, moving progressively closer to the toilet until they eventually sat on the toilet with the diaper. As needed, diapers were then faded by cutting increasingly wider slits in the base of the diaper so that stool could pass into the toilet. The cut widened until the diaper was eliminated entirely. Four children (three boys, average 5.22 years old) successfully completed toilet training using the diaper fading protocol in an average of 9.75 sessions. Delivery of treatment via telehealth was shown to be effective. The diaper fading protocol effectively and flexibly assisted toilet training in four children with stool withholding and toileting avoidance. Future work should investigate whether caregivers can utilize the protocol without ongoing support, or on a consultation basis only, to reduce the burden on health care workers with long waitlists. [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]

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]

Background: Artificial nutrition and hydration (AN&H) may be provided to individuals in the home environment, and family caregivers are often involved in the management of this intervention. This experience can have multiple consequences for families. Aims: The aim of this meta‐ethnography is to explore and synthesize the personal experiences of family caregivers providing care to a person receiving home AN&H. Methods & Procedures: A comprehensive search of the literature was conducted without any time limitations applied. Seven stages of meta‐ethnography were followed. Public and patient involvement was incorporated into the development of the line of argument synthesis in this review. This review is reported following the eMERGe guidelines and it was registered in PROSPERO. Main Contribution: A total of 22 studies were included representing the experiences of 336 family caregivers. Two main themes emerged: (1) sink or swim, being thrown in at the deep end; and (2) professional support as a bedrock. The first theme represents the experiences from the very start of home AN&H when the family caregivers may be overwhelmed with the level of skills they have to acquire. With time, family caregivers perceived the benefits, but also the challenges, associated with managing home AN&H. If a person receiving home AN&H was able to continue with some oral intake, it had a positive impact on family caregivers' experiences. The second theme represents the influence of professional support on the lived experience of family caregivers managing home AN&H. This support should be individualized, comprehensive, and co‐created with the family caregiver and the person receiving home AN&H. Conclusions & Implications: This review concluded that caring for a person receiving home AN&H can be very challenging for family caregivers. Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to acquire skills, competence and confidence in this new role. Speech and language therapists are important members of this multidisciplinary team because they can facilitate a continuation of oral intake as appropriate. WHAT THIS PAPER ADDS: What is already known on the subject: AN&H has an impact not only on the person receiving it but also on the wider family and family caregivers. Healthcare professionals have a role in supporting people living with AN&H. What this paper adds to existing knowledge: This review presents a rigorous qualitative evidence synthesis that adheres fully to the eMERGe guidance for reporting of meta‐ethnography. Within this meta‐ethnography a current caregiver was consulted during the creation of the line of argument synthesis to provide a unique perspective to the review process. This review synthesized the current body of evidence that explores the lived experience of home AN&H (any type) for family caregivers, identifies where professional support is required and highlights current gaps. What are the potential or actual clinical implications of this work?: Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to adjust to living with home AN&H. This support assists people living with home AN&H in perceiving benefits and developing more positive experiences. Speech and language therapists are important members of the multidisciplinary team supporting individuals with home AN&H and their family caregivers as they can facilitate a continuation of oral intake as appropriate. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to identify the difficulties and overload/burden experienced by family caregivers of older dependent people during the COVID-19 outbreak. Design/methodology/approach: A descriptive and cross-sectional study was conducted. This work was guided according to the Guideline strengthenin the reporting of observational studies in epidemiology (EQUATOR checklist). The study included 65 family caregivers of older people with physical or mental dependence. Caregivers were selected by convenience sampling through a national association of informal caregivers. Participants responded to an online questionnaire, which aimed to assess difficulties and burdens experienced during the pandemic. Ethical principles were followed throughout the research. Findings: The participants were mostly women, with an average age of 53 years, teleworking and cohabiting with the dependent elderly. Most caregivers reported that the pandemic has led to an increase in daily difficulties and associated burden. There was a statistically significant increase in hours devoted to care during the pandemic. Also, caregivers reported less time to take care of themselves and greater fatigue during this period. Research limitations/implications: This study had some limitations. For example, the small sample size. The sample was collected through an online version, and many caregivers did not have the digital skills needed to complete the questionnaires, and most of them were busy (divided between teleworking and household responsibilities). Another limitation was related to the perceived priority of caregivers because the majority of them considered this was a time-consuming study and saw no immediate benefits. Furthermore, they considered that this study has taken their time to manage all the provision of care to the elder relative and other activities related to their children who were also in quarantine. Finally, to date, there is no sufficient evidence to compare our results with other national and international studies. Further research is needed to allow the scalability of results and to apply the best available knowledge to mitigate the known and potential effects of this pandemic. Practical implications: This study highlighted that frontline caregivers suffered a negative impact on their physical and mental health, in addition to a significant economic burden during the pandemic outbreak. More research in this field is needed to plan, train and manage large-scale public health emergencies. Social implications: The COVID-19 pandemic imposed physical distancing, which profoundly affected the physical and mental health of community-dwelling older people and their family caregivers. Because of the confinement and closure of some social support institutions, family caregivers found themselves in a complex situation, having to reconcile care and teleworking. Therefore, it is important to identify the impact of the COVID-19 pandemic on the difficulties and burden of these caregivers to implement and develop social and health support measures. Originality/value: This paper addresses an increasingly important issue – the burden and difficulties of family caregivers, in the light of a new reality – the Covid-19 pandemic, which has brought new difficulties for this population. [ABSTRACT FROM AUTHOR]

