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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]

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

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]

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

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

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

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

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

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

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

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (Mage = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha =.93) and test–retest (ICC =.95) reliability. Scores were normally distributed and sensitive to age (r = −.19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = −.35), and challenging behaviors (r =.57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children. [ABSTRACT FROM AUTHOR]

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

Background: 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]

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

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

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

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

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

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

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

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

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

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

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

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

To find a way to realize sustainable development, this paper applied a cross-sectional ARDL (CS-ARDL) method to explore the interaction between carbon emissions, economic development, and health care expenditure for OECD countries. Firstly, we conduct a cross-sectional test to check whether the data is confronted with this issue. Secondly, we conduct a panel unit root test and cointegration test to confirm whether the ARDL-based method is suitable for our data. Thirdly, we analyze the results and provide possible explanations. Lastly, we conduct a short-term causality test to detect the connection between different variables. The main conclusion of our study includes: 1) Health care is a necessity in OECD countries. 2) Environmental deterioration places a heavy burden on health care expenditure in OECD countries. 3) Health care expenditure of last year negatively affects health care expenditure. 4) There is a short-run causality relationship from CO2, economic development, and dependency rate of youth to health care expenditure in OECD countries. Related policy proposals are provided according to our analysis of the results. [ABSTRACT FROM AUTHOR]

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

Background: 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]

Older carers play a vital role supporting population health and protecting health and social care systems, yet there has been little research on understanding the effect of the pandemic on this group. In this paper, we investigate caring as a factor contributing to mental and self-rated health. We investigate cross-sectional and longitudinal associations between provision of family care and mental health and wellbeing using longitudinal data from 5,149 members of the English Longitudinal Study of Ageing who responded to Wave 9 (2018/2019) and two COVID-19 sub-studies (June/July 2020; November/December 2020). We use logistic or linear regression models depending on outcome measures, controlling for pre-pandemic socioeconomic, demographic, and health-related variables. Before the pandemic, 21% of respondents cared for family or friends. Older people caring for someone inside the household mostly continued to provide care during the pandemic, with more than a quarter reporting an increase in the amount of care provided. Co-resident carers were disproportionately female, older, in the lowest wealth quintile, and more likely to report disability and chronic conditions. Both cross-sectional and longitudinal analyses suggest that, compared to those caring for people living outside the household, co-resident carers were significantly more likely to report poorer mental health and self-rated health. The health of older carers worsened disproportionately in the first year of the pandemic, a period also characterised by disruptions to support and closure of respite services. Support for carers' mental and physical health requires greater policy attention, especially in pandemic conditions. [ABSTRACT FROM AUTHOR]

Acute ischemic stroke (AIS) is the most prevalent type of stroke, and due to its high incidence, disability rate, and mortality rate, it imposes a significant burden on the health care system. Amino acids constitute one of the most crucial metabolic products within the human body, and alterations in their metabolic pathways have been identified in the microenvironment of AIS, thereby influencing the pathogenesis, severity, and prognosis of AIS. The amino acid metabolism characteristics in AIS are complex. On one hand, the dynamic progression of AIS continuously reshapes the amino acid metabolism pattern. Conversely, changes in the amino acid metabolism pattern also exert a double-edged effect on AIS. This interaction is bidirectional, dynamic, heterogeneous, and dose-specific. Therefore, the distinctive metabolic reprogramming features surrounding amino acids during the AIS process are systematically summarized in this paper, aiming to provide potential investigative strategies for the early diagnosis, treatment approaches, and prognostic enhancement of AIS. [Display omitted] [ABSTRACT FROM AUTHOR]

Unpaid carers are a significant support for dependent people with chronic illnesses in most countries. Working carers have specific needs because they face a conflict between employment and care. This study reports on the views of seven working carers in Taiwan to discover the factors they might have considered when arranging publicly funded Long-Term Care (LTC) services for the person they care for to reconcile their work and care. According to the testimony of working carers, the issue of safety for care recipients motivates the application for LTC services. However, LTC services in Taiwan, while affordable, are limited. Working carers have a positive attitude towards home care due to its low price and flexible service time. The constructed barriers to accessing daycare make it difficult for families to use daycare, even though it may be the most suitable service for care recipients. The findings have implications for improvements in LTC services. They show that an extension of opening hours of daycare is needed to meet the employment needs of working carers and that care skill training should be offered for providers of LTC services. [ABSTRACT FROM AUTHOR]

Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care. [ABSTRACT FROM AUTHOR]

Background: Dementia is a leading factor in the institutionalization of older adults. Informal caregivers' desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers' DI by mining data from an eHealth platform in a high-prevalence dementia country. Methods: Cross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions. Results: Caregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers' perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1–2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86). Conclusions: This study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing. [ABSTRACT FROM AUTHOR]

