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

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

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: 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: 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 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]

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]

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

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

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: Eating disorders in childhood and adolescence negatively affect many areas of development and functioning of children, adolescents, and their families. Psychoeducation has an important role in management and treatment of eating disorders. Methods: A systematic literature review was performed using multiple databases (PsycInfo, PubMed, and Web of Science). The inclusion criteria comprised empirical studies of psychoeducation for patients with eating disorders or their caregivers. The study reporting quality was assessed with the revised Cochrane Collaboration's risk of bias tool and the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields for non‐randomized studies. Results: Ten studies met the inclusion criteria, in three of which the interventions were patient‐centred and in seven of which the interventions were caregiver‐centred. The studies differed in terms of methodology, outcome measures, and quality. The results suggest that psychoeducation is an effective intervention for children, adolescents and caregivers in the treatment of eating disorders. It may lead to weight gain, a decrease in eating disorder symptoms, and a reduction in caregiver burden. Conclusions: There is a need for more randomized controlled trials to determine the effectiveness of psychoeducation for children, adolescents and caregivers in treatment of eating disorders. Key points: Eating disorders in childhood and adolescence negatively impact many areas of development and functioning in children, adolescents, and their families.Psychoeducation for children, adolescents and parents plays an important role in the treatment of eating disorders.Psychoeducation can lead to positive outcomes for patients, their caregivers or both. It can lead to weight gain, a decrease in eating disorder symptoms, and a reduction in caregiver burden.Psychoeducation appears to be an effective treatment for eating disorders, but there is a need for more randomized controlled trials in this area. [ABSTRACT FROM AUTHOR]

The objective of this study was to develop a benchmark method to identify best practices in higher education across the country, in relation with management practices of academic productivity gender gaps and their impact on family responsibilities. This paper uses a qualitative approach to collect relevant information from official web pages from sixteen international universities previously selected. All information related to best practices policies implemented in each university was charted and assigned to one of the following categories for further analysis: ranking, gender policies, gender gaps, academic productivity, and childcare responsibilities. Results from this study revealed that the main best practices implemented in the included universities were practices related to harassment prevention, gender equality at college admission, development of protocols, leadership training, scholarships for study and research programs, adequate infrastructure, childcare financial support, flexible work schedules, family leave policies, improvement of the work environment and the development of departments in charge of follow-up and regular assessment of the proposed strategies. [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]

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]

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]

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: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study. Methods: The IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS. Findings: In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard. Conclusions: There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling. Accessible Summaries: When the parents of people with intellectual die or can no longer provide care and support, brothers and/or sisters may take over the role.Little is known about the lives of these brothers and sisters and whether they need support.Our study asks brothers and sisters about their lives, their health and the good and more difficult things about being a carer.This paper reports on the results of four surveys over 9 years.Most brothers and sisters felt that their health was good but because many reported health problems, more support should be available to brothers and sisters who are carers. [ABSTRACT FROM AUTHOR]

To update on and describe the role of Disease Specific Programmes (DSPs), a multi-perspective real-world data (RWD) source, in the context of the evolution of the value and acceptance of real-world evidence (RWE) in clinical, regulatory and guideline decision-making. DSPs are multi-national, multi-subscriber, multi-therapy cross-sectional surveys incorporating retrospective data collection from patient, caregiver and physician perspectives. Information collected covers the patient journey, including treatment/prescribing patterns and rationale, patient-reported outcomes, impact on work and everyday activities, attitudes towards and perceptions of the condition, adherence to treatment and burden of illness. Published peer-reviewed DSP papers were aligned with current key RWE themes identified in the literature, alongside their contribution to RWE. RWE themes examined were: using RWE to inform clinical practice, patient and caregiver engagement, RWE role in supporting health technology assessments and regulatory submissions, informing value-driven healthcare decisions, real-world patient subgroup differences and therapeutic inertia/unmet needs; highlighting patients' and caregivers' experience of living with a disease, disconnect from their physicians, unmet needs and educational gaps. DSPs provide a wealth of RWD in addition to evidence generated by registries, clinical trials and observational research, with wide use for the pharmaceutical industry, government, funding/regulatory bodies, clinical practice guideline insights and, most importantly, informing improvements in people's lives. The depth, breadth and heritage of information collected via DSPs since 1995 is unparalleled, extending understanding of how diseases are managed by physicians in routine clinical practice and why treatment choices are made, patients' perceptions of their disease management, and caregiver burden. [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]