Background: Bloodstream infections increase morbidity and mortality in hospitalized patients and pose a significant burden for health care systems worldwide. Optimal blood culture diagnostics are essential for early detection and specific treatment. After assessing the quality parameters at a surgical intensive care unit for six months, we implemented a diagnostic stewardship bundle (DSB) to optimize blood culture diagnostics and then reevaluated its effects after six months. Material and Methods: All patients ≥18 years old and on the ward were included: pre-DSB 137 and post-DSB 158. The standard quality parameters were defined as the number of blood culture sets per diagnostic episode (≥2), the rate of contamination (2–3%), the rate of positivity (5–15%), the collection site (≥1 venipuncture per episode) and the filling volume of the bottles (8–10 mL, only post-DSB). The DSB included an informational video, a standard operating procedure, and ready-to-use paper crates with three culture sets. Results: From pre- to post-interventional, the number of ≥2 culture sets per episode increased from 63.9% (257/402) to 81.3% (230/283), and venipunctures increased from 42.5% (171/402) to 77.4% (219/283). The positivity rate decreased from 15.1% (108/714) to 12.8% (83/650), as did the contamination rate (3.8% to 3.6%). The majority of the aerobic bottles were filled within the target range (255/471, 54.1%), but in 96.6%, the anaerobic bottles were overfilled (451/467). Conclusions: The implementation of DSB improved the quality parameters at the unit, thus optimizing the blood culture diagnostics. Further measures seem necessary to decrease the contamination rate and optimize bottle filling significantly. [ABSTRACT FROM AUTHOR]

Background: Many caregivers are insufficiently prepared, and little is known about measures that can be employed to enhance their preparedness. Aim: The aim of this study was to explore the factors associated with caregiver preparedness and establish a predictive model including the relationship between preparedness, burden, resilience and anxiety. Design: A cross‐sectional design was used. Methods: The sample included 172 family caregivers who were selected from one private hospital and daytime nursing centres. Caregivers were recruited from 2018 to 2019; they completed assessments for caregiver preparedness, anxiety, resilience and burden. A multiple linear regression analysis was performed to identify the factors associated with preparedness. Results: Preparedness was significantly associated with high levels of resilience and a low level of burden, while it was not associated with anxiety. Caregivers' gender, experience and cohabitation status were the main predictors. Resilience is an explanatory factor for caregiver preparedness in the predictive model. Conclusion: The demographic variables related to preparedness can be used to guide efforts to meet the needs of vulnerable caregivers. A caregiver's preparedness depends on their level of burden and resilience. Nursing interventions focused on these aspects could make the caregiver's role easier and improve the quality of care provided. Summary statement: What is already known about this topic? Many caregivers are inadequately prepared for this role, and ensuring adequate preparedness is important for family caregivers.Preparedness and factors predictive of this in Spanish family caregivers have not been well‐documented.Resilience, burden and anxiety affect caregivers, but the degree to which they influence caregivers' preparation levels is unknown. What is the contribution of this paper? Specific factors influence the preparedness of family caregivers. Men and caregivers who do not cohabit in the same household with the care‐dependent person may present greater deficits in preparedness. Moreover, poor health and lack of experience in caring can result in inadequate caregiving performance.Readiness, resilience and burden are significantly related, and the best predictor of family caregivers' preparedness is resilience.Resilience leads to greater preparedness in caregivers, and better‐prepared caregivers experience a lighter burden. What are the implications of this paper? Knowing the factors associated with preparedness in advance will allow health‐care professionals to prevent deficits in vulnerable family caregivers.Resilience is a decisive factor which prevents negative consequences such as low preparedness. A resilient coping style can diminish the burden and promote successful adaptation in caregivers. [ABSTRACT FROM AUTHOR]

Aims: This study aimed to investigate the relationship between family caregivers' health‐related quality of life and health outcomes in care recipients. Methods: A total of 160 female caregivers in Japan were initially assessed using self‐reported baseline questionnaires to determine physical and mental aspects of their health‐related quality of life. Based on these scores, they were divided into three groups: lower, middle, and higher quality of life. We followed up with the 133 participants (after excluding those that did not respond) 6 years later to assess the health of their care recipients; 36 caregivers continued to provide home care, while 97 reported that their care recipient had died or been admitted into institutionalized care. Results: Statistically, a higher risk for care recipients' health deterioration was strongly associated with the mental component score in the lower caregivers' quality of life group of than for the middle group, after adjusting for the care recipients' age, health status, and caregivers' age at baseline. There was no significant association between deterioration of health of care recipients and physical component scores of the caregivers. Conclusion: Caregivers' poor health‐related quality of life, particularly poor mental health, may be linked to the deterioration of care recipients' health. Summary statement: What is already known about this topic? Family caregivers reportedly have lower quality of life than noncaregivers.While factors associated with decreased quality of life of caregivers such as high caregiving burden and longer care duration are being identified, they remain difficult to prevent.Lower caregiver quality of life may negatively influence the care recipients. What this paper adds? Poor mental health in caregivers, calculated with health‐related quality of life scores, is associated with health deterioration of care recipients.Physical health in caregivers is not associated with health deterioration of care recipients. The implications of this paper: Support for improving the health‐related quality of life of caregivers is necessary, especially in relation to their mental health, from the viewpoint of maintaining the health status of care recipients. [ABSTRACT FROM AUTHOR]