Informal caregivers of persons with mental disorders encounter various challenges in their role of caregiving. As such, they require support to enable them to cope with the demands of their caregiving. There is comprehensive evidence on the experiences of burden among informal caregivers in mental health; however, there is a limited number of studies that report on the mental health services aimed specifically at supporting informal caregivers in their role. To address this gap, this study aimed to explore the perspectives of the service providers regarding the challenges encountered by informal caregivers and the mental health services available to support these caregivers. Semi-structured interviews were conducted with mental health coordinators at provincial, district, and sub-district level and mental health professionals from a district hospital. Focus group discussions were conducted with primary healthcare supervisors and community health workers in Bushbuckridge municipality, South Africa at participants' workplaces and sub-district offices. Semi-structured interviews and focus group guides with semi-structured questions were used to direct data collection in August 2022–January 2023. All interviews were audio recorded and transcribed verbatim. Reflexive thematic inductive analysis was conducted using NVivo 12 software. Three themes were identified, namely perceived caregiving consequences and related factors, current state of mental health services, and factors affecting delivery of informal caregiver mental health services. The service providers acknowledged the negative consequences faced by informal caregivers. This includes the experience of caregiver burden which was attributed to the uncooperative and violent behaviours exhibited by the mental health care users. The current state of formal and informal community mental health services was described and considered inadequate to meet informal caregivers' needs. Various personal, health system, and contextual factors influencing the provision of caregiver-orientated services were identified. The findings revealed the need for intersectoral collaborations between hospital-based and community-based mental health service providers, and community stakeholders to ensure provision of user-friendly and accessible mental health services for informal caregivers. [ABSTRACT FROM AUTHOR]

Background: Diagnosis with a brain tumor is a critical event in the lives of patients and their families due to poor medical prognoses and complex clinical care. Spiritual care interventions have been known to have meaningful effects in morbid diagnoses and palliative medicine, but their role in the neuro-oncologic patient's experience is poorly understood. This systematic review explores the role of spirituality and its relevance to patient care in the diverse setting of brain tumors. Methods: A comprehensive systematic review was conducted following PRISMA-SR guidelines. PUBMED was queried for studies on spirituality and neuro-oncology. Identified studies included RCTs, interviews, surveys, and case reports that examined spirituality in neuro-oncological clinical care, quality of life, and patient experience. Of 214 articles identified, 21 studies met the inclusion criteria, and the results were narratively synthesized. Results: Spirituality may play a significant role in mental well-being by reconciling existential questions faced by both patients and caregivers, and can serve as a valuable resource to improve mental well-being and reduce rates of palliative caregiver burnout. However, the paucity of studies examining the education and integration of spiritual awareness within the clinical literature warrants further study. Conclusions: While spiritual care interventions may improve the quality of life and mental wellness of patients and their caregivers, it is unclear how spiritual awareness and education should best be implemented. Further research is needed to better understand how key components of spiritual awareness can be integrated into medical education to deepen the patient–physician relationship and improve clinical experiences. [ABSTRACT FROM AUTHOR]

Background: This study explores heart failure (HF) dyadic contextual factors and caregiver burden during acute exacerbation hospitalization and discharge. Methods: It employed a mixed-methods approach, with HF dyads completing questionnaires and semi-structured interviews at a one-week post-discharge outpatient visit. Quantitative tools included the SF-12 Quality of Life, Zarit Burden Interview (ZBI), Bakas Caregiving Outcomes Scale (BCOS), and Self-Care of Heart Failure Index v. 6 (SCHFI). Thematic analysis was conducted on interview data to assess caregiver burden, disease trajectory, comorbidities, caregiving time, and employment status. Results: Twelve HF dyads participated, with caregivers (six female, six male) averaging 65.76 years. The ZBI indicated a low caregiver burden (median score of 15), but qualitative data revealed a higher perceived burden related to social isolation, future fears, and caregiver dependence. Male caregivers reported a lower burden than females. Positive goal congruence was noted in caregiving hours and HF management compliance. HF patients had a 10-year survival prediction of 22.75% per the Charlson Comorbidity Index, with 69% in NYHA class III and an average ejection fraction of 37.7%. Caregivers working full-time and caring for higher NYHA-class patients showed higher ZBI and BCOS scores. Conclusions: The study highlights the need for mixed methods and longitudinal research to understand HF disease trajectory and caregiver burden, emphasizing the importance of including caregivers in HF education and screening for perceived burden to improve outcomes and reduce re-hospitalizations. [ABSTRACT FROM AUTHOR]

Background: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. Methods: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. Results: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. Conclusions: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses. [ABSTRACT FROM AUTHOR]