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]

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]

Metaphors are valuable tools of expression, which give meaning to situations and allow the spontaneous processing of feelings and emotions. As therapists, we can support clients to develop and create their individual metaphor to explain their own meaning of experiences or communicate their perception of problems. Creativity provides us with a rich landscape to explore, expand, and enrich ourselves as therapists and consequently our clients. As systemic therapists, we are responsible for the co‐creation of a human process, which has at its core safety in allowing expression, connection, and movement. Through a respectful and curious approach, we can develop pathways to tap organically into our 'creative selves' while reaching into our clients' creativity and selves as catalysts for connection and positive change. Creative resources and therapies have been successfully used in psychotherapy to enhance the mental and emotional well‐being of children, particularly children with autism who have limited verbal capacity or who are non‐verbal. These children also wish to be understood in expressing their thoughts and feelings; however, they use other methods of communication – sometimes obvious, sometimes not. Therefore, it is important that a therapist can access diverse ways to support the child through this process. The creative use of animals in therapy neutralises spaces, eliciting calm, safety, and healing. This is particularly the case when working with this group of children. This paper is derived from my conversation with an elder statesman of the family therapy profession, Professor Carmine Saccu. He is a jovial master storyteller who craftfully communicates via metaphors. Through creative means, play, and humour, he has developed a remarkably unique way of working with children, especially non‐verbal children with autism. He uses his canine, co‐therapist Mafalda, as a powerful resource and intervention strategy to safely elicit engagement and connection in the therapeutic space. [ABSTRACT FROM AUTHOR]

Background: Psychological interventions for managing emotional distress in neurodegenerative diseases are needed, but progressive worsening of symptoms and increasing disability might pose difficulties with engagement. We aimed to synthesise the experiences of engaging with and using psychological interventions in neurodegenerative diseases and identify relevant barriers and facilitators. Methods: Systematic searches were conducted in six electronic databases and results were screened. We included qualitative and mixed methods studies reporting patient or caregivers' views or experiences of psychological interventions. Qualitative data were extracted and thematically synthesised. Results: 34 papers were included, covering a range of diseases and interventions. Engagement was facilitated by flexible intervention formats and tailoring to the specific needs of people with neurodegenerative diseases. Interventions were sometimes inaccessible or burdensome because of physical and cognitive symptoms, and the time and effort required for the intervention. Participants' levels of acceptance and readiness often differed and influenced engagement with the intervention. Across different interventions, participants experienced wide-ranging benefits including changes in insight, perspective, self-efficacy, emotions and relationships. Conclusion: Although people with neurodegenerative diseases and caregivers experience benefits from psychological interventions, burden-reducing adaptations and sensitive tailoring to the specific disease context is required to improve acceptability and engagement. [ABSTRACT FROM AUTHOR]

Background: At-home self-collection of specimens has become more commonplace because of measures taken in response to the coronavirus pandemic. Self-collection of hair cortisol is important because chronic stress is present in many populations, such as older adults living with Alzheimer's disease and their family caregivers. For the evaluation of chronic stress, scalp hair can be used as a predictive biomarker because it examines the cumulative, retrospective stress from previous months. Objectives: The aim of the paper is to provide a study procedure for at-home, scalp hair self-collection for cortisol concentration analysis from dyads consisting of a person living with Alzheimer's disease and their family caregiver. Methods: After informed electronic consent is obtained, a package containing the necessary tools for self-collection of hair samples from the dyad ismailed to the participant's home. Participants are provided detailed print and videomultimedia guides outlining how to obtain the hair samples. Ideally, the hair samples are obtained during the virtual data collection meeting with research personnel. Participants mail back the hair sample in a prepaid package to the biomedical laboratory for analysis. Discussion: At-home, self-collection of hair provides potential advantages such as reduced participant burden, especially for vulnerable populations where transportation and different environments are challenging. At-home sample collection options may increase research participation and can be applied to multiple research foci. Research considerations for dyads, such as people living with Alzheimer's disease and their caregivers, are discussed. [ABSTRACT FROM AUTHOR]

Identifying and locating areas – hot spots – that present high concentration of observations in a high-dimensional data set is crucial in many data processing and analysis methods and techniques, since observations that belong to the same hot spot share information and behave in a similar way. A useful tool towards that aim is the reduction of the data dimensionality and the graphical representation of them. In the present paper, a new method to identify and locate hot spots is proposed, based on the Andrews curves. Simulations results demonstrate the performance of the proposed method, which is also applied to a high-dimensional data set, regarding caregiver distress related to symptoms of people with neurocognitive disorder and to the mental effects of the recent outbreak of the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

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

Accessible Summary: What is known on the subject: Internationally, research and policy agendas recommend that family caregivers of service users in mental health care be involved in care and treatment, to support the service user's recovery process.Family caregivers of service users in mental health care are often highly burdened.There is a lack of research‐based knowledge about the experiences of family caregivers of service users in forensic mental health care (FMHC) and their involvement in care and treatment. What this paper adds to existing knowledge: This study indicates a persistent caregiver presence and/or caregiver advocacy in regard to care and treatment of the service user in FMHC.This study indicates that health care professionals (HCPs) might play a role in eliciting a persistent caregiver presence and/or caregiver advocacy. What are the implications for practice: HCPs need to develop their collaborative skills and be more willing to listen to and understand caregivers' persistent presence and/or advocacy.HCPs need to be more skilled to understand caregivers' and families' living with the complexities of mental illness and offence.HCPs are encouraged to adjust the involvement of family caregivers in care and treatment to FMHC. Introduction: There is a lack of research about experiences of family caregivers of service users in forensic mental health care (FMHC) and their involvement in care and treatment. Research shows that caregivers are burdened. Further knowledge is required, to provide a foundation for improving clinical practice. Aim: To review research literature, to investigate existing knowledge about caregiver experiences and, secondly, caregivers' experiences of facilitators and barriers related to their involvement in care and treatment. Method: Qualitative evidence synthesis undertaken in a thematic synthesis of thirteen peer‐reviewed studies. Results: The analysis identified three descriptive themes: violence against family; a great burden of responsibility; and difficult collaboration, together with an additional three analytical themes: bearing witness; persistent presence; and advocacy becomes necessary. Discussion Persistent caregiver presence and/or caregiver advocacy may be elicited by health care professionals' (HCPs') exclusion of caregivers from care and treatment. Caregivers' feelings of guilt in relation to the service user's offence may play an additional role in persistent presence and advocacy and, therefore, in HCPs' exclusion of them. Implications for Practice: HCPs need to develop their collaboration with caregivers by their willingness to listen to caregivers to understand emotional complexities within families experiencing mental illness and offence. [ABSTRACT FROM AUTHOR]

Background: Gaucher disease (GD) is a rare autosomal recessive lysosomal storage disorder. GD types 2 and 3 are known as neuronopathic Gaucher disease (nGD) because they have brain involvement that progresses over time. Implementing a systematic approach to the collection of real-world clinical and patient-relevant outcomes data in nGD presents an opportunity to fill critical knowledge gaps and ultimately help healthcare providers in the management of this patient population. This paper summarizes the development of a patient-initiated Gaucher Registry for Development Innovation and Analysis of Neuronopathic Disease (GARDIAN). Methods: The International Gaucher Alliance led the GARDIAN planning, including governance, scope, stakeholder involvement, platform, and reporting. Registry element input was determined in a series of meetings with clinical experts, patients, and caregivers, who identified key clinical variables and the draft content of nGD patient-reported outcomes (PRO) and observer-reported outcomes (ObsRO) focusing on symptoms, patient physical and emotional functioning. These were then tested in cognitive interviews with patients with nGD (> 12 years of age) and caregivers. Results: Core registry data elements (n = 138) were identified by seven global clinical experts from Egypt, Germany, Israel, Japan, United Kingdom (UK), and United State (US) and reviewed via online Delphi method by 14 additional clinicians with experience of nGD from six countries and three pharmaceutical representatives. The elements were consistent with those identified via interviews with 10 patients/caregivers with nGD from Japan, Sweden, UK, and US. Key domains identified were demographics, diagnostic information, health status, clinical symptomatology, laboratory testing, treatment, healthcare resource utilization, aids/home improvements, and patient/caregiver burden and quality of life, specifically physical functioning, self-care, daily and social activities, emotional impacts, support services, and caregiver-specific impacts. Nine caregivers and six patients from the US, UK, China, Mexico, Egypt, and Japan participated in the cognitive interviews that informed revisions to ensure that all items are understandable and interpreted as intended. Conclusions: The comprehensive set of clinical and patient relevant outcomes data, developed collaboratively among all stakeholders, to be reported using GARDIAN will bridge the many gaps in the understanding of nGD and align with regulatory frameworks on real-world data needs. [ABSTRACT FROM AUTHOR]