Background: Musculoskeletal (MSK) injuries and diseases place a significant burden on the health care system. Despite this, research indicates that physician training in the area of MSK medicine has historically been inadequate, with a majority of medical students feeling that their training in MSK medicine is lacking. The goal of this investigation was to evaluate the efficacy of a new preclinical MSK curriculum that was implemented within a nationally accredited allopathic medical program. Methods: Retrospective analysis was completed on five consecutive years (2017–2021) of preclinical MSK curricular data for 549 medical students, including mid and end-of-course examinations and end-of-course student satisfaction surveys. Both parametric and non-parametric methods of analysis were used to examine within and between class differences (P < 0.05). Results: The new MSK curriculum covered 15 of 16 "core or must know" topics in MSK medicine, and academic performance was consistently high over the 5-year period of analysis (final course marks ranged from 76.6 ± 7.1 to 81.4 ± 8.1; failures/year: range from 0 to 4), being equal or above levels of student performance observed for other courses delivered during preclinical studies. Likert data from end-of-course surveys demonstrated that feedback was overwhelmingly positive (overall course satisfaction ranged from a low of 3.07/4.00 to a high of 3.56/4.00) and indicated that students felt that the new preclinical MSK curriculum did effectively support medical student learning and knowledge retention. Conclusion: Results are expected to help advance the current body of knowledge that is dedicated to improving physician learning and knowledge retention in the area of MSK medicine and provides a curricular model that could be used by other nationally accredited medical programs to help enhance MSK learning at the preclinical levels of physician training. [ABSTRACT FROM AUTHOR]

Background: Effective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool. Aims: This study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool. Methods: According to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted. Results: A total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach's alpha of the Chinese version of CBSFC-CC was.96, and the test–retest reliability coefficient was.95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC. Conclusion: The chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China. [ABSTRACT FROM AUTHOR]

Background: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. Methods: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. Results: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. Conclusion: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. Trial registration: ISRCTN14565552 (retrospectively registered). [ABSTRACT FROM AUTHOR]

Aim: To investigate whether resilience mediates the connection between caregiver burden and hope among caregivers of patients with inflammatory bowel disease (IBD). Design: A cross‐sectional study. Methods: Two hundred patients with IBD were conveniently sampled from two tertiary hospitals in Jiangsu Province, China. The main instruments involved the Zarit Burden Interview, the 10‐item Connor‐Davidson resilience scale, and the Herth Hope Index. We conducted descriptive analysis and Pearson correlations using SPSS 25.0. The PROCESS v3.3 macro analysed the mediating effect. We report the results in line with the STROBE checklist. Results: Caregiver burden was significantly negatively connected with hope and resilience, whereas resilience positively correlated with hope. The mediation role of resilience was significant in the relationship between caregiver burden and hope, with mediating effects accounting for 47.86% of the overall effect. Conclusions: Resilience partially mediates the association between caregiver burden and hope among patients with IBD. This finding highlights the protective role of resilience in undermining caregiver burden and strengthening hope. Implications for Practice: In clinical practice, healthcare providers should perform routine psychological assessments for caregivers of patients with IBD. Furthermore, resilience training should be incorporated into interventions to alleviate caregiver burden and enhance hope. Patient or Public Contribution: None. [ABSTRACT FROM AUTHOR]

Providing care to a patient with cerebral palsy can have many negative impacts upon caregivers. This study was carried out to define caregiving burden in the caregivers of cerebral palsy patients and determine the relationships between religious coping, fatalism, and burden of care. This cross-sectional and correlational study included 132 caregivers. Data were obtained using the Religious Coping Scale, the Fatalism Scale, and the Caregiver Burden Scale. It was determined that 18.9% of the participants experienced a heavy care burden. The luck and pessimism dimensions of the Fatalism Scale were positively and weakly correlated with caregiving burden (p < 0.01), while there was no correlation between caregiving burden and positive or negative religious coping styles (p > 0.05). Perception of fatalism explained 10% of the total variance in caregiving burden (R = 0.329, R2 = 0.109, F = 5.195, p = 0.002). It is recommended that caregivers be supported by religious experts to strengthen positive religious coping styles and advisable fatalism perceptions. [ABSTRACT FROM AUTHOR]

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved. [ABSTRACT FROM AUTHOR]

Introduction: Global aging presents socioeconomic and health challenges. Dementia, a growing concern, affects millions of older adults, intensifying the burden on family caregivers. E-health interventions offer hope through technological solutions, although current research is limited. This study evaluated the effectiveness of internet-based or mobile app interventions for family caregivers of older adults with dementia. Methodology: A systematic review with a narrative synthesis was conducted using databases (PubMed, CINAHL, Scopus, LILACS, and PsycInfo) and the bibliographies of retrieved articles, with no restrictions on time or language. Results: The search yielded 2092 results, of which 22 studies met the inclusion criteria, encompassing a total of 2761 family caregivers. Twenty-one different outcomes were evaluated and classified into three main types of interventions: psychoeducational, psychotherapeutic, and multicomponent. Conclusions: The study highlights the importance of internet-based and mobile app interventions in supporting family caregivers of older adults with dementia. These interventions positively affect many aspects of caregiver well-being, suggesting their utility in addressing this group's emotional, social, and self-care needs. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. Methods: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. Results: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. Conclusions: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care. [ABSTRACT FROM AUTHOR]

Objectives : This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. Methods : This was a cross-sectional, observational study. People with dementia and their carers (n = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. Results : Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans – Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04–12.99). Discussion : Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden. [ABSTRACT FROM AUTHOR]