Family members provide significant amounts of unpaid care to aging, chronically ill, and disabled persons in their homes. They often do this with little education or support and commonly report feeling overwhelmed and stressed. Providing education and support to family caregivers has demonstrated benefit on the health and well-being of the caregiver and care-receiver. However, because "caregiver" is not a reimbursable category in health care, caregiver interventions need to be delivered in a cost-efficient way. Technology-delivered and self-administered intervention models are increasingly being recommended as a pragmatic way to support aging families in our communities. This paper outlines the redevelopment of two behavioral interventions to an exclusively online delivery. This case-study analysis presents a model for community-engaged intervention research practices, which have the potential to create interventions that are more sustainable and more likely to be implemented than those designed and tested with more traditional research methodology. [ABSTRACT FROM AUTHOR]

With changes in life style and dietary structure, the global prevalence of nonalcoholic fatty liver disease (NAFLD) is increasing year by year, posing a serious burden on health care systems. While clinicians’understanding of the pathophysiological mechanisms of NAFLD continues to improve, effective treatments are still being explored, and life style interventions remain the first⁃ line therapy for NAFLD as recommended by numerous guidelines and physicians. Sleep is a complex, highly regulated process that is critical to human health. There is a growing consensus that sleep disorders are closely associated with chronic liver disease, especially NAFLD. However, it is not clear how sleep disorders affect NAFLD. Therefore, the purpose of this paper is to review the relationship between sleep disorders and NAFLD and to enable NAFLD patients to make life style changes, which will benefit NAFLD patients. [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]

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]

Background : Informal caregivers of people with dementia are crucial in dementia care. However, they are insufficiently supported and report caregiver burdens, which urges the need for cost-effective interventions aimed at supporting caregivers. This paper presents the design of a study evaluating the effectiveness, cost-effectiveness, and cost-utility of a blended self-management program for early-stage dementia caregivers. Methods/design: A pragmatic, cluster randomized controlled trial with a shared control group will be conducted. Participants will be informal caregivers of people with early-stage dementia and will be recruited by local care professionals. Randomization will be carried out at the level of the care professional level in a ratio of 35% to 65% (control arm vs. intervention arm). Participants in the control arm will receive care as usual and the intervention arm will receive the blended care self-management program "Partner in Balance" within a usual care setting in the Netherlands. Data will be collected at baseline and at 3-, 6-, 12-, and 24-month follow-ups. The primary outcome for effectiveness (part 1) is care management self-efficacy. For the health-economic evaluation (part 2) total care costs and the quality of life for individuals with dementia (cost-effectiveness) and quality-adjusted life years (cost-utility) will be the base case analysis. Secondary outcomes (parts 1 and 2) will include depression, anxiety, perceived informal caregiving stress, service-use self-efficacy, quality of life, caregivers' gain, and perseverance time. A process evaluation (part 3) will investigate the internal and external validity of the intervention. Discussion: In this trial, we plan to evaluate the effectiveness, cost-effectiveness, and cost-utility of "Partner in Balance" among informal caregivers of people with dementia. We expect to find a significant increase in care management self-efficacy, and the program to be cost-effective, and provide valuable insights to stakeholders of "Partner in Balance." Trial registration: ClinicalTrials.gov, NCT05450146. Registered on 4 November 2022. [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]